Please post your two cents on Herceptin "side effects" real or perceived!

[Lani]

At the Genentech stockholders' meeting (I am not one) they were asked about their post-marketing surveillance and described their's (finding out what problems people were having with their drugs after clinical trials are over and they are being used by greater numbers of people--when more people take a drug, new problems are usually discovered which may be rare or only happen in a subgroup of patients). The Wall Street Journal had recently had an article on how drug companies often fail to do sufficient post-marketing surveillance as they are not motivated to do it (it doesn't increse "the bottom line" and may even hurt it) even though they are obliged by the FDA to do so.

Genentech answered that they have a postmarketing surveillance system which is an industry leader, setting an example for other companies. I am wondering if anyone on Herceptin has filled out any questionnaires for Genentech or if they are merely relying on the oncologists to pass on patients' complaints and problems. Particularly those who were on the trial--have you been contacted by Genentech.

I propose that those who post her (and the lurkers, too) put in their two cents worth about their symptoms AND particularly whether they are on every week or every three weeks as nothing has been published on this as this is one big experiment (a wonderfully successful one!)

I propose you list whether you are on it for early bc(what stage) or Stage IV, how long you have been on it, when symptoms started, what symptoms you had that you didn't have on chemo, how long since chemo ended you started(and what chemo regimen you had), whether you are getting anything concurrently with Herceptin vs Herceptin alone and if you had any other preexisting diseases or any other preexisting diseases for which you take regular or semiregular medication eg,heart problems, epilepsy, asthma, GI problems, etc--also whether the Herceptin problems caused you to stop for any period of time, take another medicine to reverse the problem Herceptin MAY have caused (eg. sleeping pills for insomnia, stomach pills for nausea, heart pills for heart failure, etc)

Feel free to list minor complaints such as nail cracking, skin cracking, nose dryness or nosebleeds, dry eyes,change in hair, and gas as well as nausea, diarrhea , shortness of breath or air hunger (the feeling of having difficulty being satisfied by the amount of air you inhale), swelling of hands and feet(change in ring size), minor sun sensitivity, rib pain, back pain or other bone pain, joint pain in hands and/or feet or other joint pain, etc. Please also list things under questionable such as weight gain, changes in vision or teeth, improvement or worsening of neurologic symptoms( whether brought on previously by chemo or otherwise), changes of mood, difficulty finding words, increased hot flashes etc. Please alsor remember to list your ER status and whether you are pre/post menopausal and if you are on Lupron shots and/or antihormonals concurrently with herceptin. If you are post-menopausal it would help to know for how long (ie,whether you were likely to be having hot flashes anyway etc)

I would hope that this "unscientific" study would be good enough to submit to Genentech so they can cross-check it with their industry-leading postmarketing surveillance. THEY HAVE A GREAT DRUG. Let's see if we can help them have GREAT INFORMATION available to those taking the drug as to what (hopefully) little problems they might expect. Obviously this is a scewed study, as those with no complaints won't reply (although I encourage them to!)

Thanking everyone who participates! (Please feel free to add new questions if I am certain I have forgotten some and certainly new symptoms or problems as I am sure there are many not listed)

Lani

[Lani]

please remember to post whether you are on weekly or every three weeks treatment with Herceptin

THANKS AGAIN,
LANI

[anne]

Hi Lani,
My mom had a stroke last week. She did have mild HTN and elevated cholesterol. But beside that all tests were neg. We are wondering if Herceptin (she had 52 weekly txs) had anything to do with it. Still haven't had time to research it. All I remember is the onc said that it does affect the red blood cells, so it could have affected her platelets also.

[Lani]

MY HEART TRULY DOES GO OUT TO YOU --Sorry to seem so heartless and uncaring in asking more questions, but, once life settles down we would appreciate if you could give us more information. I know you must be and will continue to be busy and preoccupied, but when you have time could you let us know her age, whether she was on any other medications, had any other health problems which might have predisposed her, how long since her herceptin treatments it happened. Breast cancer, and cancer in general, is associated with an increased risk of clots. Was her stroke one due to bleeding or due to clots? Was she on tamoxifen or AIs? . No need to get back to us until she is not only stable(but hopefully improving) and YOUR life calms down. Feel free to get back in months if necessary.

All the best to you and your Mom. She is lucky to have you!

Lani

[kimber]

I started on every three weeks then switched to weekly due to MUGA. My hair grew very slow while on Herceptin. I had headaches, painful knee joints, thin and cracking nails, leg and foot cramps and very bad memory issues. I knew what I wanted to say, but could not say it. Also, I started to stutter words. I have been off Herceptin for a couple months. My hair is starting to grow at a good clip again, cramps are going away, nails - still an issue as well as the memory and word issues. I quit the Herceptin at 7 months. I do not feel comfortable with the long term effects of the drug. I am stage 2A. ER+, PR+ HER2+++,double mastectomy, 4 dose dense AC- 12 weekly Taxol, 7 months Herceptin and will do 5 years of Tamoxifen. - kim

[Lani]

how long after the chemo did you do your herceptin? Did the memory issues come on only after Herceptin was started? Thanks, Lani

[kimber]

I started the herceptin when I started the taxol (September). My last chemo was 11-24-05. My memory "thing" started around Christmas or so. I decided to go off herceptin about 7 weeks ago. Every day I feel more and more like my old 43 year old self.

[Sherryg683]

I am stage IV, started Hercepin in December of this year and will be on it "indefinately" whatever that means. Sinus issues and headaches are the main thing for me. I am also cloudy headed and my thinking is not as clear as it use to be. I also get pretty bad gas after doing my treatments. I have been off regular chemo for a month now and thought that my rib pains would go away but they haven't. I think it's from the Herceptin, I've had scans that said I am clean. Another thing I personally hate, although it's minimal is the smell. After I get my treatment, I can smell the drug coming from my pores when I sweat and also when I urinate. I know this is nothing major but it reminds me of the chemicals going through my body and its not pleasant...sherryg683

[Her2nSue]

Kimber

You said you've been off Herceptin now for 7 months and your old self is starting to return? That's great! I was just wondering about that. You and I have the same dx, except that I had one mastectomy. When they gave me the 12 weekly infusions of taxol, they also started me with Herceptin back then, too. Now I'm on herceptin once every 3 weeks. for 13 cycles. Seems like forever.

Good to know that there is a chance of brain functions coming back to what they used to be or at least close to it.

Sue

[nancymarie]

I am only on Herceptin right now so no other chemotherapy or other treatment is causing these problems.

1. Very bad sinus issues: Dry nose, bleeding nose, congestion or nose dripping - I can hardly breathe at night. My doctor subscribed Allegra and it helped a little.

2. I feel like my energy level is not like it used to be.

3. Weight gain. It seems like since I have been on Herceptin, I have gained about 40 lbs. I started Herceptin on 12/9/05 for 1 year at my request.
I can't blame Herceptin totally for the weight gain, but it seems like I also feel more like a slug and don't exercise as much as I used too, etc. I used to be able to wake up and exercise right away. I have to give myself now at least 30 minutes for my nose to clear up, etc. I also tend to overeat when I am "not feeling that great" and this is how I feel on Herceptin.

4. Pimples. Although they were worse during the first couple of infusions.

5. Mouth Sores. I got them a couple of times (on my inner cheeks and inside my lower lip area).

6. Not thinking as clearly as I used to.

7. Acid reflux.

8. Blurred vision or dry eyes. I had lasik done, but it seems like my dry eye problem is worse now and I even had blurry vision the other day.

I think Herceptin is a miracle drug, but there are alot of side effects to cope with.

I get my Herceptin treatments every 3 weeks - for 30 minutes each infusion.

***IDC, Stage IIB, Her2/NEU 3+, ER/PR - and I requested Herceptin after reading the results of the trials***

Age 48

My last chemo was in 2003. My last menstrual cycle was in 2002 when I started AC so that put me into menopause.

and I'm also a Genentech stock holder!

[Mgarr]

When diagnosed in 12/04 at stage 2B I asked about Herceptin was told I would not get it it was only for metastatic patients. I was slated for dose dense 4 A/C 4 Taxol by the 2nd Taxol I had neuropathy, the last two doses were administered on a weekly basis at the same time Herceptin was approved and added to my final Taxol.

I continued to receive it for approx. a month on a weekly basis (w/ no decadron or benadryl) and then was switched to every 3 weeks. I did radiation while on Herceptin and then went off for 2 months due to lower MUGA score (not sure if that was really the case because they had new machine and lost first results then repeated test not enough nuclear med. left then did 3rd test next day)

Waited 4 weeks no Herceptin repeated test and MUGA was fine been on consistenly ever since. About 3 months ago I started having muscle pains & cramps in the legs & some weakness in leg muscles.

FYI I asked 2 different onc. about a 2nd year of Herceptin both of which said, not recommend because frankly we don't know what the long term effects are.

The only other med. I was on for about 2 yrs. was Allegra & Singular both of which I discontinued upon diagnosis. I have resumed both this month for sinusitis/rhinitus problems.


Mary

[Andi]

I'm currently taking herceptin once every three weeks with a 30 minute infusion, to be completed in September. I started it last September taking it weekly for 12 weeks with Taxol. I continued with the every 3 weeks while taking my radiation. Currently the only other mediciation I am taking is Tamoxifin. I have some "crusties" in my nose and my nose will run when I am exercising. My fingernails are very thin and I do have a tightening of my ankles when I sit or lay for awhile. If I just remember to do some stretches before I get up, then I am fine. My MUGAs have stayed pretty constant as has my weight.

[IRENE FROM TAMPA]

I am so glad you thought of this . In fact I just asked some questions this morning myself due to return of SEVERE leg/hand cramping.

I am ER/PR NEG, HER2 3+
DIAG. BREAST CANCER - 1996
STARTED ON HERCEPTIN IN 1999 AFTER RECURRENCE
ON WEEKLY DOSES UNTIL 2005
STARTED EXPERIENCING LEG/HAND (SEVERELY) AROUND 2003-2004
WAS TAKEN OFF WHEN STARTED ON ABRAXANE
COMPLAINED TO MY ONC. ABOUT IT SINCE I WAS ONLY ON THE HERCEPTIN
THOUGHT IT COULD BE THAT. SHE HAD NEVER HEARD ANYONE COMPLAIN ABOUT THESE SYMTHOMS SO THOUHGT IT COULD BE SOMETHING ELSE.

CRAMPING COMPLETELY STOPPED ABOUT A MONTH AFTER STOPPING.

JUST STARTED BACK UP AGAIN IN APRIL WITH WEEKLY TREATMENTS IN COMBO WITH TAXOL/CARBOPLATIN.

THEY ARE NOT AS SEVERE YET BUT THEY HAVE STARTED IN MY HANDS AGAIN.

I WAS JUST THINKING TO CALL GENETECH TO ASK THIS VERY QUESTION.
IF ANYONE ELSE HAS THIS PARTICULAR PROBLEM. MY CONCERN OF COURSE IS WITH THE HEART.

LET ME KNOW HOW THIS TURNS OUT.

[panicked911]

I was diagnosised 9/14/05 ( my daughter's 10th b'day). lumpectomy right side 10/5/05 - immediately put on tamoxifen - started herceptain week before thanksgiving - began lupron shots 12/1/05 - switched to arimidex the following week. Aches and pains started within a week. mostky joint aches and i the feet and arches. Wet thru reexcision ( came up clean) 1/16/06 - contnued with weekly herceptain - started radiaton 2/12 - ended last monday in march. Cotinued weekly Herceptain thru April 18. Now doing herceptain once every three weeks.
Interestigly i developed a sinus infection early March - was given leviquen - had a horrible reaction muscle aches beyond belief and severe pain - switched to ceftan pain abated 50% still have it mostly in knees ad elbow joints. - was convinced it was the leviquen - now wondering if it a combo of the antibiotic and herceptain and arimidex.
Liver function test slightly elevated since end of march when I started Rhino aquacort for the sinus infections ( which i could blame the herceptain but I had this prior to BC diagnosis) .

I seem to be tolerating it much better at 3 week intervals tha weekly- have been ADD since November - can oly go back to work part time - and have less energy than before - but even that has come back slightly on my off two weeks of herceptain or it can be b/c doen with radiation and that takes awhile (3-8) weeks to leave system.
I am on a one year stint of Herceptain - stage 1 -no node involvement

[Mgarr]

Oh I forgot that awful taste in my mouth I get during infusion and for approx. and hour afterward.

[Berta]

I am Stage I. I took four rounds of epirudicin and cytoxan ending in March 05. I was called back in for Herceptin in July. Since that time, I've had runny nose, night sweats, flaky nails and have gone through two perscriptions as my nearsightedness has gotten progressively worse. I've also gained about 30 lbs. I don't know how much if any of this is related to the herceptin but the docs do believe the vision problems are not explainable any other way. Having said all of that, I would gladly take herceptin for the rest of my life if I could find someone who would prescribe it. I take it every three weeks. Berta

[Bev]

Hi, Stage 2, ER/PR+, 4Ac, then taxol And Herceptin 12 weekly beginning 11/05, solo Herceptin since 2/05. Rads in March. Tamoxifen begining mid April.

Really felt the foggy and fatigue cloud lift shortly after taxol. Reading vision, focus, has rapidly gone downhill, but i am at that age. Ditto memory. Really runny nose that crusts overnight. My ears stuffed up so I couldn't hear for a couple of months but started taking claritin etc. so I can hear again. BMs are loose, thought it might be the rads, but things haven't gone back to normal yet after 4 wks off rads.

Overall though, feeling great. No headaches, no pain, no infusion reactions. Muga is fine,

Thanks Lani

[jhandley]

Recurrence in sept05...one spot to liver. 6 tx taxol and herceptin (3 weekly) have had 4 years of herceptin (3 weekly).
Sinusitis, nausea which has continued intermittently for 2 weeks. Mood swings and hot flashes occasionally..usually in first week after herceptin.

Jackie

[Julie2]

I have very little sinus headache, minor joint pain, also decrease in eye sight.
stage 3.

julie

[Yorkiegirl]

I have been on Herceptin alone since August 05.

I have also called Genetech about the problems I have had, they took a report and also had some one call me as well so it could be logged.

Theses are my issues I have:

Lower back pain, Rib pain, Joint Pain in hands and knees
Weight Gain, Bloating, Tired, Can't sleep, hedaches, runny nose that get's crusty at night.

Every time I mention any of this to the Onc Nurse or My Onc, I seem to get this look, Oh here she goes complaining again. I am to the point now I afraid to mention anything at all, as they seem to think (especially the My Onc nurse) that I am making up this stuff. Quite frankly I am starting to get depressed for the very first time since starting on this journey. OK now I'm crying.


Vicki

Biopsy Dx'd 3-23-05 w/ 3 cm tumor Age 48 1/2 (turned 49 July)

MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
5+/16 nodes
Stage 3
ER/PR-, Her2/neu ++ confirmed by FISH
ki67 78%

Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)

28 Rad's ended October 13 2005

Started Herceptin Weekly August 2005 for one year, will be done this August 2006.

Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.

[Marily]

Dx IDC, stge IV Cancer, r breast lump 8.8cm with sl retracting nipple,erethematous area 12cm, mets to lymph, liver, lungs, bone. microcalcifications left breast er=3+, pr= 4+, her 2 =3.3+

4 sets AC, Leukine, procrit, taxol,x12 given with Herceptin. This Continued weekly. given over 1 hr very undisturbinsg side effects
mouth sore every third day
diarrhea that night and next day.
I year later had L mastectomy r reduction, tram recnstruction which lasted three days and lost.
4 surgeries followed to remove and repair. Continued Herceptin for over 4 years.
Stopped Herceptin May 2005.
Developed Pain over shoulder to L shoulder blade and down L arm.
tight band across stomach and inability to sleep without being upright in a chair leaning forward over a table,
I had severe dilated cardiomyopathy with reduced ejection fx down to 20%, mod -severe mitral regurgitation.
I was than off Herceptin for 4 months felt so wonderful... got my ambition back (which also is gone again,now I am back on..)
I Felt like I did before Cancer I enjoyed my rest off it, for certain! : ).
My brain had less short term memory loss, and I experience a more rapid word return. I was put on Coreg, Digoxin, Aldactone, Diovan, lasix,
I remain on 50mgm Coreg bid, Aspirin 81mgm, Furosemide 40gmg 1/2 tab daily,cod liver oil, Co q 10, Diovan 80mgm,KCL 20mg 1/2 tab daily, O2 2Liters at noc, per c pap, Flaxseed oil, cod liver oil, Essential Fatty acids,

I started out with my Side effects being mild with mouth sores 1-2 gums or sides in mouth by the third day post H, I Used biotene swish, tooth paste, and gum. I also have a special swish Peredex, my dentist gives me.
Dentist found small cracks in teeth and when opened were fizzures in teeth so we capped them.(go to dentist q 3 months.)
I also have ground the back of my top teeth so only 1/2 the back is remaining, and dentist is going to try to rebuild them, since I have no enamal on them. (I find I grit my teeth often.) My stressor release? buildup has worked and I have had top front teeth rebuilt.

Diarrhea starts on night after recieving H and continues for two days. Lomotil or Imodium, with Gas X helps.

The Nails on hands and feet peal or tear very thin, Skin around fingers crack open.

I get teary eyes, infected tear ducts, dry eyes. use Patanol, Liquid tears, ,Use antabiotic eye gtts,
vision changes (I have had 4 pair of glasses in 5 years) I Pulled a new one in my right eye last night, It was like looking through a black cloth, L eye was clear? this lasted no more than 3-4 min and was gone?

I have frequent UTI's and was on 6 months profalactic antibiotic for 100's of small kidney stones both kidneys were involved, and infection.
have been checked for Kidney loss since I take NYSAIDS for overall body pain... So far ok in 6th year but when off meds lots of pain walk around feeling like old Grandma ...now take NSAIDS only when want to be active for special occasions otherwise take Alieve.
My nose gets dry, cracks, I use tripple antibiotic for cuts and bleeding inside.at nighttime.
I also have nebulizer with the o2 and CPap Machine I now use. which helps moisten. My Cardiologist felt it would help heal my heart to use it)to decrease my sleep apnea)
My nose will "just run" at any time it pleases.especially during meals.

I get Chills and hot flashes for which I take Effexor 150mgm timed realease, also vit E,C,B complex, grape seed heart, cranberry for uti, and 14 mushrooms for immunity.
I was Also on Tamaxofin, until bilateral salpingo oofforectomy??? Jan of 2 years ago and went on Aromasin. also had luprin before the bso.

Gradually over the past few years or so, I began cramping in my legs, than hands, arms, sides, toes turned up, hands went into spasm, arms turned inward .. so went on Quinine 260 daiy, Soma, magnesium 250 daily.

6 weeks ago I had a reaction to the Herceptin and we upped soma to 350 bid, magnesium 500mgm daily, also doubled quinine and added Atavan.

This was all because after finishing my H that day, I began to get dizzy and Felt like I was on the outside looking in...outworldly, bp went up to 200/112 I could not hold my head up, than began cramping severly all over with muscle spasms and twitching. it took 1 1/2 weeks to calm it all down.. and I was afraid to sleep because the cramping was too bad when it caught me sleeping.
I was off Herceptin for 4 weeks , than with Dr Slaman's guidance went back on. 1st they tried 90 min with decadron, which I recieved IV twice, since the cramping etc started and my bp went up to 180 over 134 after which for three days I climbed the walls literally, from the decadron. I also puffed up in my abdomine which pushed on my lungs and I had difficulty breathing. I took more quinine, benedryl, gas x and 02 and finally was able to sleep about 3 am 3 nights after my Herceptin/ Decadron dose. (my husband wanted to traid me in for his old wife)

The last two weeks, I have been given my Herceptin over 2 1/2 hours, double diluted and with 50 mgm iv Benedryl. I have come home a bit woozy but I seem to be ok otherwise.
The cramping is returning but slowely and nothing like the first time. Today, so far after my Herceptin.. I am only a bit woozy, from the Benedryl iv, and have had some chills. I have slept most of the afternoon and have been pretty unsteady on my feet, but I got the Herceptin in... and that is what counts..
Oh almost forgot I also get joint aches all over which I as I said I controle very nicely with a nsaid ketoprofen ER.
I have bad insomnia which I take Ambien for, but that works only sometimes... lol and definately not tonight since it is now 5:33am here and I am still up.
Guess that is all but ? there it is.. my 5 years on almost continious Herceptin. And I am still alive and kicking! that is what counts. My girlfriend and I have compared our S/S and we laugh because thay are apart of our daily life.. when others out there c/o a cold or an ache.. we just smile.. Life give lumps but you can pretend they are sugar... It is all how you look at it? Hugs Marily
add today 5-10 I recieved a call my creatinine is up to 3.3 with also elevated bun.. so ?? now what is goin on? Watch your kidneys and drink lots of fluids..

ps... I am now 6 years on Herceptin with the above double diluted dose given very slowly and watching my Elysa numbers about once a month. I remain NED.

[Olivia]

Herceptin every 3 weeks....

runny nose
insomnia
weight gain

Olivia

[Kaye]

I was on weekly Herceptin for one year. After my initial treatment (loading dose), which I had at same time as Taxol, I don't believe I had any symptoms from Herceptin. I did not need to take any pre-medication with it. I also asked if I could receive it over an hour, and the nurses usually did that. I was able to rest and relax during that time. I received it "early stage." I started with it almost 4.5 years ago.
While I was on it I developed 3 attacks of acute pancreatitis--each 13 days apart. However, this was after I had been on it 6 months and also occurred about 7 or 8 weeks after I started an AI (aromatase inhibitor)--Arimidex. I think, if anything, the pancreatitis may have been related to the Arimidex. However, a private radiologist thought the pancreatitis may have been related to having many enlarged retroperitoneal nodes which I had since time of diagnosis.
Also, one week week after the last of the above pancreatitis attacks, all blood levels were normal. About a week later I developed severe fatigue and weakness (including muscle weakness in legs and eyes). New blood tests showed that I was hypothyroid but my testosterone level was very high as well as AST. I was put on thyroid medication and level returned to normal with about 2 to 3 weeks.
Because of the high Testosterone level it was suggested I have a test to see where that was coming from or have ovaries surgically removed. At this same time I developed a severe burning pain in the pelvic region. (This burning pain was similar to the same burning pain I experienced at the time of my breast cancer diagnosis, a year and a half earlier, that had occurred 10 days before I noticed a change in my nipple). I consulted with an gynocological oncologist and decided upon a complete abdominal hysterectomy with Salpingo-oopherectomy. (The testosterone level had been double normal but when re-tested went up to 6 times normal, although that may have been a lab error).
I had the hysterectomy one week after my last Herceptin treatment. (Interestingly, at my pre-op appt. for the hysterectomy I had a pap smear done. The results of that pap smear showed abnormal cells. It was the first time I ever had an abnormal pap smear).
Although I was told that I was "early stage," I think I was at a more advanced level. My oncologist had allowed me to have it out-of-protocol because, as he indicated in a report, my case seemed to meet special considerations. I don't think I was out-of-protocol. I strongly believe that I was stage IV at time of dx. and the private dr's whom we consulted with for 2nd opinions hinted at the same.
What I did notice was that my alkaline phosphatase level which had been slowly increasing made its most significant jump 3 mos. after I stopped the Herceptin and was only 6 pts above normal. My oncologist then allowed "prophylactic" Zometa at half dose every 3 mos. along with Doxycycyline and Celebrex. The alkaline phosphatase level stabilized and then slowly returned to what it had been at time of dx. which was half that level.

[Lani]

fascinating story! THE BIG QUESTION IS...which if any (or all) of the symptoms you attributed to herceptin disappeared after stopping herceptin and how long did it take? (and which persisted) Thanks again! Lani

(PSThose that didn't disappear might more likely be attributed to the Arimidex)

[nancymarie]

Yorkiegirl,

I feel the same way you do. I mentioned alot of my side effects to my onc last week and I got the impression too that he thought I was a hypocondriac or something.

I am considering stopping the herceptin after about five months now. My nose problems are so bad that I have been sleeping on the couch at night so I don't wake my husband up with blowing my nose, sneezing constantly, etc.

I also hate the way I look and feel right now.

Take care!

-Nancy in Colorado

[tricia keegan]

Hi I was dx in June 05 with stage 2 idc 3/9 nodes positive and highly triple positive.I did a/c x 4 Taxol/herceptin weekly x 12 and 3 weekly herceptin since Early Feb this year.I have muscle leg and back pain and stiffness in joints and since my last two herceptin treatments have developed an itchy rash with blotches which come and go.I also have headaches especially on waking and a runny nose.
Tricia

[RhondaH]

At the Genentech stockholders' meeting (I am not one) they were asked about their post-marketing surveillance and described their's (finding out what problems people were having with their drugs after clinical trials are over and they are being used by greater numbers of people--when more people take a drug, new problems are usually discovered which may be rare or only happen in a subgroup of patients). The Wall Street Journal had recently had an article on how drug companies often fail to do sufficient post-marketing surveillance as they are not motivated to do it (it doesn't increse "the bottom line" and may even hurt it) even though they are obliged by the FDA to do so.

Genentech answered that they have a postmarketing surveillance system which is an industry leader, setting an example for other companies. I am wondering if anyone on Herceptin has filled out any questionnaires for Genentech or if they are merely relying on the oncologists to pass on patients' complaints and problems. Particularly those who were on the trial--have you been contacted by Genentech. I have not filled out any questionnaires, I was not in the trial.

I propose that those who post her (and the lurkers, too) put in their two cents worth about their symptoms AND particularly whether they are on every week or every three weeks as nothing has been published on this as this is one big experiment (a wonderfully successful one!) I began every three weeks Herceptin 8/18/05 (last one will be 8/10/06) after my 1st 2-3 infusions, I developed a rash under my affected breast, but this eventually went away. My liver enzymes became raised so they switched to every week (this was after Thanksgiving prior to Christmas) which seemed to help, so my onc said that it would be safe to say the Herceptin "irritates my liver a little", but he let me go back on every 3 weeks as I didn't like going in every week. I also had bad sinuses, but that seems to have subsided, but the "fogginess" began and continues w/ Herceptin. My surgeon said "they say there are no side effects, but that isn't true" he had a patient on it who had a "wierd" feeling in her foot, he told her to stop it and she did and it went away. I was also , dizzy for a while (until Jan), but that TOO has gone away. I sometimes wonder if some side effects are "psychosomatic" as mine disappear when I have it tested...hmmm.

I propose you list whether you are on it for early bc(what stage) Stage 1 or Stage IV, how long you have been on it 8/15/05, when symptoms started, what symptoms you had that you didn't have on chemo, how long since chemo ended you started(and what chemo regimen you had) 5/18/05 (6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan), whether you are getting anything concurrently with Herceptin vs Herceptin alone Herceptin alone and if you had any other preexisting diseases or any other preexisting diseases for which you take regular or semiregular medication eg,heart problems, epilepsy 30mg Phenobarbitol, asthma, GI problems, etc--also whether the Herceptin problems caused you to stop for any period of time, take another medicine to reverse the problem Herceptin MAY have caused (eg. sleeping pills for insomnia, stomach pills for nausea, heart pills for heart failure, etc)

Feel free to list minor complaints such as nail cracking, skin cracking, nose dryness or nosebleeds, dry eyes,change in hair, and gas as well as nausea, diarrhea , shortness of breath or air hunger (the feeling of having difficulty being satisfied by the amount of air you inhale), swelling of hands and feet(change in ring size), minor sun sensitivity, rib pain, back pain or other bone pain, joint pain in hands and/or feet or other joint pain, etc. Please also list things under questionable such as weight gain, changes in vision or teeth, improvement or worsening of neurologic symptoms( whether brought on previously by chemo or otherwise), changes of mood ornery, difficulty finding words they totally escape me, increased hot flashes etc. Please alsor remember to list your ER status ER+ and whether you are pre/post menopausal though haven't had a period since 4/05 and if you are on Lupron shots and/or antihormonals concurrently with herceptin. If you are post-menopausal it would help to know for how long (ie,whether you were likely to be having hot flashes anyway etc)

I would hope that this "unscientific" study would be good enough to submit to Genentech so they can cross-check it with their industry-leading postmarketing surveillance. THEY HAVE A GREAT DRUG. Let's see if we can help them have GREAT INFORMATION available to those taking the drug as to what (hopefully) little problems they might expect. Obviously this is a scewed study, as those with no complaints won't reply (although I encourage them to!)

Thanking everyone who participates! (Please feel free to add new questions if I am certain I have forgotten some and certainly new symptoms or problems as I am sure there are many not listed)

Lani

Rhonda


And thats MY 2 cents worth

[Christine MH-UK]

I find it really odd that many people seem to be treated as hypochondriacs even for known side effects. According to the European official packet insert for herceptin, in addition to heart problems:

"Other very common side effects of Herceptin, occurring in more than 10 out of 100 patients, are:

diarrhoea, weakness, skin rashes, chest pain, abdominal pain, joint pain, and muscle pain.

Other common side effects of Herceptin, occurring in less than 10 out of 100 patients, are:

allergic reactions, abnormal blood counts (anaemia, low platelet count and low white blood count), constipation, heartburn (dyspepsia), infections, inflammation of the breast, inflammation of the pancreas or liver, kidney disorders, increased muscle tone /tension (hypertonia), tremor, numbness or tingling of the fingers and toes, nail disorders, hair loss, inability to sleep (insomnia), sleepiness somnolence), nose bleeds, acne, itchiness, dry mouth and skin, dry or watery eyes, sweating, feeling weak and unwell, anxiety, depression, abnormal thinking, loss of appetite, weight loss, altered taste, asthma, lung disorders, back pain, neck pain, bone pain, leg cramps, haemorrhoids, bruises and arthritis.
Some of the side effects you experience may be due to your underlying breast cancer. If you receive Herceptin in combination with chemotherapy, some of them may also be due to the chemotherapy.

If you experience any of the side effects mentioned in this leaflet or notice any side effects not mentioned in this leaflet, please inform your doctor or pharmacist."

http://www.emea.eu.int/humandocs/Humans/EPAR/herceptin/herceptin.htm

My story: diagnosed 10/2003, 6 FEC 75, mastectomy, 4 * taxotere, radiotherapy, not able to start herceptin until quite late 10/2005, a year after radiotherapy. ER-/PR-, so no further medicine besides three-weekly herceptin. Had my last period right before I started herceptin, although I think that's coincidence.

I have had constipation, nail disorders, inability to sleep, dry skin, sweating, feeling weak, bone pain (in odd places like my toes), and haemorrhoids. Tend to get weird headaches/sinus problems during the few days after the infusion. There are a few ladies on herceptin where I get treated and they all have some symptoms. I am having increased difficulty concentrating, but that doesn't seem to be on the list of known side effects.

Still, I will stay on it until October, but I must admit I am counting the treatments.

[Kaye]

My thoughts are that it was most likely the Arimidex which caused the side effects and not the Herceptin. The first pancreatitis attack occurred about 8 weeks after I started the Arimidex. I had already been on the Herceptin for 5 mos. by that time. Arimidex affects hormone levels which, in turn, can affect cholesterol. High cholesterol may be associated with pancreatitis. My cholesterol levels became high for the first time after I started Arimidex--and had lost a good amount of weight. (30+ lbs).
One private radiologist told us that he thought my enlarged retroperitoneal nodes may have been responsible for the pancreatitis. Perhaps the Arimidex had some play and was related to that as well.
I am not sure about becoming hypothyroid--that could have been from the radiation but do wonder if the pancreatitis could have caused some damage which caused it to develop.
Also, another thought--at same time thyroid became hypothyroid, my testosterone levels were high. Testosterone is also a hormone and there very well could be some relationship between that and the arimidex which affects estrogen levels.
However, in addition other tests were off, too--one liver enzyme--AST--oh, and my bilirubin count was elevated then as well.

[al from Canada]

If Genentech had a postmarketing surveillance system then they forgot to tell Roche because it never got to Canada.


Aside from the usual runney nose, waterly eyes and leg cramps; the one I would like to see more study on is the vision changes. Linda was practically blind, for what ever reason, in her distance vision. She couldn't even see faces in the TV; to the point where she either stopped watching or we buy a big-screen TV (we did the latter). Strangely, where she used to need reading glasses; she could now read without glasses.

Side effects aside, without herceptin........

Al

[sarah]

Herceptin every 3 weeks, 2nd year,
DCIS in 1999, recurrence invasive in 2003,
Taxol and Herceptin started March 2004, continue Herceptin
Femara started after chemo

side effects:
fatigue
cataracts - but was told probably the cortisone given with Taxol or the Taxol - still coping but eventually will have to do something about it
dry, sore nose
dry eyes and skin
skin rashes
split finger nails that never grow
cramps - somewhat helped with Magnesium B6
periodic head aches

all said and done, I don't feel my side effects are that bad - except the fatigue and the eyes, the others are just a nuisance that I cope with. I may look into the anti-fatigue pills mentioned.
I want to stay on Herceptin as long as my heart can take it. Maybe now that it will be given to more people, the price will come down a bit and that will help more people get it and be able to stay on it longer.
sarah

[Karen t]

I have been on weekly Herceptin for two years plus Navelbine (3wks on/1 wk off except for a 6-mo break in the middle of the 2 yrs). Symptoms include (not in order of importance):
UTI's that started during the AC (4 yrs ago) but seem finally under control now
Diahrrea on the day of Herceptin infusion, constipation after that
Muscle cramping including abdominal, aching legs at night
Runny nose with periodic bouts of crustiness, bleeding, pimples, funny smell like an infection
Runny eyes - and most recently a horrid bout of dry eye & SEVERE blurry vision that has taken 2 full wks to improve (after taking Claritin, etc. that further dried my eyes)
Swelling ankles
Numbness/pain in 3rd and 4th right toes
Elevated pulse
Inhale ok but it does not feel refreshing
Rib and some breast pain in area of mastectomy (but could be from Navelbine) plus shoulder and arm pain
Lymph fluid build-up in chest area after infusions (could be Herceptin or Navelbine)
Some anxiety
Last but not least: NO insomnia! With gratitude.

[kat in the delta]

Maryl,
What is the chemo drug that some have used that replaces Adriamycin??( the A/C)
Also what is the name of the new drug for Brain metast.??
I wanted to tell my onc/rad. tomorrow. Hope you are doing o.k.
Just had a cousin diagnosed and has spread to the lungs, hipbones and vertebrae. Thanks, Kat in the delta

[nancylove]

stage 2b, Her+++ er-/pr-
first dx in 2003, Dec.
had mascectomy, 8 rounds chemo
reconstruction
then whammo recurrance 2005 April,
11 months after chemo ended..
Herceptin was then approved for early stages HER2+++
I wonder if i had it the first time if i would have gotten
it the second time...
I had to go thru chemo (navelbine 18 rounds , radiation and got herceptin for the first time.
Side effects??
I have stomach problems, diarrhea the day before herceptin is due again, not due to nerves becuz i am not even thinkin about it
when i realize it is hitting me.
Then the day OF, i have stomach problems again.
sudden diarrhea.
WATERY EYES all this time, i look like im crying.
Also burny urine.
also, INSOMNIA!! now i know what is going on, i just didnt know why i cant sleep!
some weight gain but it might be chocolate after all??
I will end one year of herceptin in June.
Nancy Love

[MCS]

About two weeks ago, I started a thread where I was asking if we could start some form of database that coudl be supplied to users here and in case docs or firms wanted to find out information on this herceptin stuff.

So it appears that you are as frustrated as I am.

The oncs shrug away everytime I mention anything. Or they say, it's not in the literature, or rare. I'm scared to metion anything because then I'd be doing mri and pet scan on a weekly basis. I also keep hearing and reading here and other places that there's no musch info on side effects and we are writing the "book" on them.

Well, we should then! let's start some form of database where all these are gathered. I know we have a search button and I know that it's not a substitution for medical advice but there's a got to be a place where doctors can be provided with this information and not just form me.

I HEAR YA SISTER!

MCS (maria)
dx 7/2005. mast on right side

[Bev]

Hi Maria, I think it's a good idea. A lot of work, and you need some expertise to design it . I have thought of the same idea myself. As you know, a lot of the info we have (patients) never gets recorded or followed up on. It just looks to me as this is something that could turn into a career. A worthwhile career but who has the time to do it right? So, keep coming up with ideas. BB

[Sheila]

Diag 2/2002 Stage 1
Her2+++, ER-PR - tumor 7mm IDC
L Mastectomy
Reconstruction 6/2003
Stage IV with Mets to supraclavicular nodes 9/2003
Placed on Herceptin every 3 weeks
Remain on Herceptin
Side effects: watery eyes all the time, runny nose, all the time, nail splitting, fingers cracking, hot flashes (menopause???), insomnia (menopause) WEIGHT GAIN!!!
Xeloda added to Herceptin 3/2006 for progression of neck nodes on Herceptin

[Patricia]

My nails are separating from my fingers and toes. I thought it must have been from the Taxol, as I was told that could happen, but I have been off the Taxol since end of Feb and it is getting worse. My onc confirmed last week that he has seen this with others on Herceptin.

Itchy skin even though it is not dry.

Runny nose which goes crusty at night - Every night!

Foggy head (hard to know if it is chemo brain or from the Herceptin) - can't find words

Slow growing hair

Dropping MUGA :-( Dropped from 62 to 52 in the 5 months I have been on so far. I am hoping it stabilizes so that I can stay on, we will be doing a new MUGA in 2 mos.
Painful legs, but could be Aromasin. I had a huge issue with this on Taxol and it is better but has levelled off where its at. Onc said could be Herceptin but also could be Aromasin

[atdec05]

It's been interesting to read that others have experienced vision problems. I also have a runny nose, intermittent headaches, weight gain, and trouble sleeping (though I think that's due to chemopause). At 3 month echo, EF dropped from 65 to 60.

I guess I should add chemo brain to the side effects, though that seems to have started with the AC :-) My blood pressure also started climbing after about 6 weekly Herceptins. My onc. thought it was too far out from the AC to be from that, but didn't think the Herceptin could cause it. I also had a facial rash after the first few treatments, but it went away.

Stage 1, er/pr-
pre-menopausal (now in menopause)
4 DD AC (finished 1/25/06)
Feb started weekly herceptin

[Lisa1962]

I too get that "look" from the onc when I mention symptoms - YES I know that chemo symptoms are much worse - but I will be on herceptin indefinitely and these are definite QOL issues

Timeline
March 2005 - Diagnosed Stage IV age 42
April 2005 - began Herceptin, Zometa, Lupron, (every 3.5 weeks)
and Femara daily
Today - still on all of the above

Other Medication
Advair for asthma
Aciphex for reflux

Symptoms - I can't tell if the following are from being slam-dunked into menopause or from the Herceptin:
muscle pain
joint/bone pain
leg cramps and midsection cramps/pain
stiffness
memory loss - difficulty with word recall
slower though processes in general
insomnia
peeling nails
Slowwwwwww hair growth
tingly hands - shoulder/arm pain leading to hands
dry mouth
dry eyes
dry skin
headaches - worse right after infusion
hot flashes
shift in weight - all going to midsection - bloaty
I smell funny for a day or two

I'll edit if I think of others

[R.B.]

Lisa.

I know I grind on about diet and balancing the omega threes and sixes but.....

Asthma is an inflamatory related condition and some writers link excess omega six to asthma.

Dry are are definately helped by balancing the threes and sixes and taking DHA - I can vouch for that personally.

Smart Fats M Schmidt is a whole book essentially about the importance of omega three and particularly the long chain omega three DHA and its impact on brain health - mental alertness, tiredness, ADHD, MS, Bipolar, age realated degeneration..................................

DHA is fundamental to eyesight.

There are lots of links click on search above right.

If you have time and are interested you can find Smart Fats second hand on the WEB.

We have only had access to high levels of cheap concentrated omega six sources oils for the last say 100 years. Fats are fundmanental to our existance and have a role directly or indirectly in many of the bodies functions

I am passionate on the subject. At the worst it should improve your general health - even the doctors sites are officially accepting omega three is important to cardiac health, at best a few studies have suggested risk reduction factors as high as seventy percent.

As always do talk to your advisors about magor dietary changes.


RB

[Lisa1962]

RB - I've noticed your posts about the omega 3s and 6s

I've been overwhelmed with work and mommying - but will be taking an extended sick-leave beginning mid-June and will be able to focus on things like diet... my eating habits have gotten worse -frighteningly worse - since diagnosis - stress and lack of time and energy have turned me into a prepared foods eating person - which I know is bad - but I simply cannot even go to the grocery store - my husband loves junk and that's all the family has been eating

I have 5 weeks to go and some changes will happen!

[R.B.]

There are lots of sites selling fish oil, but here is one I have found recently that is very reasonable, and the product looks like its OK. Life extension are state of the art but likely more expensive.

I have only just ordered and it has not arrived yet but I do not anticipate any problems.

Here is a link for fish oil - they deliver. Your bodies take up tails off at about 2grams a day.

http://www.vitacost.com/CarlsonTheVeryFinestFishOil-169floz

You can significantly alter your breast tissue composition in about three months according to reports in trails.

Processed food generally all has vegetable oils in it and so is high in omega six.

Smart Fats also deals with impact of DHA deficienies in young mums PND etc. as apparently the developing child grabs it even from the mothers brain, and the importance of DHA in development etc.

10/10 for coping with work children BC and a home,


I hope things look up.

RB

[marymary]

Hi, Marily:

One thing jumped off the page at me in your post. You mentioned poor, almost nonexistent eyesight in one eye only, other eye was fine. As you've had a lot of other small issues with your eyes it is probably nothing to worry about, however, I had a similar situation which I ignored for awhile and it turned out to be a small brain met. Actually it turned out there were two. I had gamma knife a year ago and continue to be NED so all's well that ends well.

I passed the symptoms off for awhile because it was transient, happened only in one eye, when lying down, when the moon was full (ha ha). If I jumped up and turned on a light I could see perfectly! It never happened in the daytime so it was really easy to forget all about it (what, me worry???). Finally I got up the nerve to mention it to my GP who referrred me to an excellent Neurologist. Unbeknownst to me, the Neurologist had studied Neurologic Oncology at Duke. She too was (seemingly) baffled by my symptom but did order a brain MRI et voila, two small mets.

Brain mets are easy to treat early on. I certainly hope that's not what's going on for you but it wouldn't hurt to take a little peek.

Mary

[Marily]

Mary, I see my onc tomorrow. I will be certain to tell her.. I almost forgot about it. : (
Thank you so for the note. Hope it was a fluke but I agree it is definately something to look into. I know many friends who also had their breast mets go to the brain.. Hugs and thank you again
Marily

[marymary]

Marily, I'll keep my fingers crossed that it is just another side effect of Herceptin. Good luck and God bless.

Mary

[suzan w]

dx May '05 invasive lobular..stage 1 small 7mm tumor, ER+PR+ Her2+, Oncotype dx predicted high-intermediate risk for recurrence.

Bilateral mastectomy June "05
4 rounds A/C
started herceptin Oct. '05-every 3 weeks
arimidex for 5 years

MUGA's holding steady at 65%
side effects:
joint pain
crusty nose, bloody noses, stuffy at night-hard to sleep
insomnia
word recall problems-stutter for the right words
swollen ankles
weight gain-10 lbs

[juanita]

I am on herceptin every three weeks, almost one year now and finished chemo a year ago. I have noticed that my fatigue has gotten worse while being on herceptin. And it seems like the longer I do it the worse it gets. Memory problems have also gotten a lot worse. I've had splitting fingernails and small weight gain that is almost impossible to get rid of. I developed a rash that has since gone away with treatment of it.

[BubblesMom]

I am on herceptin every three weeks for one year ending in November and finished chemo 6/05. My symptoms are:

* swelling in hands and feet
* elbow/knee/shoulder pain. Shoulder pain so severe began physical therapy to regain mobility
* thinning hair (began after herceptin;hair growth after chemo was definitely thicker)
* feeling weak and unwell (after start of herceptin but has improved since acupuncture treatments)
* hot flashes and vaginal dryness (after start of herceptin but no longer an issue since acupuncture treatments)
* loss of words; general cloudiness of thought
* low white blood count
* vision change
* general bloating in midsection;not much weight gain but increase in body fat everywhere (arms, thighs, around waist) that seemed to happen in matter of months
* degradation of gum health. Prior to chemo always had 2 gum pockets that were borderline deep. Went to dentist in January (after starting herceptin in November) now deep pockets all over and recommending gum surgery! Additionally, gums bled every time I flossed or brushed (didn't happen during chemo). This subsided once I began taking COQ10.
* minor acne
* early on sometimes felt as if I couldn't get enough air (haven't experienced in awhile)
* runny nose, crusty in the morning (initially experienced quite regularly..no longer an issue)

[Her2nSue]

I had Herceptin with the taxol for once a week for 12 weeks straight and really didn't see/feel any significant problems. Now I'm on Herceptin once every 3 weeks for a year. After the first infusion, the following week I noticed my thumbs were achey and throbby. Mainly in the joint to the hand. As the weeks progressed for my 2nd infusion, fingers started to swell, slowly. No problem with ankles or feet, though.

O.K. so now I've had the 2nd infusion and the pain is unbearable in the thumbs, extremely stiff leg muscles and back muscles. If I drive for 30 minutes straight, I look like a 110 yr. old person getting out of the car. Once I get going, it's ok, the back muscles and leg muscles seem to sort of relax. Not the thumbs. I finaly called the onc and they put me on Celebrex. Doesn't make me feel completely limber, but the pain is much better. I can now write my name without cringing in pain.

So, if anyone else is experiencing these joint, muscle pains, be persistent and see if they will prescribe something for you to help you through the rest of the herceptin infusions.

Ya know, all of this just wipes you out, and we're having an early summer heat wave out here which just makes it even worse. If I can get one thing done during the day, I feel like I at least accomplished something other than just being a lump of body pain.

[MJo]

I've heard of radiation recall, but I wonder if there is a Herceptin recall. I finished Taxol one month ago. I had weekly Herceptins and just got my first triple dose last week. My Herceptin side effects are similar to taxol's -- tingling in fingers and toes, redness across nose and cheeks which clears up in two days. Does Herceptin have some of the same side effects as Taxol or is this Herceptin recall?

[SandyR]

I began herceptin in November 2005 with taxotere when I finished chemo with adriamycin/cytoxin. When I finished taxotere January 2006, I continued on with herceptin every 3 weeks and will continue until November 2006 (Stage IIA-B, HER2+++, ER/PR-). I finished rads mid April 2006....I teach first/second grade full time and try to exercise as much as possible.
I gained 35 pounds from August (time of diagnosis and beginning treatment) through December, but then through diet and exercise, lost 17 pounds. I am at a point now that I cannot seem to lose any more of the weight....although I have started back playing indoor soccer 2 X each week, teaching full time, and riding my bicycle to work! My weight gain is also mostly around my middle....I have never had a belly in my life and now it is huge!

I also have swollen hands and feet....nose bleeds each morning....and some nasal conjestion....my knees and feet ache....feet ache particularly when I first get up to walk....chemo brain....and the smell after infusion is gross!

I also am a stockholder of Genentech....and am thankful for herceptin!~
I have never been asked anything about my lifestyle or symptoms by anyone...THANKS FOR ASKING!!!! http://www.her2support.org/vbulletin/images/smilies/smile.gif

[kat in the delta]

Sandyr,
How long have you had stock in Genetech? Ishould have bought some when I first looked at it in Mar. 2005.
As for the "side effects", I get: swollen extremities-(fingers, ankles feet , hands), but take a( Lasix) diurectic for 3-4 days,then my usual maxide=1/day. I am in pain and ache( feet,neck, wrists, ribs, back etc.), but my onc. has given me pain RX, which helps me continue to walk and exercise. " If I don't exercise, I feel worse and hurt MORE!!" ( I had a ft. of my colon taken out 3yrs. before having cancer, and it has really been giving me problems lately), unless it's the Herceptin.

[kat in the delta]

Sandy, Do you have pain and take pain meds. for Herceptin side effects??? kat in the delta

[SherryS]

I started herceptin in April 06. I've had 3 doses and so far so good. I have noticed that I get a headache the day and day after I've had it. I've also been having very dry itchy eyes, a raspy throat, some slight congestion and yesterday noticed an itchy rash on the arm where I have the IV. I've been putting the latter 4 symptoms down to allergy -- this is the time of year when my allergens would begin to bother me. I still have some stiffness and low back ache but I've been putting that down to lingering side effects from taxol. Hard for me to say if this strictly herceptin, not herceptin at all or a combination of allergy/lingering side effects and herceptin.

I'm to have herceptin 1 x 3 weeks for a year. I'm a stage II, er/pr- and her2+.

[StephN]

Hi Lani -
Looks like there is a lot of info developing here.
Diagnosed Sept. of 2000. Lumpectomy, axcillary node dissection.
8 of 18 nodes positive. Hormone neg/neg.
Was already in menopause for about a year prior to dx. No hormone therapy ever.
I started Herceptin weekly (vitamin H - just add it to my supplement list!) in the beginning of January in 2002 along with Taxol and Navelbine for agressive mets.

Herceptin alone plus Zometa since July 2002.
Herceptin tri-weekly since July 2002. No breaks ever necessary.
Had a lot of side effects early on, but they have gotten better little by little, so I attribute most of them to all the various chemos I had in a short period of time.

Still noticing:
* Leg, foot and hand cramps from time to time - take Quinine that helps a lot.
* Some bone, joint and other aches and stiffness. Attribut some of this to the ANA positive situation that has developed with me. Not enough to interfere much with things I need to do.
* Intermittent runny nose and eyes. Not severe and take Allegra as needed for seasonal allergies.
* Skin peels on forefingers. Nails in good shape. Hair grows normally.

No stomach upset or gas problems beyond normal. No headaches.
Cognitive functions mostly ok.
Blood counts and liver functions stay well into the normal ranges and tumor markers are steady like a rock. ;-)

NOTE: I do get my infusion over 45 minutes - this seems to alleviate the slight flushing and redness that can occur if a shorter infusion. The infusion suite nurses say that other patients like a longer infusion as well.
I also hydrate myself very well and drink water and eat during my infusion.

Really feel fortunate this this drug is so benign as far as side effects for me. I still have some problems due to all the taxanes and the rest.

I work hard to eat well and get some proper exercise but get hit hard again when my brain acts up. After the Gamma Knife in Jan of 2005, I was a mess again. Fought my way back to good health and then had a brain surgery in Feb of this year. Getting back to normal from that now with the exception of a fluid pocket that has formed at the surgery site and needs attention.

P. S. There is NO follow up on those of us who got Herceptin as Stage IV. I asked about that in San Antonio to Genentech reps and they seem to think it is up to some recognized researchers to get a study together that approved by the FDA. The docs do not report to Genentech as far as I know.

[sadie]

Dx Oct 05 Early IDC / Stage 1 / Lumpectomy / Her2+++ / 1cm / grade 3 / neg nodes / ER+ PR weakly+ / post menopausal
AC every 3 wks x4: Had changes in vision; beginning echo 71%; end echo 58%; white counts down once (had neulasta shot). Only slight nausea. Fine otherwise.

Herceptin/Taxol every wk x12 :
Half-way thru, echo = 65%; blood counts all ok except low iron mid-way thru. Received something in chemo 3x to bring back up; hair growing back thick & full;
Rosy cheeks for 2 days after trtmts (blame Herceptin);
Numbness & swelling in both feet,ankles. 20 mg lasix/didn't help; Don't know what to blame; tested for leg blood clot=neg;
Bloated (blame steroids);
Developed acid reflux (Taxol or Herceptin to blame?) Taking prevacid resolved problem;
Vision getting worse (goes back & forth); Started during AC, but now that I'm off of it I don't know what to blame.
Became short of breath upon excertion & very dry crusty nose; Nails splitting,peeling easily & sometimes got mild pain in pelvic area (ovaries?) Blamed Taxol for all of that.

Herceptin every 3 wks (just had 3rd dose)
shortness of breath & nail splitting & crusty nose & sluggish feeling & pain in ovaries area disappeared; now have:
Had runny nose (I blamed Herceptin); No more runny nose after 3rd tx.
Swelling in left foot & ankle much much worse; slight swelling in right foot & ankle (40 mg lasix not helping; I think herceptin responsible; dr says she doesn't think so). Sending me for Muga (it's time) and to see a cardiologist just in case.
Cardiologist did ekg; came out fine; Said ankle swelling is due to water-retenion.
Vision still bad, especially 1 week after Herceptin tx (near & far-sight); I blamed earlier AC treatments. Don't really know now, since it is continuing. Since it's worse for week or so after Herceptin, I blame Herceptin for current vision problems.
Sometimes slight wave of pain in sides of neck for few seconds; I blame Herceptin; Onc said not from Herceptin;
Now after 3rd tx, I am getting more cramps in neck; Actually had severe muscle spasm in neck (under left chin area after trying to stop a yawn).
Still taking prevacid for acid reflux developed during Tax/Herc; Now actually getting gurd. Due to Herceptin?
Was emotional:cried easily (happy & sad) for about 1 week after 1st 2 tx. Was also crabby during same time. I blamed Herceptin. Dr says no.
Cracking in jaw (tmj) worse. I blame Herceptin.
Hot flashes much stronger than prior to any Herceptin (could be because hot weather is here now), but I think Herceptin contributing to it;
Trouble sleeping (sometimes due to hotflashes, sometime not) I blame Herceptin;
This past week have felt a few flutters in heart area. Onc says probably esophageal spasms leftover from taxol tx. Cardiologist said heart ok on ekg. Swelling in feet results in numbing toes (left over from Taxol?). Don't know.
Becoming scatter-brained; Have to search for words at times. (I blame Herceptin)
Other than that....doing great!

[Barbara H.]

Herceptin has been easy for me. I had fever and chills from the first loading dose. My nose runs a bit more and is crusty and my nails are not great. Sometimes I am a little tired the next day. However, I have to say that if I didn't know that I was on Herceptin, I probably wouldn't even notice these slight symptoms. That is not the case with Navelbine and Zometa which I currently take for minor bone mets which have popped up. I really get achy from Zometa and fatigue and aches from Navelbine. Last week my chemo nurse advised me to take 3 advil the first night I received Zometa and three the next morning. I teach third grade, and went to school the next day and did fine. Advil seems to do the trick to make it through the first few days. Two years ago I didn't have bone mets, but had it everywhere else, liver, lungs, nodes throughout, and skin mets. Herceptin alone got rid of all of that until March of this year when my tumor markers were starting to rise and bone mets were confirmed. I just hope that I am now not resistant to Herceptn. My CEA is currently 1.3 and CA27-29 is currently 20 so the combo I am currently on seems to be working. I just want to be able to get off the Navelbine at some point because it really has done a job on my blood counts. I think Herceptin is like other drugs and food. There are common reactions, but drugs and food can affect different people differently.
Best wishes,
Barbara Holz

[Maggie]

7/2004 Lumpectomy
Infiltrating Medullary Carcinoma
Stage 1 no grade, 1.2 cn.
HER2 3+ ER/PR negative
4 A/C 33 rads.. finished 12/23/04
Herceptin started November 2005, every 3 weeks, 90 minute infusion for 1 year..

When I first started Herceptin, my nose ran constantly, bled a bit and was very crusty.
Now, it still runs but not quite as much. I have always and still do get little balls of mucus that form in the nose and stick inside. I am constantly trying to pick them out since they do show and it hurts and bleeds, some. I did read here a while ago about the Ayr Saline Nasal Gel and have been using that. This week, my one nostril was so swollen and red at the tip for 4 days. I looked like a drunken sailor, as the saying goes! I did try hot compresses inside and out of the nose to soften them. :(
I will talk to my Onco about some of the meds mentioned on this board by someone earlier.
I also have shredding nails and pain in my knees, "sometimes" when using the steps.

Let me say, for me, these are all tolerable and worth it as long as I can receive Herceptin.. Bring on Wednesday! :)

Maggie BTW....... Thanks for starting this thread again!

[Deb]

DX
Stage: IIIA
IDC
9/9 Nodes Positive
ER/PR -
HER2+++

TX
Lumpectomy - Aug 05
AC/T - Sept 05
Herceptin started w/Taxol
36 Rads - Mar 06
Herceptin weekly until mid Dec 06

Side Effects
Foggy, foggy memory - lost words all the time (look like fool at work)
Headaches - don't really hurt, more like a pressure, like I have a cap on
Woozyness - only occassionaly (so it makes me think I'm making it up)
Bursitis in shoulder - for a several weeks, now gone
Tennis Elbow - started after bursitis finished, this comes and goes
Depression - I have reason to be depressed, I'm in tx for bc
Weight Gain - Overeating could be reason, but am I craving because of "H"?
Split Nails

[dskdrive]

DX as Stage 2, IDC 9/04
ER and PR +
Her2+++
Chemo put me in menopause at age 51
Lumpectomy (tumor 2.5 cm) Sen Node(Neg)
A/C(4)
Rads(33)
Arimidex
Begain Herceptin Aug 05 for one year. Every 3 week dose.
Had infusion reaction on loading dose. Chills. Now premedicated with Tylenol and Benadryl.

Side effects: Crusty nose to begin with, now it just runs. Very dry eyes. Nails are thin and do not grow much. Eye brows are thin on the outer edge. No hair growth much on legs or under arms. Head is OK except is grows much slower. Cannot sleep and have night sweats, again may be the arimidex. Weird dreams. Pain in neck. Just developed basil cell cancer on side of nose. Will have microsurgery for that. Joint stiffness especially in hands and feet. Swelling of hands in mornings. Urine is more yellow. May be damage from chemo. Cannot get enough air when lying down(sometimes) Capillaries in shins burst. Looks like a rash. Does this make sense - I cannot walk as fast as I used to. It could be from weight gain of 20lbs. I feel I have to think about walking but I cannot think fast enough to walk fast????

[bobbiw]

Hello all
I am finding this post very interesting as I just finished my last Taxol 2 weeks ago and am now continuing on with weekly Herceptin. I have been wondering what if any side affects I may have now so this has been helpful to me. I have been on a disability leave from work and am wondering if I should now (since I am just on Herceptin) ask my onc to release me to go back to work. However what I am finding is that when I am at home doing my regular routine of housework etc I do pretty well BUT when I really have to use my brain it just doesnt want to function. For instance my husband and I went to see our accountant yesterday and I had absolutly no attention span and felt like crying I was so frustrated....could not GET what he was saying at all. At my last onc appt I told him that I had driven up to the gas pump to get gas and could not for the life of me figure out how to pump the gas. He said that may be due more to age than anything. Ok so I agree with him SOME, however, before all of this for god's sake I knew how to pump gas! I am going to have reconstructive surgery but have to wait 3-5 months after my last Taxol treatment. So I would only by back at work for a short time as it is. Oh all of these things to consider and decide on....it's never easy is it? Any thoughts?

[Karen t]

Hi bobbi,

I've had lots of time to think about Herceptin. Just finished #90 of my weekly infusions.

One thing that "got" me in your message was how many docs attribute things to old age.... Give us a break.

Being bombarded with chemicals has to have some effect on how the body and mind function. Just how much effect there is on memory has not, thus far, been established.

Based solely on personal experience, my feeling is that my particular types of memory loss are mostly related to stress. Many times I am too stessed or preoccupied to hear information in the first place so, of course, I won't be remembering it.

The other memory problem I have is inability to remember common words. I really think this is also stress-related. When a person is under stress, it's difficult to focus on things other than whatever it is that is causing the stress. This is good: It helps save lives in the face of grave or imminent danger. For many of us, however, the stress is underlying rather than imminent and tends to creep into all daily activity (a real nuisance).

I am not ashamed to be having problems like inability to remember words. After all the things that I/you/we have gone through, we are entitled to be a little frazzled and we are entitled to a little love and understanding.

My coping mechanism is to have a sense of humor. When I cannot remember a word, I substitute the word "bucket." Don't ask me how that word ever came up or how I can ALWAYS remember it, but it works! My husband has become "smart" enough to even figure out what word I really mean when I use "bucket" in conversation, e.g., "Could you hand me the 'bucket,' I can't quite reach it?"

I hope this encourages you to hang in there and to be proud and happy that you are alive and can even be thinking of going back to work.

Love you!!!!!! ^,^

[Cathya]

Hi;

Diagnosed stage 3c in October 2004. Postmenapausal.....for a number of years...I found once my periods ended I forgot all about them so can't remember when I stopped....lol. Following lumpectomy and additional biopsys started chemo mid January 2005. 4 AC, 4 Taxol. Tested for her2 and found to be borderline so began herceptin with the last taxol treatment. Am on Arimidex. I don't know my MUGA in the beginning but am tested every two months. I have been off herceptin 3 months. Originally for low MUGA of 42 (the previous two scores were 48 but onc let me stay on....he pulled me off when the score dropped again). The last test has shown my score to now be 52 but my heart remains enlarged and so he is waiting to see if this corrects before he puts me back on. I had a wee bit of swelling to my right hand (non cancer side) and my right foot during treatments towards the end of taking herceptin. I had weak nails which are still weak, and a runny nose...which is still runny sometimes now but not as often. I have various aches and pains in my joints but that continues and could be the arimidex or the biophosphanate I just started taking (can't remember the name right now). I take it every Friday morning (1x week) and am heading into my third week. I took herceptin every three weeks.....and REALLY want to get back on it.

Cathy

[bobbiw]

Karen thanks for your reply. I just returned from my weekly treatment and broke down and cried to my wonderful onc nurses...gees what a baby huh? But it felt good to talk about it. I too deal with almost every situation with a sense of humor but sometimes I get so tired of being the strong one and I guess this is one of those times.
Thanks again.
Bobbi

[astrid]

I had my first infusion of herceptin yesterday. Currently I am on NO other medication. I was tired yesterday due to the anxiety etc. Last night I had fever and chills. Fever reached 100.5 and I called the doctor. They were not concerned unless it went above 101. The fever is gone today and I feel dizzy but that is passing also.

[astrid]

Started Hercpetin June 14th and I am on NO other drugs but Herceptin. (will start tamoxifen today). I had bad headaches on day four and again on day seven. The head aches are so bad, my vision is blurred and I feel very dizzy. Feel fine today.

[simimom]

I finished my one year of Herceptin in Feb. 06 and finished chemo in July 2005. I attribute most of my side effects to chemo, but I still have neck, shoulder, back, and hip pain. I also have "chemo brain," numbness in my feet, hand and feet cramps (sometimes very severe), stuffy nose, can't sleep (or stay asleep), constipation, headaches, weight gain (around middle), and can't seem to get my energy back -- extremely exhausted by end of the work week and end of sleeping at least one entire day on the weekend. I do consider Herceptin a miracle and feel that it's saved my life -- dx with IBC in January 2005 and now according to path report cancer free!

[julierene]

1. Joint Pain!!

2. Nose Bleeds - just drips right out sometimes 2 times a day.

3. Chest tightness - feels strange to take a deep breath

4. Sinus pressure and headaches

5. Diarrhea

6. Weight gain

7. Eyebrows won't grow back after chemo

8. Pimples - pretty consistently right after treatment
9. Very tired after treatment
10. Have trouble reading, I've really had to slow down


Stage 4, 2nd dose of 3-week Herceptin 6mg/kg, NED, 31 years old

[maryb]

tykerb is the drug that supposedly crosses blood brain barrier...I've heard of epirubicin being used as an alt. for adriamycin...take care maryb

[Vanessa]

I have been on Herceptin since June 15th of this year, along with chemo. I started them at the same time, so I don't know for sure which symptoms are related to chemo and which ones are related to Herceptin. Some of my symptoms are weight gain, water retention, sinus problems, bloody nose, tight chest, anxiety or feeling wired, troubling sleeping or sleeping too much, fatigue, sore muscles and sores in my mouth.

[atdec05]

Hi all,

I've noticed alot of women have mentioned joint pain as a side effect. I've completed 33 of 52 weekly treatments, and over the past few months have started experiencing pain in my back, legs and feet. It feels like I imagine arthritic pain would feel like. Last week after my annual visit, my doctor ordered blood work to check if this is thyroid or arthritic related.

For women who are experiencing joint pain - do you notice more creaking and crunching? I hear crunching around my knees and shins when I go up and down stairs. To me, that sounds like arthritis. I started taking glucosamine, but my blood pressure has gone up (a known side effect) so I'm thinking of switching to glutamine.

- Anna

[Cathya]

I have noticed the soft fingernails and likely have other symptoms as well as I do get arthritic pains in my hands particularly. I don't really pay much attention to these as I don't know if they're from the herceptin, arimidex or actonel. However, I was taken off herceptin for four months and have just been back on it for the past three weeks....getting my fourth weekly treatment today. I was fine during week one (following the loading dose) but after my second treatment I started having dizzy spells. These would be getting up from bed or even as I lay there and I would almost fall over. I've never had them before and had about 5 or 6 of them over a weeks period. Naturally I was concerned about brain mets and so I mentioned them to the nurse during my last treatment and she sent over the on call doctor. We decided to monitor them going forward and if they weren't resolved within more weeks I would get a brain scan. My last CT scan (taken about 4 months ago) was clear except of an old brain injury I didn't know I had. In any case I have not been dizzy this week at all and so am assuming that it was caused by the herceptin. I had a muga done last Friday but no word yet from it so it must be ok I'm thinking. Hope this helps.

Cathy

[Carolyns]

Hi All,

Below is what I know about the timeline and my experience with BC and Herceptin. I don't have all of the specific details like some of you who seem to be so well educated on the subject. This is as much as I know. Thanks for the questions and answers, my doctor always seems interested when I report back to her what I read.

32 yrs old BC - 89 Rt mastectomy - CAF for 6 months ER+PR+ stage 1

42 yrs old BC - 99 Lt mastectomy - precancer foci (sp) no further treatment stage 1 again?


46 yrs old - 04 Hysterectomy and Implant revision


49 yrs old - stage 4 - bones, chest wall, skin - started with Femara in trial 50% chance Lapatinib or Placebo (Zometa once per month) for 12 weeks. Mixed response after 3 months. Switch to Herceptin / Gemzar weekly for 3 weeks (Zometa monthly). Could not tolerate Gemzar for 3 weeks on and counts dropped too low. Switch to weekly for two weeks with a double dose of Herceptin on second week and week 3 off. Very bad headache similar to a spinal tap headache after the double dose of Herceptin. Pain was like an explosion of pain to the head when I began to move or once I stopped after moving. This happened on the day after treatment. This happened two times. Changed to 2 weekly doses of Gemzar / Herceptin and week 3 Herceptin alone. No more headaches. Received Herceptin about 14 doses so far.

So far so good. I try to drink as much as possible (6 to 8 glasses of water) for the 3 days following infusion. I think this helps me.

Carolyn

[Carol E]

Hi,
I am new to this forum, but I just wanted to say that I was on Herceptin for 5 months, first four months every week, last month every 3 weeks, dbl dose, had runny nose, legs ache, and some rib pain (actually a lot) but it really wasn't to bad,
but unfortunately it didn't help me much, now I will be going on Taxol and Avestin, could someone please tell me your experience with these chemo's, thank you very much,
Carol E

[Quilter1]

Stage I BC. I took Herceptin every week while on the Taxol chemo cycle. Once chemo was done, I was switched to every 3 weeks for a 90 minute drip. I must say I don't know if the side effects I have are from Herceptin or the Arimidex I am taking. I was started on Arimidex immediately after the Taxol cycle was finished. I had 3 mingraine headaches during the Herceptin routine. My nose was not stuffy. It is actually the opposite. It is always runny. Memory is an issue. I had more short term memory loss issues after my chemo was done. Again I can't say if it is the Herceptin or Arimidex. I also seem to have spells of insomnia that still persist. Not every night, but several times a month. I just don't sleep too well. Always in a light stage of sleep.

Hope this helps you in some way.

[Becky]

I have soft fingernails and the skin on the bottom of my feet peel quite a bit. So much so that I get pedicures every 6 weeks (and I never got pedicures before).

My nose is runny and my vision is off. I also have the "can't find the right word" syndrome (which can be from Arimidex). I am tired, especially the week I get the Herceptin. I have been on Herceptin since mid June, 2005 but will end soon (Sept 29). I also feel that my allergies have gotten worse (but this may be coincedence).

I also feel my hair doesn't grow as fast as it used to (this may be due to Arimidex as well as it is a menopausal symptom). I also get chocolate cravings for about 24 hrs but no weight gain.

Kind regards

Becky

[Mary Jo]

Hello,


I can relate to the rib pain. My left rib area often hurts. I'm done with herceptin Oct. 11th and look forward to seeing what happens to my body post herceptin. God willing my body goes back to normal. Whatever the heck normal is. Haha!

I can live with any kind of pain though from all the chemo's/herceptin to be honest. It's better than cancer.

This was a good idea for others to list their symptoms. I was happy to read I wasn't the only one with rib pain (only left side) and occasional dizzy spells.

Mary Jo

[Ora]

I started herceptin in June and take it every 3 weeks. I had a reaction to first dose - chills & fever, but seem to tolerate it now and take benedryl and tylenol with my treatment. I am also on Femara. I think I can attribute some of my ailments to herceptin and some to the chemo. My runny nose, swollen feet, and dull pressure-type headaches are probably from the herceptin. My arthritis is much worse now in my hip and back, but I gained weight with everything so I know that affects my arthritis. The hot flashes are from the Femara and I take 37.5 mg of Effexor for that and it works pretty well. Since I had chemo first, I believe my insomnia started then but I still have it and must take a Xanax and an Ambien to sleep. My mental problems and toe/foot numbness also started with the chemo. Actually, I think my brain is working a little better now. After almost a full year not being able to read a book, I've finished two in the last month. Although I must confess I thought I was going to have to describe Ambien as "bucket"! I couldn't remember the name. I have had the "air hunger" too. I thought it was because of my heart, but it mostly happened at night or when I got into a hot car - it was over 100 degrees most of the summer. I got this tip from my dog. She's a fat black lab and when she pants she will put her face up to the fan. I tried it at night and it seemed to work - the breeze helped me gulp air better. I would just turn it on when I needed it. Herceptin is my wonder drug and I can manage all of these side effects just to be able to take it.

[Carina]

I am Stage IIIa, ER/PR positive and started Herceptin with Taxol once every 3 weeks. Started to get hives and itching on the second day after receiving T + H. Thought this was due to the Taxol. Then got an anaphylactic reaction (hives, tightness in throat and chest) 10 minutes after the Herceptin was started (1 hour drip). I was pre-medicated with Dexamethasone and Benadryl but still got the reaction. I was given more Dex and Benadry and the herceptin infusion was restarted. 15 minutes into it, I got the same reaction again. They stopped the herceptin and never re-started. I have not been given any herceptin since. and have completed Taxol on Sept. 8th. However, I continue to get allergic reactions. Not sure if it is due to the Taxol, Neulasta or residual herceptin or a combination of any or all. Spent several hours at Emergency due to an allergic reaction today. Going for allergy testing on Oct. 4th.

I spoke to Roche, distributor for herceptin in Canada, and they asked a number of questions about my reaction. My onc is trying to get information on others who have experienced an anaphylactic or other severe allergic reaction while taking herceptin. Roche was intially reluctant to release the data. The Roche rep did tell me that at least one patient has died from the reaction to herceptin, but a severe reaction is rare.

I am hoping to be able to safely get back on the herceptin. Thanks for posting this thread.

Carina

[Lani]

Herceptin is 99% humanized but there is still 1% of mouse antigens in it. Perhaps you are reacting to the mouse antigens as foreign invaders (which they are!)

At the Genentech stockholders meeting (I am not one, but attended with a friend who is) this year I asked if people had developed antibodies to Herceptin monoclonal antibodies (as such a phenomenon had been described with another monoclonal antibody being used for either rheumatoid arthritis or leukemia--I don't remember which at this moment, but can look up--which had altered its efficacy obviously in some)


The CEO of Genentech said it had not been described with Herceptin and because it was 99%humanized--although the antibody is "manufactured" or "cloned" within a mouse, what is being made by the mouse has 99%
" human" content--people had not reacted to that 1% of mouse.

I do not think they have had many cases of allergic reactions to the first dose to investigate. Of course, once someone has a bad reaction you don't want to keep giving it to them (at least not without some good premedications) and challenging their immune systems to provoke some life-threatening reaction in order to study it. I hope they can find some way around that and find out exactly what has caused you to react this way so you can benefit from herceptin. The good news is, from what I can gather from reading, lapatinib is a totally different kind of compound (not a monoclonal antibody, no mouse content, much smaller moledule) and should not cause a simiilar reaction. Herceptin can stay in your body up to six months after the last infusion. While this is not good in terms of your adverse reaction, perhaps it will give you some protection until lapatinib becomes available. I would also think they might be more willing to give you lapatinib once approved off label as you had shown yourself not resistant to Herceptin but allergic to herceptin and thus without an equivalent alternative. The FDA asked for fast track approval of lapatinib this week--hopefully it will take four months or so (wishful thinking!) if good reports come out at San Antonio. I don't know how Canada approves drugs, but perhaps GSK's compassionate use program could be of help.

I obviously have no expertise in this area (have merely educated myself by reading a lot of articles), but I hope something I have written has given you some idea to pursue or ask about, put your mind a little at ease or helped you in some way.

Best of luck!

[Mary D]

My EF is now 44%, down from a high of 67%. Can anyone out there tell me how low one can let it go before considering stopping Herceptin?
Thanks.
Mary

[tousled1]

Mary,

Most doctors stop the herceptin once your LVEF gets to 50. Then when you're off it a while your LVEF will come back up and you can continue the herceptin.

[Bev]

Mary D I thought it was 45 or a certain percent below original. Lots of people have taken breaks so that may be what you need to do. Hang in there! BB

[Bev]

Carina, Would it make sense to see an allergist to pinpoint the problem. They could tell if mouse is the problem. Herceptin is great but not if it kills you. Sorry they don't have all the answers yet for allergies. BB

[ElaineRyan]

I started Herceptin Weekly with chemo (taxotere/carboplatin), after 4 1/2 months of chemo and 7 weeks of radiation I switched to every 3 weeks herceptin. I just finished my one year of herceptin in August 06 and I opted for a 2nd year.

I hear everything everyone is saying about side effects but most of it sounds like lingering effects of Chemo drugs. They can be so damaging to your body, long term. I have reflux on and off but my onc. says its from chemo. I definatley have weakening nails but they are getting better. My hair grew Fast, I thinks this depends on your own personal make up and not the drugs.

I'm not saying that Herceptin doesn't have side effects that they don't acknowledge but really all I have experienced is a little tiredness the next day.

Herceptin is truly such a miracle drug that I can't imagine anyone not opting to take it if given the choice. It literally saved my life.

[janet/FL]

I had my last 3 week Herceptin mid July. One year of it. I never had A/C. I had taxotere and Herceptin 9 months after diagnosis.

I have waited to report side effects to try to determine what side effects might be from Herceptin, what from Taxotere (and the drugs given with that).
I definitely have more energy now that I am off Herceptin.

Although I have trouble sleeping, I have less than before and I think it will lesson in time. Same with the anxiety, but I still have some. Much more than pre BC.

Much of the muscle pain from the taxotere has left execept if I get really tired and even then, it is not as bad. It seems that Herceptn may not have been the cause though it may have contritbuted as most of it left only a few weeks after I stoped Hercptin. Bowel movements are much more normal.
Breast pain around site of operation pretty much gone.

I most two pounds on the taxotore, but gained those back and 16 more. I was always starved on Herceptin. Appetite out of control. Sweets, carbs, were my downfall. I have my appetite more in control and have lost a few pounds but have a good ten more to go.

My eyesight appears to be going back to normal. My curley hair is thicker than before. Perhaps it thined prior to BC diagnisis and this is more my normal hair. A great hair stylest who is aware of the effects of chemo has really helped me with it and now I look normal and not like a standard poodle!

And that is about all that I can recall right now. Oh, some of my memory is going back to normal. But I now realize the limitations of my mind. And don't believe I will ever be the same in this area. Perhaps I just see limitations more clearly now. I don't feel that I can do everything.
Janet/FL

[tousled1]

I started Herceptin only one week after my surgery and the plan was to do it every 3 weeks. Well, I got my first Herceptin dose and I experienced such severe side effects that I decided to go the every week dose. Side effects include, bot not limited to:

constant runny nose
severe joint pain
vision loss
hearing loss
constant dull headache
fatigue
insomnia
mood swings
soft/brittle/breaking nails (they were great during chemo)
cognitive thinking/reasoning problems
consistant low blood counts (get Procrit shots)

The headaches and joint pain got so bad that my oncologist sent me for a PET/CT scan and an MRI of the brain. Thankfully they both came back clean.

I took time off Herceptin since I was going away and really wanted to feel like a "normal" person. The joint pain and constant headache improved but did not go away completely. Everything else stayed pretty much the same. I was off Herceptin for 27 days.

I went back on Herceptin yesterday (September 29th). Got my loading dose and will go back again next week. After that I am going to again try the every 3 weeks.

I still have joint pain and pain in my lower right rib cage area so oncologist scheduled another PET/CT scan for October 16th.

I realize that without Herceptin us HER2 women would be left out in the cold, so to speak. I know that there are many women on this board who have been on Herceptin for a long time and some who are approaching the end of their year and are extremely anxious about going off herceptin.

My quality of life while taking Herceptin has been greatly affected (negatively) because of the side effects and I can't wait until my year of Herceptin is finished. And please do realize that's just my opinion for myself.

[lucky4x]

Hi Ladies,
Haven't been here in a while...summer was a nice distraction.
I am 4th stage( Mets to lungs), 4 time survivor in 6 years. Bilaterals and reconstruction. Her2 pos...estr. neg. Grade 3.

Aug 2005 started Navelbine and Her2 and continued on Her2 ( Herceptin) indefinately. No real side effects except for fingers, and nails...dry, brittle, skin cracking etc. I had other side effects before I took myself off the steroids ( who needs it?)... I sure don't!

The steroids are given hand- in- hand with most Herceptin/ chemo treatments for nausea. Well I was not nauseated with Herceptin, so I asked them not to give it to me.

Bye -Bye to the other side-effects... no more bloating, weight-gain, mood swings, hot flashes, joint pain...etc etc..... it was all from the steroids!!

So now I only have the dry, sore fingertips, and dry hair, my fingernails rip and tear easily, and sometimes cramping in my calves. They suggest if I am ever nauseated ( which I am not), to use Gravol...so one time on a long car ride ( directly after treatment) I used NON-DROWSY ( GINGERROOT) Gravol. It worked.

If those are now my only side-effects...I can live with that.

Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.

[lucky4x]

Oops... ps...

The runny nose is gone too! It was also from the Decadron ( steroids).
The blurry vision started with 1st rounds of chemo way back in 2000... I think for me its just old age (49).

[lucky4x]

Sooooooooo sorry... one more PS............

Herceptin treatments... have been on straight Herceptin since Jan 2006. I dont ever want to go off it, heart is good ... AND LUNGS ARE CLEAR!!

[lucky4x]

I asked my onc last time I saw him and he said it depends on where you started... for eg: if you started at 58, and went to 38 this might be a concern whereas if you started at 70 and went to 40 they might take you off it right away. It fluxuates with everyone... my onc says I am off the charts and he won't even consider my mugga right now... it reads 85, 78... back up to 80 etc... he says thats probably too high for a real true reading. I have been on Hercpetin for a year.

I hope this helps... (but I would phone your onc and ask him what he/she thinks). I really think it goes up and down.

[Yorkiegirl]

LuckyX you wrote<<Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.<<<



Never once did I ever have any steriods while on Herceptin. This is one drug they say doesn't need a steriod.

[lucky4x]

Hi.

I was told at my clinic that its "routine" to give steroids before/during the Herceptin... but that might be just here in Canada? I am not sure... but would be interested to find out because you are soooo right... you don't need it with Herceptin.

Thanks for responding.

Lucky

[tousled1]

Vicki,

I am on straight Herceptin -- no steroids -- no nothing except Herceptin. Only time I had steroids was as a pre-med with the Taxatore.

[Carina]

I went to see an allergist who specializes in desensitization to get people through chemo. He had not seen an herceptin allergy before but had heard of someone at Harvard who might have had some experience. Roche, the distributor for herceptin in Canada, have also shared some info. with my oncologist (2 cases) and hopefully this will give some insight into a strategy to be able to put me back on herceptin. So far lapatanib doesn't appear to be an option, even on compassionate grounds.

It is now over three weeks since Taxol and I haven't had herceptin since July 28th and I am still reacting. I was in Emergency last Friday in order to get the reaction under control. I am now on prednisone and benadry every 4 hours. I want to get off the prednisone as soon as possible but when I stopped taking it (after 5 days) the reaction came back by the 3rd day. I was really hoping that things would be a bit easier during the break between chemotherapy and radiation. Sigh...

Walked with my family and friends in a fundraiser for breast cancer reseach today. It was really good to be part of something positive and hopeful.

[lucky4x]

Hi there Carina.

Congrats on the walk.

Yes the sun came out for our walk in Burlington too.... so beautiful with all the changing leaves! I am so sorry you are having these reactions.... it must be horrible for you!

Please keep us informed as to what they find out about your reaction I would be very interested to know what triggered it.

Again, congratulations on THE RUN FOR THE CURE today!

Lucky

[vikkismom]

Hi,I am a new member here and i really need some info.My daughter was taking herceptin every 3 weeks to be completed in mid feb.07.In mid july she went into congestive heart failure.Her first muga scan was done after she gave birth to a healthy baby girl and came back good(67%) She started taxol/herceptin for 7 weeks then just herceptin.She had muga scan done after taxol/herceptin and it was 34%.But the results were late getting to her onc office and she had 2 herceptin treatments.She went into heart failure (20%)She is doing a little better now but every thing is on hold at this time.She is really unsure as what to do.Is there any studies about shorter treatment with herceptin?She has had left breast masectomy diag.stage 3 her2+ with 9 nodes positive.(invasive ductal)Also she has rads to go thru.Any comments or thoughts will be welcome vikkismom

[dawbs]

I feel so lucky reading of everyone else's problems. I've only had 4 Herceptin/Taxol combos so far, but I am feeling better each week and have virtually no side effects. (Slightly bloody nose and occasional pimples only.)

However I did have quite a weird infusion reaction with the first Herceptin. About 45 minutes into it I started to feel cold and within 5 minutes was shivering. This escalated such that I was trembling all over, even my teeth, so I couldn't even talk without biting my tongue. It was rather like a grand mal seixure, except I was conscious and laughing...it was so weird. I also had aching up and down my spine, legs and into my neck and the pain was worst at the site of previously irradiated spine mets. My oxygen sats, blood pressure and pulse all starting fluctuating, but I had no trouble with breathing or temperature, and I otherwise felt fine.

My oncologist said this was a "tumour lysis" response, not an allergic reaction, and that this reaction can occur rarely in people with lung mets (which I also have), apparently due to cytokine release. The symtpoms settled over a period of 45 minutes or so, after being given dexamethasone and promethazine, and I was able to finish the infusion (only about 50 mls anyway). The next two times I had premeds first and no reaction, and last time had no premeds and still no problems.

I felt it was a blessing. I had a mental image of tumour cells being fried and zapped and felt so priviledged to be such a good responder.

Has anyone else ever heard of this reaction?

Vicki

[Bev]

Vikkis mom,

There is the FinnHer(sp?) study. They did it for 9 weeks with good results. Either search on this site or the www for more info. Best of luck to your daughter. BB

[MJo]

My nails are breaking after seven Herc. triples. I also have pain in both little fingers and my ankles and feet -- extremities. In fact, sometimes the little fingers fell like they are going to pop out of their sockets. My last exam, the nurse practicioner wrote this down. She says she tries to collect symptoms.

But here is an experience that reminded me that Herceptin is not like taking aspirin, which is how some oncology nurses and some oncs seem to treat it. I had a very busy week at work last week -- the major annual fundraising dance and silent auction for my social services agency. I'm very involved with planning. I also had Herceptin Wednesday. Usually when I have Herceptin I take it very easy for a few days -- leave work early, lie down a lot at home. This time I told myself, "OK, if Herceptin is as side effect free as I'm told, let's try full speed ahead." Ended up with cold, fever, exhaustion, coughing, etc. In fact, I felt as sick as I felt when I got chemo. Possibly my blood count went down and made me susceptible to germs. Who knows? From now on I will be very careful when I get Herceptin.

[Her2nSue]

forgot to give my side affects from herceptin, which I have been on alone since end of April. Between herceptin and femara I experience memory loss, I lose things constantly and can't seem to relocate them, my hearing is not as sharp as before. Constant small joint aches, at times my fingers belong to someone else. Can't seem to do buttons, I get pretty fumbly. Fingers are extremely swollen in the mornings. Seems that the opposite hand (the right one) of the mastectomy is the one that seems more sensitive with the pain. Joint knuckles so bad I can't wear any of my rings on the right ring finger. I don't seem to have any swelling in my feet, ankles or toes which to me seems strange when your fingers feel so bloated. My weight also has gone up some. My thigh muscles hurt tremendously when going up or down stairs and found out last evening, also with dancing. As for body fatigue, has it been known to be any other way BUT tired, like you hadn't slept for days. I guess, it's still better than the alternative, still it can get you down having body, mind, hearing of an 110 year old. Just try to keep the humor up it does help.

Sue

[panicked911]

God, sue you sound like me. I am on arimidex instead of femera and also lupron which doesn;y help. I am curious about one thing ladies... does it make a difference in terms of severity of side effects whe you are on the once weekly or the triple dose of herceptain AND whe did the side effects start- how lig ito treatment.
I was on weekly from end of November 05 thru April - was handling it alright even thru rads util I took levaquin for a sinus infection - stopped that and went onto to triple dose and that is when the knees, thighs, fingers, elbows, shoulders really started aching swelling in fingers is relatively recent- memory loss- can't recall ( no joke).. 2 doses left --hopig some at least will go back.
any thoughts?

Susanne

[geraldine]

Hi Lani,

12th dec marks my 3rd year on Herceptin.. 2.5 yrs Herceptin only.

I was dx in 2001 after finding a lump on my left breast.. grade3...18/24 node pos. Had mastectomy followed by various chemo+ clinical trial + rads.

I was dx in 2003 with secondary b/c on the chest wall, same side and it was only then that I was told about Herceptin and that I met the criteria.

I have terrible itching on various parts of my body, especially on the scar. I suffer from sinus problems, weight gain, small ulcers on my tongue, eye sight deteriating ( my optician say my reading sight has not changed in 2 yrs but my distance has changed drastically, poor nails (allways pealing and breaking) and lately I have suffered severe cramping in my legs. I dont have headaches except for about 2-3 hrs after treatment. Last week I had the strangest feeling in my chest, just like a hundred needles stabbing. It only lasted about 10 secs. I will be going for an echo on fri, so hopefully I will find out, the reason..

I receive Herceptin every 3 weeks over a 1 hour infusion.

Hey I forgot to mention how scatty my brain is at times (this is an example) but I was putting that down to age (55 in jan)

Geraldine

[lucky4x]

Geraldine.

I was so happy to hear that you continue on Herceptin for 3 years. ( I know that sounds weird, but it gave me hope).

Leg cramps... I was told to increase my magnesium by taking mag/calcium vitamin and a multi vitamin with magnesium also. It has helped the cramps. I still get little ones in the mornings, but not the ones where you spring out of bed and try to shake or walk them off! Someone else told me she put a bar of natural soap in her bed by her feet... and it took care of the cramps for some strange reason! Worth a try.

The itching under arm on one of my scars is enough to send me through the roof! Funny... I never thought it might be Hercpetin...but ya, maybe it is!

I am also on one hour IV every 3 weeks. ( Going this Friday for onc checkup and chest xray and syma results and treatment).

Lucky

[ninness@ns.sympatico.ca]

Have been reading with interest the many side effects from Herceptin. I have had most all of them. I finished Herceptin treatments two weeks ago and am looking forward to feeling better. My Muga scan has gone down to 48 so am very fatigued all the time. I did have leg cramps at night but believe it or not I put a bar of soap between the sheet and mattress and I have not had a leg cramp at night since then. It is an old wives tale but many people have found that it works (actually found a testimonial to this on the internet). I used Ivory soap but any plain type of soap would work fine. Hope this will help some of you who have leg cramps at night. Believe it or not it does work!

-Nina

[Carol E]

Hi,

Just wanted to say that I also had bad cramps (feet and legs) tried the bar of soap a couple of weeks ago, my Mom suggested it from a friend, and I have not had one cramp in my feet or legs!! Also, if you have trouble with constipation, I tried a tea called Smooth Move, love the name, anyway it really works, it comes in fruit flavors, (didn't like the taste) and chocolate, (the best). Hope this helps someone.
Smile a mile,
Carol E

[Her2nSue]

Just browing over the latest posts and wanted to put in my 2 cents worth of what a great thing we ladies have here with all the information everyone puts out on what works and what doesn't and what other things to try to make our lives with cancer and it's aftermath a bit more easier and to realize that we are not alone or imagining our symptoms. They are real and we are not hypochondriacs, nor do we deserve the strange looks when we try to discuss our symptoms to the Oncologists and then get a brush off. They really should be involved in this site, so that they would have a better understanding of their patients. Just expressing my opinions while my mind is staying in one place at the moment. Thank you ladies for all that you do with your support, information, humor and just helping the rest of us get through the days.

Sue

[dskdrive]

I Had The Same Reaction. I Am Stage 2 With No Mets That I Know Of. They Gave Me Benedryl And Tylenol And I Settled Down And Was Able To Finish The Infusion. I Have Now Finished One Year Of Herceptin And Have Been Cancer Free For Over Two Years Now.

[tousled1]

I am on Herceptin only and I experience the following:

1. trouble concentrating and trouble with short term memory also trouble with finding words - I know what I want to say but sometimes the word just won't come out or the words come out mixed up and sometimes backward
2. severe joint pain - sometimes when I get up in the morning it feels like my bones are just going to snap
3. dry, brittle, peeling nails
4. fatigue (low blood counts)
5. continuous runny nose
6. slight headache (was sent for a brain MRI -everything ok)
7. itching - various parts of the body
8. deteriorating eyesight
9. hearing loss
10. insomnia
11. weight gain

These are the ones I can think of off the top of my head. I know some people may say the eyesight and hearing loss may be age related but I totally disagree. I didn't have any problems before starting Herceptin. Overall, I would have to say that Herceptin and I do not get along. Since on Herceptin my entire life has changed -- I'm not able to to the things I normally did. I started out on the 3 week cycle and thought if I went every week it wouldn't hit me so hard so I started every week. I could tell you how I would feel each day -- the only time I felt almost normal was the day before my treatment. Now I have switched back to every 3 weeks in the hopes that I will have more than one good day a week. Had my first 3 week dose 2 weeks ago so I go back next week. So far, I don't notice that it's any better than weekly but I'm going to give it a chance. I just want to feel somewhat "normal" and be able to have the energy to do things.

[Marilyn]

I've been taking Herceptin since July of 2001. When I began Herceptin I was also taking Taxotere and Zometa. I took this combination each week for 6 months and continued the Herceptin and Zometa weekly for 2 1/2 more years. Since that time I've taken Herceptin and Zometa every three weeks. I lost quite a bit of hair, my eyelashes and eyebrows during the 6 months of chemo. To this day my eyebrows, eyelashes, and hair have not come back. I have contacted Genentech about this and they have called and talked to me about it.


As far as other side effects I do have watery eyes and on the day of the infusion I am a little more tired and occasionally I have a headache that day. Otherwise I really don't have any complaints.

[Kimberly Lewis]

I love that we are posting these effects. It is such a comfort to know that I am not a hypochondriac (hopefully!) I am er/pr+ Her2 weakly positive, stage 3a, 7 nodes. diagnosed 5/05.
My side effects and if they lasted were;

1. Bloody, crusty noses. Almost completely gone now after 11 months on H.
2. Lack of mental clarity, forgetfulness. Worse than ever! I have a 70something friend and we compete for how many times during a conversation we forget what we are saying!
3. Rib pain, now gone..
4. achey feet and legs in early morning, late evening still...
5. rediculously peely soft nails still!
6. Tendancy to infections - difficulty shaking them even with high doses of antibiotics! Just had LAVH and my navel got infected from incision, 6 weeks out still yucky. Got a yeast infection that also is still there!!!
Anyone with that effect and possible help for immune system please write...
7. Most bothersome - breathing problems. When I was first infused the premeds made me very sleepy, every time I fell asleep the oxygen sensor beeped like crazy and they kept telling me to breathe. Same thing when I had all my surgeries.. like when I fell asleep I didn't breathe properly. I sense it when I am difting off now because I hear my blood roaring in my ears - I take a few deep breaths and it stops. Even during the day now I feel my heart start struggling and I take a few deep breaths and it stops. Now how is that for weird?
8. Herceptin emotional addiction! Once my Oncologist told me my year was up I went into a tailspin emotionally. Felt I was just not prepared to face life without my security blanket. Really funny thing was that Genetec gave out blankets w/Herceptin printed on them. I guess I will have to wrap up in that and get through this! No more tears now - I am facing a move and lots to do!

[Mary Jo]

Maybe it's too early to post here yet as I only finished herceptin 9 days ago. (October 11, 2006) Naturally, side effects wouldn't be over yet as I received my infusions every 3 weeks. So, I'll have to wait a while. However, I can say that for the most part herceptin and I got a long real well. I only had one MUGA scan at the 4 month mark as my oncologist said "toxicity normally occurs within the first 4 months." At that time my MUGA was favorable so was told I could continue. They watched me for symptoms and I never had another MUGA. I exercised throughout (2 - two mile powerwalks per day) wih no problems whatsoever. The only side effects I can report are some diarehhea - gas - and left rib/side pain. From reading other people's posts I see that the left rib/side pain is pretty typcial. There must be receptors over there huh? Well, whatever, I'm not complaining. I pray it helped me and that I will be disease free forever. (as we all do)

Mary Jo

[Jennid1]

Kate, I have all the same side effects as you and add lower back and hip pain. I also experience chills for about a week afterwards. I have been on Herceptin since 7/06. I also tried the weekly and went back to the every 3 weeks just to try and get a few days of feeling "Normal".

I thank God for these message boards because my oncologist keeps telling me that herceptin has no side effect.

[tousled1]

Jennid,

When I told my oncologist about my side effects she said "you shouldn't have any side effects with Herceptin." I told her she was wrong and that she should come to this site and check out all the side effects that are being raised. I too have lower back pain but I contribute it to my spinal fusion. Although since I started Herceptin I had to go back to my pain management doctor.

[Marily]

Hello Vickismom, hope I got that right??
I went into Congestive Heart Failure and went down to 21%. My cardiologist put me on medications and we gave it a rest with the Herceptin for about 8 weeks. We redid the muga and they watched and worked on my medication to correct the hearts problems. I now take 50mg Coreg twice a day (strengthens the heart) I was on Digitalis to help the heart pump better but off that now. I take Diovan and Furosamide which take out the excess fluid so the heart does not have to work so hard. I am doing fine and this last muga I was back up to 60% but it has taken me a couple years to achieve that. I was carefully watched on the Herceptin by my cardiologist and am doing fine now. during that time they also found I had sleep apnea, so I have a cpap machine and oxygen throughout the night. I seem to be walking and breathing fine. Get a good cardiologist on your team.. it makes all the difference in the world.
Hugs and good luck,
Marily
oh and I was on Herceptin about 31/2 years when this happened so watch carefully it does not always show dammage at an early time!

[elcalabrese]

Glad to find out I am not crazy

I have been on Herceptin for 4 1/2 yrs.
Side effects.
Finger nails split and thin.
Finger tips cracked (I now wear fake nails to protect them).
Toe nail fungus.
Can't sleep
Medicinal "smell"
Runny nose especially when I eat something
Horribly dry eyes
Vision problems especially after treatment
Memory issues
Trouble speaking - forgetting words or completely drawing a blank. Also using wrong words or thinking one thing and saying something completely different.
Muscle and bone pain
Bloating and weight gain
Digestion problems
Congestion
ringing in ears
Prone to stomach and sinus disorders
And now my hands and feet are peeling. They burn and itch and even slightly warm water feels like it's scalding hot.
el

[bobbiw]

Oh boy elcalabrese does that sound like me! I am very happy for the Herceptin and will certainly put up with the side affects dont get me wrong. But in my case it seems that it has also disrupted my ability to find gainful employment due to the cognitive stuff that I seem to have going on. I cant even imagine trying to learn a new skill these days or multi tasking or working in a fast paced environment. The madening part for me is that possible side affects such as these dont seem to be recognized by the medical community. AND if you are stage IIb and doing well physically, SS disability does not recognize the difficulties either.
Well one day at a time one foot ahead of the other huh.
Bobbi

[tousled1]

Since we have so many new members, I am taking the liberty of moving this thread up. I'm sure that the "newbies" might find it helpful.

[Doris]

Hi,

I've been on Herceptin alone since April 2006. At first it was weekly; then I switched to every 3 weeks. My symptoms are as follows:
- Diarrhea
- Joint pain, particularly in my hip. (I actually have lots of joint and muscle pain throughout my body! But since I have arthritis, it's hard to say what is due to the Herceptin. The hip pain began after Herceptin was started.)
- Fingernails that split and shred
- Intermittent dull headaches
- Increasing problems with finding the right word and with thinking clearly
- Runny eyes
I was diagnosed 12/05 with Stage IIIA, Her++, ER negative, cancer found in 4 lymph nodes. I had 6 wks of chemotherapy and 6 wks of radiation.

[dchips1]

I was dx stafe 4 IDC 1/06 now it is 1/07 and I am NED!!! Been that way since August. Liver and bone mets are gone!! Praise God and good drugs. I am a very active person, I have a blended family of 5 teens and a 6 yr old and I take care of special needs children, and work part time for the school as a nurse.
Timeline:
2/06 Mastectomy 3/9 nodes pos er/pr neg her2 pos
2/06 port placed
3/06 Taxol, carboplatnium, herceptin weekly x 3 then herceptin only for 6 months Zometa monthly (1rst two doses very sick 102 fever etc)
took neupogen, neumega, arasnep PRN
Good case of allergic reaction to carbo after the 16th dose
still on weekly herceptin
Good case of chemo brain!! Hot flashes and fatigue pretty much gone now
Brain still is not where it should be, Is this herceptin or chemo? Good question.
Finger nails brittle, peel MUGA at 62%-72%. I am going to get herceptin past a year, I feel like it has been the "juice of life" for me. I am NED and would like to stay that way.
I am going to continue weekly and I take coq10 and flax fish and a multivitamin.
My message to others with stage 4 is too never give up, be your own advocate!!! Darita

[Debra]

I have had 40 Herceptin infusions so far. I do them weekly. My biggest changes I notice and it started after Herceptin is the memory loss and how much more difficult it is to concentrate. It is a little scary at times. There are times I "question" if I called someone by the right name when it is someone I have known for years. I am also on tamoxifen but was not on that at the time I noticed these changes; just taxol and Herceptin. Other then that, some weight gain and a few aches and pains with the runny nose which, as many mentioned in this thread, crusts over at night.

[rinaina]

don't you hate it when a doctor or nurse makes you feel like your complaints of side effects are not valid just because they never heard of them? i am convinced there are things we just don't know yet about some of the side effects of herceptin or any newish drug because they haven't been around long enough to discover everything there is to know about them. no medical professional should poo poo any complaint we have about a possible side effect. it enrages me but since getting cancer i do not let it get the best of me. i simply tell the doc or nurse, "i know what i am feeling and if it isn't from the drug then what is it from? if they don't have an answer and it isn't listed as a known side effect, that doesn't necessarily mean it isn't from it. medical science doesn't know everything yet and never will. things change to quickly. that is my 2 cents.

[Emelie]

Lani,
Started Herceptin 1/10/07 as AC was not shrinking tomur. First round was OK. Second round with Taxotere had severe rib pain, hurt to breath and headaches.
Had 3rd dose yesterday and had headache waking up. I started with hot flashes, night sweats, insomnia when I started AC, so can not say that Herceptin is culprit, but none of these side effects have gotten better.
Let me know if I can help with responses. On leave from work right now and glad to help.
Emelie

[darra]

Hi
I am a sometime reader, first time poster. I finished my year Herceptin Jan. 8 and thankfully I can't say I experienced any horrible side effects. I definitely feel that my vision is worsening, I can be forgetful and am achy and stiff quite a bit. Ofh yeah, my previous long and strong fingernails are ridged and tear easily.

My question though is to those who have been off Herceptin for sometime....do your side effects go away as the drug wears off or are these permanent? All in all I am so thankful for this drug that will hopefully mean I never have to deal with BC again.
Thanks to all of you for your insight and wisdom, you have certainly helped me through this nightmare.
Darra
dx 10/05
t=1.2 cm, 2/12 ln +
her2 +
12/05-04/06 4AC + 12 T+H
05/06 35 rads
But I am so much more than my diagnosis!!!
Glad to be getting my life back!!!!

[Andi]

I had crusty nose, achy ankles when I first got up from laying down and the thin ridged nails. I took my last herceptin (my 1 year) September 13th. The nose cleared up and my aches went away, but my nails continue to be a problem. Due to a recurrence, I started herceptin again Jan 4 and the achy ankles are starting to come back, my nose isn't too bad yet.

[Susan McQ]

I was stage 2 er/pr neg and her2 +++. I did neoadjuvant chemo 4 AC's every 3 weeks, then 12 weekly Taxol + Herceptin. Completed Taxol in August of '06. I am continuing weekly herceptin, for a total of 1 year, just completed #33. All of my Muga scans have been great. I briefly stopped herceptin for 3 weeks after I had my lumpectomy in mid August.

Minimal side effects - dry skin - cracks on fingers, some vision changes. I don't have any other side that can't also be contributed to chemo.

Susan

[pennyvphoto]

After starting herceptin I noticed very severe joint pain around my left hip,it was so painful I found it hard to sit or sleep..has anyone got any recommendations for pain ,can it be cured by exercise,or by exercising whilst on pain relief will I be making it a lot worse.Penny

[tousled1]

Penny,

I'm still on Herceptin and since I started Herceptin I have been plaqued with severe joint/bone pain - especially in the hip area. My last three treatments I had them reconstitute the Herceptin with saline water. What a difference - no more pain! I get my Herceptin every three weeks. You may want to ask your oncologist about this.

[pennyvphoto]

Kate

thanks for your reply,as far as I can gather they already use saline to reconstitute the herceptin - it would be great to find out what is happening with the joint/muscles,the ligaments seem to be slipping and unable to support the sacro iliac joint,causing instability and thus pain-will attend the osteopath clinic tomorrow for acupuncture which gives temporary relief.

[tousled1]

Penny,

Here is how Herceptin is usually reconstituted.

HERCEPTIN is a sterile, white to pale yellow, preservative-free lyophilized powder for intravenous (IV) administration. The nominal content of each HERCEPTIN vial is 440 mg Trastuzumab, 400 mg http://www.gene.com/gene/products/information/images/alpha.gif,http://www.gene.com/gene/products/information/images/alpha.gif-trehalose dihydrate, 9.9 mg L-histidine HCl, 6.4 mg L-histidine, and 1.8 mg polysorbate 20, USP. Reconstitution with 20 mL of the supplied Bacteriostatic Water for Injection (BWFI), USP, containing 1.1% benzyl alcohol as a preservative, yields a multi-dose solution containing 21 mg/mL Trastuzumab, at a pH of approximately 6.

I don't know what it is, but I can tell you that since I'm having them reconstitute it with saline water only my bone/joint pain has diminished.

[tousled1]

With so many new members, I thought I'd bring this discussion up to the front again. Perhaps it can help the newcomers

[betlen5]

Hi, I am going through my 4th reacurrance and was on taxol/herceptin for 3 months and herceptin alone for 9 months and the cancer has returned and waiting on diagnosis for what to do next. Has anyone here had a reacurrance while on herceptin?

Thanks, Betty
New to this site

[atdec05]

Hi,

This is a link to a news article that explains why some women don't respond to Herceptin alone, and what treatment seems to work. It sounds like it's only available now in clinical trials.

http://www.medicalnewstoday.com/medicalnews.php?newsid=40964
- Anna

[Tonya]

I was diagnosed 9-02 with BC stage 1. Did 6 rounds of chemo, no rad. clear scans untill 10-06 with mets to the liver Her2 positive. I have had 14 rounds of Herceptin every week with Taxotere on 3 off 1. I have had the bleeding, runny ,congested, swollen nasal passage ways. The muscle around my eyes constantly quivers and twitches (very annoying). Fatigue is mainly noticable 3 out of 7 days. Memory and putting sentences together seems to be getting worse. Weight gain is about 10 pounds. I have some bloating and fluid retention by the end of the day.I have lesions on my tongue, mouth is kind of sore all over. I have back pain in the small and left side of my back. Hot flashes are really bad at nite. Some weakness in legs but I am still working and living life to the fullest. Thanks for all the info its nice to know you are not the only one having these problems. Tonya

[Tigerlily]

Hi from Australia. My name is Kim.
This support group is a godsend. I have a lot of side effects I feel my onc. brushed off - esp diminshed concentration, crusty nose, nails and hair affects, breathyness, hip pain, nech pain and tiredness. He feels my immune system is just reacting. Nothing more scary could be under the surface to due the how good herceptin is for my situation. You are encouraged to report aches and pains - then made to feel you're a nut for thinking somehting might be stirring below.

I currently on Herceptin every 3 weeks. Have done so for 5 months. Previously I had AC+ taxetere every 3 weeks for 4 rounds and Taxol every 2 weeks by itself for four rounds. Plus 7 weeks of radiation. My start to treatment was a mastcetomy in Dec 2005.

So wonderful to have contact with sisters in similiar situations and taking control of their dis-ease. It can be very isolating in the non BC affected world.

Thank you and regards Kim

Stage IIIa 4 tumors - grade 3 11/24 nodes Her2 3+

[Grace]

I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:

Runny, crusty nose (constant);

Dry cough (gets better at times but continuous);

Difficulty breathing at times, particularly first few days after an infusion;

Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day);

Weight gain (15 pounds since diagnosis; I've been on a strict diet for the last month or so and have not lost a single pound);

Swelling in feet and ankles (some days worse than others);

Nails breaking, with ridges (getting worse with each infusion); as a side note, my nails have always grown very quickly, to my annoyance; not any more;

Hair growing slowly (thick, but very very short). Stopped chemo at end of October; it is currently about one inch to one and a half inchs in length;

Memory, word use, ability to spell are all impacted. I'm a professional writer, previously with an excellent memory. When I now review emails, I find words that have no relationship to what I thought I had written; often can't even use a dictionary to correctly spell a word, as I can't even do an approximation;

Last MUGA scan (currently six months on herceptin) indicated that I now have hypokinesis of right ventricle.

[betlen5]

I can relate with Grace on the following:

I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:
Runny, crusty nose (constant);
Dry cough (gets better at times but continuous);
Difficulty breathing at times, particularly first few days after an infusion;
Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day); Memory, word use, ability to spell are all impacted.

I also had and still have even after being off Herceptin for 5 months; lower back problems, hearing loss, sharp pains in my ear drums and eye areas. I stay tired a lot.

Betty

[gin-tx]

This is my second episode of BC, first in 1995, clean and nothing showed on mammograms until I developed a different type of problem in April 2006. Went to breast surgeon who did biopsy, very surprised it was malignant. Saw a couple of onc who wanted to do aggressive chemo, was not happy with their treatment suggested. Had a bone scan and something showed on the scan, MRI revealed Stage IV metastatic cancer of the spine, so everything changed as far as treatment plan. Went to third oncologist and am so happy where I am. He recommended seeing the same radiation oncologist immediately who started treatments on my spine. Then had port installed and have had Herceptin and Aredia every 3 weeks since end of June 2006. Will probably continue with this regimen for some time. Have had more trouble lately with Aredia. I've started having chills from Aredia so they give premeds right away (benadryl and tylenol). I am on a multitude of other medications for blood pressure, acid reflux, but have noticed:
1. Significant change in vision, finally went to new opthamologist and got new RX for glasses, made huge difference.
2. Have had some bleeding from nose, rather heavy one day this week, did not mention to onc.
3. Have trouble sleeping, have tried 3 different sleeping pills, one did not work, 2nd pretty successful, third a maybe.
4. For the back pain from the tumor that is still there, radiation reduced some but it will probably never go away, the onc wanted me to try Vicodin, I fought it for months, tried it last night with 1/2 pill, did not help pain, could not sleep, and was dizzy and had headache until noon today. Will call dr on Mon.
5. No problems with fingernails, have pain in feet and they're icy cold at night, nothing new. Had that before.
6, No problems with strange tastes during or after treatment, but cannot eat during treatment. Thought of food makes me sick. Some people bring in burgers, etc. Smell really bothers me.
7. I have started to lose weight, weight stayed same until about 6 weeks ago, now I've lost appetite, can't eat much, and am losing weight.
Think that's about all. Keep in touch and let me know how you are progressing with your symptons.
hugs,
ginkott1@aol.com

[nitewind]

I've been on herceptin alone for three monthes. I finished all the chemo and I'm currently doing radiation. I'll be doing the herceptin for another seven monthes. Biggest change for me is my vision. I have a very hard time focusing, sometimes things go out of focus all at once. (Not fun when you're driving, I've had to pull of the road a lot, now I'm afraid to drive). Saw an eye specialist and he says I have dry macular degeneration, there's nothing they can do for it. I guess it will steadily get worse.

Also, lately, I have had some bowel problems, the dietician put me on a low fiber diet to help control it but so far, no luck! I still consider myself lucky if the herceptin is working, but how do we know for sure if it is? I ask my onc all the time "how am I doing"? He says you're doing well. Who knows?
Hugs to all
Susan

[Carol Carlson]

I was on Herceptin for a year ( every 3 weeks ) from June /05 to May0/6
I was 9 months out of standard chemo when I started--I am stage 2B

Noted side effects
!. stiffness and achyness esp. in hands in the morning, hip pain while walking any distance ( still have that ) could be arthritic.It would also take a while for my feet to get going in the morning... sometimes they didn't feel like mine.

2. insomnia-- never was a "good" sleeper but definitely worsened on Herceptin.
( in fact I still have a PRN supply of a sleeping med and take it maybe 2-3 times a week)

3 weight gain-- 10-15 lbs, lost it after I stopped taking Herceptin but it seems to have crept back on

4. the nails-- Still split and don't grow as long as before

5. I've noted some thinning of my hair and that has remained the same

6. fatigue-- wonder if that will ever go away... after my surgeries, chemo, rads and then a year of Her., just don't seem to have the same energy level
and I do all the right things ( could be my age.. I'm 66 ) an oldie in the group

7. mental status-- didn't notice anything remakrable there.... maybe I've always been a little " foggy"---- just kidding---- I'm sharp as a tack


Overall, even though these things are annoying, I would say that after standard chemo, it was a breeze.

Hope this helps.
There seem to be many common threads re: side effects.
And as someone said previously, sometimes my onc. would look at me as though... how could you possibly have these things wrong, they aren't listed
in the medication insert !!!
Now, perhaps, they will start to look at these symtoms a bit more seriuosly with collected data.

Regards,
Carol

[Val Pfeiffer]

I am now on Herceptin only quarterly. I had a triple dose on Thursday. I never noticed this before, but yesterday when I went to my spin class, I drank THREE bottles of water in one hour. I am very thirsty for a couple days after (which isn't a bad thing). I just found that strange, and I didn't notice it as much when I was on a more regular dosage. I have a few of the symptoms that you guys mention, but not nearly as bothersome as some of you have experienced. I have had no weight gain--same weight as always, which didn't change during chemo or radiation either.

[Gerri]

Hi All,

I have been waiting for the day when I would finally be done with my Herceptin treatments and it is now here! I was on the every three weeks plan for one year and had my final (I hope) dose on Friday, March 16. My side effects (not necessarily in the order of frequency or annoyance factor) are:

*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting

When all is said and done, this was a pretty easy road to travel. The year went by quickly and now I am looking forward to my "new normal".

Wishing you all good health!!

Gerri

[janet/FL]

Gerri
Your list was perfect and a "must read" for newbies. I had everyone of them except for "losing my eye brows." I am now 8 months since my last treatment and am happy to report most these changes--GONE !!
I am going to add it to the bottom of this list. If anyone would like to add more, I would think copying the list and adding it might be helpful to clarify all that can happen. And eventually the list could be posted by itself.

The only side effect I had that I would add--is insominia. And that too is getting better.
*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting
*Insomnia

[Brian]

My wife, Lisa, was initially diagnosed with IDC in December, 1991-NED for 10.5 years-Recurrance in liver and lung in May, 2002. She has had every treatment known to man since May, 2002-Has been on Herceptin since July, 2003 to which she has had a complete response. Was NED from July, 2003 to January, 2005 when cancer again appeared in old scar tissue in lung. NED again after surgery-Stayed on Herceptin throughout-Gemzar added for a few months-April, 2005-Lisa had a stroke while in Italy and a small brain tumor found-tumor was gamma knifed and gemzar continued-October, 2005 cancer discovered in liver where previous tumors were ablated. Areas again ablated and Xeloda was added to herceptin. Xeloda treatment ended April, 2006-Lisa has been NED since liver surgery in October, 2005 and has been on weekly Herceptin ever since.

SIDE EFFECTS-
1. Dry-Bloody nose.
2. Runny nose-Constant
3. Periodic muscle cramps throughout body
4. Joint pain in knees, elbows.
5. Muscle pain in arms
6. Muscle spasms in back.
7. Thin weak toe nails and fingernails.
8. Slow growing hair.
9. Fatigue.
10. Acid reflux and peptic ulcers.

Herceptin has been a miracle drug for Lisa, but although it is keeping the cancer at bay, the side effects have become burdensome enough to impose on her daily life. We have been able to control her nausea and muscle pain lately. We are working with the Docs to check blood levels of various chemicals to see if we can get some permanent relief from these problems.

Good Luck and God Bless to All!
Lisa and Brian

[hutchibk]

I have been on Herceptin since September 2005, sometimes with chemo, and sometimes by itself. I am currently on Herceptin until the cows come home, in combination with Taxol, every 3 weeks. Here are my top 10, but I think some of them may be exacerbated by the Taxol, as they weren't as acute when I was on Herceptin by itself...

1. Dry/scabby-sometimes bloody nose.
(Solution for me: antibiotic ointment on Q-tip inside nostrils AM&PM-
it's wonderful, healing and soothing)
2. Runny nose-Constant
3. Periodic muscle cramps throughout body
(Solution for me: I try and stay ULTRA-hydrated which really seems to help... and when I get a particulary mean leg cramp, I eat a banana which usually works pretty quick)
4. Joint pain in knees, elbows (Solution for me: motrin)
5. Stiffness after sitting and sleeping, especially in fingers and ankles.
6. Tired/heavy feeling legs and jerking/twitching of legs
7. Thin weak toe nails and fingernails.
8. Fatigue.
9. Acid reflux. (Solution for me: Nexium when needed)
10. Watery/drippy/teary eyes (Solution for me: Patanol eye drops)

[Allie1947]

I was diagnosed with ibc in Oct. 2006...started chemo in Dec. 2006, getting treatments every 3 weeks. Then started weekly treatments of taxol and herceptin in Feb. 2007. I'm in my 6th week...with 6 more weeks to go. During this time my hair has started to grow back in slowly...lost that after the first dose of chemo in Dec. My symptoms with taxol and herceptin are as follows:

aches in feet and legs, especially after going to bed
fatigue
brittle nails
dry skin
sinus issues
dry nose...with some bleeding
headache
body aches and pains
joint stiffness
back pain...which I attribute to a previous condition of sciatica, but maybe not.
insomina....
memory loss...often can't remember particular words, which could be related to lack of sleep, I suppose.

and ...something new...my heart seems to be pounding a little harder..and I find I'm feeling like I can't get enough oxygen at times. Will let Dr. know on Friday when I see him as this hasn't bothered me much before.

[SandyR]

Allie, by all means you need to get to the doctor....
While on herceptin your doctor should be monitoring your heart with a Muga Scan. Herceptin can lower your heart's ejection fraction for your left ventricle and you could go into a temporary heart failure.
If this happens, it is reversible by giving your body a rest from herceptin.
Good luck!

SandyR

[StillHere]

I never connected my running eyes to my Herceptin use, but now it makes sense as it has stopped since I had to discontinue due to LVEF of 40 last year. I just thought it was a cold, or sinus issues. Not that I had ever had eyes that tear up and run down my face for no reason before. It did not start right away. I was 5 to 6 mos into Herceptin treatment before I had the eye tearing thing. I have also had just about every symptom listed in above threads, but very tolerable.

[harrie]

Suggestion for the nose irritations: I had that problem. I thought it was from the chemo impacting the nose vessels causing the nose to bleed slightly, and also a little runny. It is a lot better now, but while I was having the problem which lasted over a month, I bought a nose wash (which looks like a little teapot and you use it to pour in one nostril and out the other). i would put a very diluted antiseptic mouthrinse (such as CrestPro Health, WITHOUT ALCOHOL) into the water. I also bought a nose spray to keep it moist and that helped a whole lot. My primary physican looked inside and saw some inflammation, so she recommended I use an antibiotic cream, applied with a q-tip, only at night.
I don't know which of the above helped the most, but the end result was significant improvement.

Harrie

[gin-tx]

Yes, all the symptoms you are experiencing are from Herceptin. This wonder drug sometimes is a pain to deal with but is still a wonder. It's kept me going for the past 9 mo. If my ins co would just pay for all of it, that's another issue.
I have constant runny nose, insomnia, joint pain, pain in feet at night, had acid reflux before but it's gotten worse, think that's enough. But I deal with it and try to keep going. Hope this finds you doing well, you've had a lot to deal with.
This is my 2nd episode of Bc, other was 11 yrs ago. But totally different types of tumors, the latest was much more aggressive.

Keep me informed of your progress.

ginkott1@aol.com

[janet11]

Re nails. I finished TCH (with Taxotere) in mid January (last infusion Dec 27) and I'm STILL having nails lift and separate. A new one started 2 days ago. My onc and I are definitely blaming the Taxotere (does Taxol do this too?), not the Herceptin. It's just such a slow side effect, I hate getting this MONTHs after finishing chemo.

But we don't think it's Herceptin at all. It's definitely a common side of the Taxotere.

[theresaw]

Well it is good to know that i am not the only one having these effects of Herceptin. Everytime i mention something to my doc she looks like i said some thing alien to her. When I told her my toe nails came off she told me I may have had a fungus..NOT! they still haven't grown in yet..

[gin-tx]

I think everyone is affected in a different manner. I have runny nose, which I take something but some days it makes little difference, difficulty sleeping, so take something to help me rest at night, when I don't I toss and turn all night long, no problems with toenails or fingernails yet, dryness in nose and nose bleeds (only happened a couple of times). And of course lots of fatigue in daytime, I usually come in from work as I work part time and sleep about an hour. Also I have a tumor on my spine that makes it difficult to lie on my back, so finding a comfortable sleeping position is not easy. Have had radiation, it shrunk some but cannot be removed because of location.

Keep me informed of your progress. I think this site is so wonderful to air our complaints, sometimes our families or the docs do not understand.

hugs,
ginkott1@aol.com

[harrie]

It is interesting to read all the various side effects. My BIGGEST complaint is the excessive salivation during waking hrs when I am not eating. Last night found sucking on sugarless Ricola helps a whole lot. My fingernails are starting to look like small bleeding beneath the nails. Insomnia....not me. I sleep really, really good. The few days i take the decadron, I might have a slight problem, but over the counter Sominex (1/2 tab) is all I need to fix that.
It is one wk past my last TCH tx and I can feel the fatigue. When I do some of my cardio at the gym, I can definitely feel the difference.

[gin-tx]

Dear Maryanne,

I have none of the side effects you mention. So far nails have been fine, salivation no problem, have lots of allergies, so take something for that. Biggest problem is I'm noticing I'm very tired for a couple of days after treatment, just slept a lot over week-end and watched TV, did not exert myself at all. Had no energy to do much. If I don't take something to sleep, I may sleep till around 2 am, then I'm up for a couple of hours, then tired the next day. I have other issues but they're totally different from yours. For the most part I think I've done fairly well. Now noticing how tired I get after treatment, don't know if it's Benadryl or the Herceptin. Keep in touch and let me know how you're doing.

hugs,
ginkott1@aol.com

[Adriana Mangus]

May I ask you about your bc. I was diagnosed in 1994 and am dealing with my 2nd bout with bc.


Will you be receiving Herceptin for life?
What type of treatment did you receive first time around?
Did you have mastectomy?

Any other information will be appreciated.

Thank you Gin-Tex

[theresaw]

I was diagnosed June 2006, left breast, her2 post. non hormonal. From July 2006 to Sept. I was on what I called the Red Death (sorry if it sounds bad) then from Oct 2006 to Nov was on Herceptin and Taxol, then Dec until April 2007 just Herceptin. Yes I had Mastectomy with reconstrutive surgery, the tram flap.
Can I ask you when your reacurrence happened. I am concerned about reacurrence because it is in my family. I know with all the Meds out there i shouldn't be worried, but I can't help but think about it.
I hope this was helpful.
Thanks

[Malena]

I finished the chemo on may 2006 with a 55% of FE. I started herceptin on June 2006. After only 2 infusions (every 3 weeks) I had a serious heart problem (FE 15-20%). I stopped herceptin.

[Adriana Mangus]

Dear Malena: I was devastated when I was diagnosed at age 38, but you? Oh God soo young. Have you heard or Tykerb? Maybe this new drug will work for you. Too bad you couldn't continue with Herceptin. I have been on it for the last almost 4 years in August..so far everything seems ok..I keep praying....I have also been taking Xeloda for the last 3 months due to the tumor growing back (little, nothing to be concerned about for now) and it appears that it's working. I will be seeing the onc. May 2nd. Keep the faith and pray HARD.:)
Stay Positive....Best of all to you...

[Caroline UK]

Sherri, when I was having the chemo drug epirubicin I experienced the same thing and like you, I absolutely hated that side effect. I just wanted those horrible chemicals out of my body; it felt like an invasion, even though I knew it might be saving my life.

I was advised by an oncology nurse, on a charity helpline here in the UK (CancerBackup), to try sucking strong peppermint sweets ('candy' I think you call it!) WHILE the drug is being infused. To my amazement it worked very well. The only trouble is that now, 8 months after chemo finished, I can't stand peppermint! But that's fine. I don't know if this will help with Herceptin. Good luck with it, thinking of you.

[gin-tx]

Dear Adriana,

This too is my second bout of BC, first in 1995, only had lympectamy and radiation. Second episode was April 2006, I had a biopsy that surprised everyone as it was malignant, surgeon did not expect this. He did wider margins and also had sentinel node before surgery. One node malignant, did not have mastectomy but am presently getting Herceptin and Aridia. Aridia is every 6 weeks, other every 3 weeks. So far so good, I see surgeon again in June, he may decide at that time on radiaiton but don't know at this point. Hope this finds you progressing well, keep me informed of how you are doing. As far as getting herceptin for a long period of time, don't know, that will be the onc decision.

ginkott1@aol.com

[Malena]

Dear Adriana,
thank you for your words! Yes, I was quite young when I discovered cancer but I was not afraided! My first thought was: there are a lot of people suffering in this word, now I'm in this group! And I have to fight!

[skye]

Hi everyone,
I'm just on my second dose of Herceptin and feeling very underinformed as to what I was in for.
First, I had a lumpectomy Dec. 2006, 2.1 cm tumor Stage 2, 0 nodes, ER+ PR- HER2+ FISH score 9.
Started 4 two-week cycles of AC and Cytoxan Jan. 8, then 4 two-week cycles of Taxol. Started Hercepetin on the third Taxol 9 days ago, and had my second Herceptin (alone) yesterday. Third one is coming up next Monday with my final Taxol, then I should be going to every 3 weeks. I'll do rads mid-May-June.Herceptin continuing til next April. My initial MUGA was 71.
I had what seemed like a mild cold last week, finally realized it was the Herceptin. The Taxol symptoms were so severe (like previous) that I didn't notice any new Herceptin symptoms...until Sunday night when I started getting chest pains that lasted through yesterday, 2 days. I tolerated a half-hour infusion yesterday with no benadryl or steroids, but when I got home my legs felt like they were burning and rashy spots broke out on my shins. They are better today. However today I feel pretty well for a Taxol week.

I'm very dismayed at the prevalence of side effects, does EVERYONE gain a lot of weight with Herceptin? Do the se's seem to be cumulative?

Thanks everyone else for sharing. - Skye

[Karen t]

Hello Skye,

I have been on Herceptin for nearly three years and have lots of annoying symptoms but perhaps not the ones you mentioned. More things like runny and crusty nose, splitting nails, some aches and pains. It does not seem like the symptoms have worsened over time; in fact, my nose has improved - still runny but not crusty and no more weird smell. It would be convenient to attribute weight gain to Herceptin but I have started being more careful about my diet and exercise and am actually starting to drop a pound or two. I think my earlier weight gain (eight pounds) on Herceptin and continuous chemo was possibly tied more to my not feeling like exercising and my tendency to indulge in food "treats" when I was feeling stressed out. Others may have a different experience.

Best wishes,
Karen

[Grace]

Karen--you're the first person to mention the "weird smell." I wondered if I was the only one reluctant to mention that very definite side effect of Herceptin. Glad in a way that someone has finally mentioned it, so I know I'm not imagining it.

One recent change, perhaps side effect of herceptin,is a strange taste in my mouth. Also, certain foods and wine taste unpleasant.

[skye]

Thanks, Karen, it's good to know the effects may lessen, and that the weight gain isn't hopeless. I had that sense of strange smells and tastes, lost my taste for wine and chocolate, during AC but it went away after starting Taxol and so far has not recurred. It sounds like new symptoms can crop up at any time with Herceptin treatment, however. Why is it that the docs seem to be in such denial over these things? - Skye

[Grace]

I've been working on that one for a while, i.e. "Why is it that the docs seem to be in such denial over these things?" I know mine is, and although I like him, it's extremely annoying when he or his nurse gives me "the look!" Before cancer, I hadn't been near a doctor in five years so I certainly know I'm no hypochondriac. So, my theory is this.

If they acknowledge all our complaints about Herceptin side effects, they might have to reconsider recommending it as a treatment, particularly for women who have Stage 1 cancers. Since many of those who recommend herceptin to early stagers believe it may be saving lives, it's probably easier to just discount what they think are minor ailments. I could understand that. However, the reason I find it annoying is that although I know that some of my complaints are minor, I want them recorded somewhere so the next woman who says she's having these side effects will feel validated. And also, some of these effects may have serious long-term consequences and if the doctors and drug manufacturers are not aware of them, how can they track them in some meaningful way.

Anyway, that's the only theory I've come up with to date. Anyone else out there?

[gin-tx]

Dear Skye,

I'm curious about the half hour Herceptin treatment, did they give your entire treatment in 1/2 hour? It takes 2 hours to administer Herceptin as my body cannot tolerate it any faster. One time I developed this wierd cough, the nurses said it was from the Herceptin being administered too rapidly so they slowed it down. I take Benadryl and tylenol before a treatment which is given by one of the nurses. I have not had any side effects like you have experienced. Only thing I have is a constant runny nose. My aches and pains were there before Herceptin so I can't say if they are from the medication. I am not getting the other drugs you mentioned at the present time but who knows when my onc may change my medicaitons. I hope you continue to do well, keep me informed. We're all on this road together and need support.

ginkott1@aol.com

[skye]

Hi Gin-Tx,
Yes, they gave the whole Herceptin dose in half an hour, with no Benadryl or Decadron. The first dose was given in an hour, after my Taxol, along with 50 mg. Benadryl and also the Decadron, so I didn't have near the reaction. Those rash areas have just turned into little pimple things, which are still somewhat itchy. And if my feet get hot at all they get terribly itchy which is something I've never experienced before. Anyway my next Herceptin will be with the Taxol again, and then alone after that. I'm still glad I can take the Herceptin however. It would just be nice to really be told all the possibilities ahead of time. Thanks for the encouragement, it so helps to have peers in all this. - Skye

[harrie]

SKye,
I just received my weekly dose of herceptin today along with my 3wk interval of taxotere (that takes one hr to infuse) and carboplatin (half hr). My herceptin is always given at a 2 hr infusion time. Since they know I tolerate herceptin well, I only receive the premed of decadron and benedryl on my chemo days. The weeks inbetween when I receive the 2 hr herceptin only, I do not need the premeds. If I did had a harder time with the herceptin, they would probably continue the premeds with the herceptin also.
Harrie (Maryanne)

[skye]

Harrie, your infusion takes two hours? I wonder why mine is so speedy, more than ever. Will you switch to every-three-week Herceptins when you are done with the TX? I'm hoping to do that, need to ask my onc on Monday. - Skye

[harrie]

Skye, I don't know why yours is so fast. I am wondering if that is why you are getting the reactions. I took my 5th round of chemo today and my next one in 3 wks will be my last. After that I go every 3 wks for herceptin at triple the dosage each visit. This will continue until it makes one yr.
How many treatments of herceptin have you had already?
harrie

[skye]

Two so far, third coming up Monday, then hopefully I will go to every 3 weeks too with it. I'm thinking the speed may have caused my reactions, also. Perhaps "haste makes waste" applies to Herceptin infusions as well as other things. - Skye

[harrie]

I would assume so also (your theory on doing it fast).

Skye, you know, I had a situation with my oncologist in the beginning. It was in regards to the dosage of the chemo. We had a run-in with it and at first he gave me a very negative reaction that stressed me out somewhat. But with further communication with him, we were able to resolve our issues and I ended up making a negative situation into a resolved situation.

Hang in there. Go with whatever you feel is in your best interest, whatever route that may be. I have always been very proactive with my choices and it is just amazing how things will work out for the best. I firmly believe that.

harrie

[pamk]

I was "officially" diagnosed in Jan. 2004 (biopsies began in Dec. 2003) with bilateral bc - DCIS on left, invasive on right with positive nodes, HER2 pos. Had dose dense AC and then Taxol. Was offered Herceptin in Feb. 2006 - why so late?! Started in April (insurance issues, port put back in, etc.) I am scheduled for my last treatment on Tues. April 24. Have heard from other patients and also read that some new research is suggesting 2 years on Herceptin is better than 1 - anyone heard about that?

Now for my original question - has anyone developed asthma with Herceptin? Of course, I was told, at first, "this is not a side effect of Herceptin - we've never heard of this" - therefore, I must be imagining it?! I went to a pulmonologist - amazingly I DID (and still do) have asthma! And this dr. feels it is definitely the Herceptin.

I also have the joint pain, muscle pain, and severe cramps in my leg muscles. I have also put on 50 lbs. since my original treatment (steroids) and am continuing to gain weight - wonder if it is the decadron pretreatment my pulmonologist requires, and also the Advair I now use on a daily basis?

My pulmonologist also just did blood work - my onco does not do anything except tumor markers!. My platelets, lymphocytes, and total protein were all low, and my glucose is up (127 - always been way under 100)

Any comments would be appreciated!

[skye]

Thanks, Harrie. I'm certainly going to insist they slow down the Herceptin, altho I have a feeling they will also suggest it, and also that I get the Big H every 3 weeks rather than weekly. It will be tricky enough every 3 weeks during rads, when I have to drive 30 miles in the opposite direction every day.
Skye

[cabaker]

I have been on herceptin since November 2006. I feel terrible. A lot of muscle pain in back and legs. I walk like a grandma! Need pain killers to sleep at night. I'm wondering if all of this is worth it?

[Andrea Barnett Budin]

I'm thinking maybe I'm a rare bird. I've been on Herceptin since Nov '98! (With Taxotere (Sept '98 thru May '99). Every 3 wks till Jan '02. Now triple dosage every 3 wks. IS ANY ONE IS THIS BOAT WITH ME????!!!

I feel very fatigued. My red blood cell count keeps dipping below 12 into the low 11s. They give me Procrit (now Aransesp) and I feel perky. Slowly, I go down hill and find myself in need of Aranesp. DOES ANY ONE OUT THERE HAVE DIPPING HEMOGLOBIN #s????????? My doc has tried to find the cause and now calls it CHEMO-INDUCED ANEMIA. And I haven't had "chemo" since '99. It's 2007!

And now there's a whole controversary w/Medicare and most insurance cos denying NON CHEMO PATIENTS Procrit or Aranesp!

DOES ANY ONE KNOW ANY THING RE THIS ISSUE? I'm feeling awfully lonely and afraid, desperate and down. That's totally NOT who I am. I'm fighting for my life here. HEEELLLLLPPPPP!

ANDREA

[Marily]

Andrea, I have been on Herceptin since 2000. Sometimes I go up to normal with my bloodcounts but most of the time I remain under the norm. I started doing chi gong, an exercise form of tye chi, and found that when I do it regularly it has made a big difference in the way I feel. I have not taken meds to bring up the counts, my Dr feels that I should make my own body do that. She runs a blood count before every dose of Herceptin. They watch for Potassium and other levels also. That seems like a must because they base whether I get my Herceptin on my blood counts. I was doing wonderful for many years, having my Herceptin run in about 1/2 hour and than I was out and on my way... Somewhere in the past year I started developing a reaction to the Herceptin, so now I take it double diluted and over 2 1/2 hours and my body tolerates it better. I started at stage IV, 7 years ago and I feel the Herceptin has been my saving grace. So when I get tired of it all... I just think I am alive and still living life with happiness and love. It puts it all into perspective again. Don't give up. Just sit down and discuss things with your onc, ask questions why he does not do blood counts.. and is he willing to check this for you? If he is not willing talk to your primary care and have her or him watch the counts and the ejection fraction of your heart. I have my PCP get all tests from all my Doctors and she is the one who so to speak, captains the ship. You need someone to be in controle the main part of the wheel, to speak.. She gets the whole picture and gets to me immediately if there is a conflict since each doctor only sees a bit of the piece and she sees the whole me. Hope this helps
Hugs Marily

[Judy Smith]

I have been on Herceptin for 1 and 1/2 years. I began with Stage I BC and reacurrance now has me at Stage III. My side affets include nail splitting, dry and splitting skin around nails, feet and some leg cramping, and joint pain (a little rib pain lately also). I feel fortunate to be feeling as good as I do and I am thankful that we have Herceptin to help us fight this disease. Hearing about others side affects has helped me calm myself when I feel something new and want to put a lable on it---Thanks everyone for posting.

Judy

[atdec05]

Hi Judy,

Did your recurrence happen on Herceptin? Did you have Herceptin when you were Stage 1?

I was stage 1 and had a recurrence noticed during my last month of Herceptin. I am now doing rads and will then do Taxol + Herceptin. The doctors think even though my recurrence happened on Herceptin there may be synergy when given with Taxol. So I'll end up with 1yr 3mos. worth of Herceptin

I had joint pain that is improved because of Glucosamine & Chroniditin. Also had elevated blood pressure that seems to be going down. Maybe exercising again is helping.

- Anna

[gin-tx]

Joint pain from Herceptin.

Yes I have lots of back and leg pain plus am dealing with other back issues. I told my onc nurse that I feel like I have flu type ache all over my body. He gave me a printout of the medicaiton, side effects which also listed uncommon side effects. I hope going thru this is worth it. My dr wants to send me to a pain mgt dr, don't know if I'm willing to go that route, tried similar treatment before and it did not work, plus very expensive.

Keep me informed of your progress. We have to be supportive of each other.

ginkott1@aol.com

[hutchibk]

gin - check out the thread about Neurontin on the main board from last week... I wonder if that would help you with the joint pain?

[harrie]

I was having some muscular fatigueness. Kind of hard to discribe. Like when you workout your muscles hard, but it seemed to linger. Not exactly sure if it is from the chemo (TCH) or herceptin. But I found eating more bananas made it better. Maybe my potassium was being depleted.

[hutchibk]

I eat a banana EVERY morning - and often in the middle of the night if I have a really bad leg cramp. It relieves BAD leg cramps for me within about 5 minutes. Bananas are amazing!

[kat in the delta]

Sometimes I think these Oncs. are afraid of their own mortality and death so they do not answer any questions...and then again, they also may not want to weigh the pros and cons because there may be more Cons vs a chemo. Then, they wouldn't make any $$. I think we all need to be proactive in listening to teleconferences and looking into our treatments and --like here--talk to others going thru similar treatment of their c. By the way, there is a conference on the internet tonite or evening at 7-ET, 6-CT....at HeathTalk.org...Someone is answering ?'s on the aftereffects of Chemo. It may be HEALTHTALK.com,or org.....check it out...kat in the delta

[Andrea Barnett Budin]

Boy, can I relate to deep muscle pain! Arms and legs. Like you've been beaten with a bat and left in the street. I even had it years after finishing Taxotere. I read that some of you wonderful ladies had only slightly running noses and drippy eyes and splitting nails. Some have known the incredible fatigue I had, and still do to a degree. When I mentioned to my onc that I KNOW IT SOUNDS WEIRD BUT I STILL FEEL THAT DEEP MUSCLE PAIN IN MY ARMS AND LEGS AND I KNOW IT'S BEEN YEARS SINCE I HAD CHEMO, he said, Not at all. A number of his patients make the same comments. I decided OKAY! Maybe that means the Taxotere is still beating the hell out of any lingering cancer cells.

You've got to put a positive spin on it. I would do the "freight train" drug again, since it stomped out every one of my multiple liver tumors in '98/'99 and I am still NED. Of course I didn't know the aggressive chemo was so named because you feel like you were hit by a freight train when you take it. I just thought I have a highly aggressive cancer (4th stage, 9 cm in the breast to begin with, in '95) and HER2+ into the liver and moving fast (according to CT scans and such) so -- hit it with the strongest tool they have in their arsenal.

I would hold on to the bed and move carefully to the wall, then to the next area to grab a hold of. I would put one hand on the shower wall, just to psychologically keep myself from collapsing to the floor. I'd only shower when my husband was home. I crawled up the stairs. I sat when talking to people, feeling my legs giving way. I held on to posts or pillars while waiting, or my husband's arms if available. But I got some makeup on, blush and lipstick and some eye shadow, my wig, my earrings and rings and a nice, neat, comfortable outfit and flats. I looked great. Or so I was told. You can't be sick. You look too good. That made me feel "normal". I had a smile on my face, because I KNEW I was going to survive, despite the odds. The joy and harmony of that knowing was apparently visible to all I encountered (when I managed to venture out of my bed, or out of my house). I met friends for dinner with Paul, to get him out with people. We'd talk and laugh and hug and give each other I love yous. That was all very healing! Laughter, love, hugs, people you truly care about -- that's so therapeutic!

Focus on healing and see yourself far into the future. Be good to yourself. You deserve that. Love yourself, and live with your heart full of kindness, generosity and gratitude for your many blessings. That's my best advice.
I was fifty when first dx and now have lived to greet and know 5 grandchildren! When I turned 60 Paul and I went to Hawaii. I had it in my head for a year that I would go parasailing. ME! Terrified of heights, bridges, driving into the city, spiders and palmettos bugs. I wanted to get as close to God as I could to shout THANK YOU! Thank you for my life. For my husband, two daughters and grandchildren (I had 3 at that time)! And I wanted to say loud and clear my personal mantra that I kept repeating (mostly as a goal) -- I AM STRONG, BRAVE AND DETERMINED!!! The guy in the boat that pulled me (and Paul) along, in tandem, took a picture of us. I keep it in my "brag" book that I carry with me of my children and my children's children. I was full of bliss and serenity.

So, I don't know when you count from, initial dx in '95 or mets in '98 -- I AM A SURVIVOR, a walking miracle -- and SO CAN YOU BE. BELIEVE.

Much love,
ANDI

[bailey]

Ladies - I am overwhelmed with what I'm reading about everyone's reaction to herceptin. I am Stage 4 mets BC - I started my chemo, second time around in 2003 for mets to the lung and liver. With the chemo I also was given herceptin. Once off the chemo at the end of 2003 they kept me on herceptin and my last one was last Wed. I would go for herceptin every 3 weeks. At no time did I have any side effects. I just turned 54 in Jan., I have always had nail growing problems so I just keep them short now, the dry eye syndrom can also be from menopause and there is a eye drop product called Soothe which I use about 4 times/day and helps keep my eyes moist, for any dry skin I always moisturize my body after a shower with body cream, not lotions as they are not as hydrating, I work out in the gym each morning - 5 days/week which includes spin classes 3 days/week. Yes I'm tired at times but I push myself to workout because I know I'll feel better when it's over and also I have the joint problem but that's from the Arimidex and that's why I continue to work out to keep my joints moving. I had gained weight after chemo but have since lost it - 18 lbs. by eating 3 meals a day and 2 little snacks - I eat healthy and stay away from alot of carbs like breads and pastas but eat alot of salads and fish and grains but of course with Italian my favourite food I eat it at least once per week. I enjoy a good glass of red wine each night and sometimes 2 on weekends. I guess in alot of ways I just didn't even want to know about the side effects because when I know about them I get them so I just say I will not have any. I wish I could have stayed on the Herceptin, it was easy for me but now will be starting tykerb/xeloda next week. Alot of the weight gain can be caused from the craving of carbs but I truly believe that the exercise has helped me so much. I do an hour/day and before I go to the gym I get up at 5:30am to walk my dogs then off to the gym. Like I said, I am tired but afterwards I feel great and have done something wonderful for my body. I also take 4000 milligrams of fish oil/day - spread out 4 times/day - a good high quality fish oil - helps with the immune system and keeps the skin moist. Along with that I take 1 400 mg. of Folic Acid but I divide it up into 4 pieces and take a 1/4 with each fish oil. I feel great!! I hope this helps someone.

[Chrissy]

I have just started Herceptin along with Taxol. Had bone/joint pain for about 3 days, but it has gone away. Have a drippy nose continually. Have second treatment this week.

[bailey]

Chrissy - not sure why you have the drippy nose maybe from the Taxol. I had no problem with that on Herceptin - could it be allergies at all? Just a thought?

[skye]

Hi, if you look at the official Herceptin side effects, a "flu-like" condition and or drippy nose is very common for the first week of Herceptin. I didn't know it at the time and thought I was getting a cold that just never developed, then I looked it up and went A-ha! It disappeared as the week went on but can recur at times from what I understand. Keep those Kleenex handy! - Skye

[gin-tx]

Dear Judy,

I think every person has different side effects. I have insomnia, body aches, constant runny nose, headaches, but no problems with nails or cuticles. I have been on Herceptin almsot a yr, this is my 2nd episode of BC, first in 1995, had lumpectamy and radiation. This was much more aggressive, Stage IV metastatic with tumor on spine, have had radiation to spine, lungs, now in holding pattern. Due for CT in a couple of weeks. At this point no spread to lungs or liver but tumor not decreasing either. Keep in touch and let me know how you are progressing. I hope you continue to do well and some day there will be a cure for this dread disease.

Hugs,
ginkott1@aol.com

[bailey]

Good luck with your scans - stay positive - you have done so well.
When I was on Herceptin they told me I would have aches etc. - I found the one thing that really always has helped me was working out and I do it at least 5 times/week in the gym, eliptical, spin classes, weights, but I keep by body moving as much as possible. As for the drippy nose, I have bad allergies so I'll just go with that but it's nothing I can't deal with - it's always going to be something I guess but different for everyone.

Stay positive and full of life everyone.

[Nora B.]

Thanks so much for doing this, Lani! I am so happy to read these posts and find I am not alone and not a hypochondriac! Are you going to try to synthesize the data and publish it somewhere?

I am Stage IIIb, finished chemo in July of 2006, and finished my year of Herceptin in April 2007. Received my herceptin every 3 weeks. My side effects started while still on chemo and my onc attributed them to Taxol, but they continued after I was well over with Taxol and they continue to a lesser degree still, a month after I've finished the herceptin.
Major complaint has been joint pain, particularly shoulders and knees. Some nights if I sleep on my side I can barely lift my arm in the a.m. for the pain in my shoulder. Legs cramp/hurt when I get up in a.m., or after have been sitting for awhile. Walk around like an old lady some mornings. Also alot of rib pain (so much that I insisted on a scan, thinking it was mets) that sort of comes and goes. Also it has turned my pre-existing acid reflux into a nightmare (constant heartburn/burping no matter what I eat). I know my vision has gotten much worse since this whole thing started, but that might just be age (I'm 44). Menopause brought on by the chemo in Feb. 06, have had hot flashes that I thought might be due to the herceptin. Have been very fuzzy-headed, too - attributed that to chemo brain. Slow growing hair and nails. Cracking skin on my finger tips. Mouth sores and bad taste in my mouth. Yeah, I do sound like a hypochondriac, don't I?! Really, the worst side effect for me has been the joint aches and pains. I know it's a small price to pay for this wonder drug!

Nora

[Lani]

Have you tried asking to have your oncologic nurse mix up your herceptin with normal saline instead of with the benzyl alcohol-containing vial that comes with it? Several on this board report less joint pains when that is done.

As I don't know your weight, and therefore not how many vials you use, this is easy if you use only one vial's worth. Otherwise, some have asked to have one vial mixed up with Normal Saline and the other with the normal diluent
(this is because the rest of the vial must be used by someone else due to the high price of herceptin, and if the rest of the vial is not used immediately some bacteria could grow in it because the purpose of the benzyl alcohol is to be a preservative and antibacterial I believe.

Not yet sure who I might pass along the info from this thread to...

[Nathan]

Lani,
I've learned so much from this site and I've only found it today!! Thanks for posing the question. I currently work for Genentech and although Herceptin can be a life saving drug for many, there are a few side effects to it. My wife is Stage IV with mets to her liver, lymph nodes in her neck and chest and her bones and has been on Herceptin for 3 months now.
Her side effects are nausea and vomiting, exhaustion, dry mouth and slurring of speech from time to time. She also shakes sometimes which I think might be seizures. I don't know if this is from the chemo, she's on two currently, or from the Herceptin. What I have witnessed personally, is the fact that this drug has saved many lives and that although the side effects of the drug can be bothersome, if given the choice, I'd rather be alive than dead.

[gin-tx]

Dear Skye,

So glad you have done so well with Herceptin. I too have drippy nose, constantly. I sometimes forget about it. When I think of it it seems to start in again.

I too have some side effects but feel lucky I have things I can tolerate. No itchy feet, by end of day I am just exhusted though. I come home and try to sleep for 30 min. Some days I wait too late to lie down, get busy with phone calls, etc. I'll be glad when I'm done with treatment, am getting real sick of it since it's been a yr.

Keep in touch and let me know of your progress.

hugs,

ginkott1@aol.com

[skye]

Hi Gin,
Yes, the nose is still dripping. The only other symptom seems to be a general sluggishness but I still feel much better than I did on Taxol. Feet have stopped itching too. I think I can do this! And I did get my onc to switch my schedule to every three weeks instead of weekly, thank goodness.
Glad you are doing ok, too! - Skye

[mabrooks]

I just started Herceptin on May 22nd. I finished mammosite radiation in mid April. I will start Femara in a few weeks my tumor was ER+ and Proges.+. I was lucky enough to not have to have any chemo. Due to my Her2neu 3+ status my onc recommended Herceptin 1 every three weeks for a year. The only side effects I have had are a runny nose and I seem to bruise easily. No nausea, no achy muscles.

[Andrea Barnett Budin]

I have the feeling the Taxotere side effects I mentioned (in post #188) is being confused by some as side effects from Herceptin. A HORSE OF A WHOLE DIFFERENT COLOR, or however that old saying goes. Herceptin is a walk in the park.

PLEASE NOTE -- I posted today on WHY STAY ON HERCEPTIN -- and -- CONTROVERSIAL SUBJECT. It seems impossible to find where these messages landed, even for me, intentionally looking for them. If you are interested, please look for them under SEARCH at the top of the page, or under my signature and find all postings. (I am still trying to figure out how to post a NEW THREAD. Dumbfounded on that one!)

ALSO PLEASE BE AWARE -- there is a Soul Sister who posts under the name Andi and her signature is simply Andi. That is NOT me. I am Andrea Barnett Budin (called Andi by Friends).

Andi, not me, has posted today and is in dire need of all our prayers. She has chosen to go off all treatment as the ca is everywhere and docs have nothing but bad news. I respect her wishes to live the time she has left in peace. That is a personal choice. Andi is a fighter, like me, and hopefully you. I have asked if it is okay to pray for a miracle to come to her. Andi can use all the prayers we have to offer. So please do what you can for her. She needs all our support.

Sending loving, healing energy to All my daring, darling Soul Sisters... ANDI BB

[gin-tx]

I have been on Herceptin and Aredia for almost 1 yr, have constant runny nose, muscle aches, but feel very fortunate I have only those problems. I have dealt with insomnia, which I had before I started treatment. I'm sure there are others but can't think of them at this time. My dr said I have 'chemo brain'. This is my second episode of BC, first 11 yrs ago, had radiation and lumpectomy, this time is more aggressive and also have a tumor on my spine that I had to have treated with 18 radiation treatments before they could start the Herceptin. I feel blessed for each day I have, still working part time, and am thankful to have a job with good benefits.

Keep me informed of your progress. We have to support each other to fight this battle.

ginkott1@aol.com

[kat in the delta]

I have been off herceptin for nearly a year after doing 12 weekly treatments(6 with taxol and 6 without weekly), then a larger dose of Herceptin every 3 wks for a year....MY MEMORY IS NOT BETTER !!! It only gets worse...and worse...... go to healthtalk.com and listen to an talk a few months ago... with some radiologist..and MDs.
What is your MUGA score.... My onc would not give me my last 2 heart scans----- which were called"rested-gaited"(MUGA?) Heart scans....
The last score on mine was a 48....--
I saw that 55+ was normal
--DOES ANYONE KNOW ??
PLEASE E-MAIL ME, OR RSVP ON THIS SITE...

kat in the delta

[kat in the delta]

I also forgot to mention that I have brown spots that go up my ankles like socks... appearing since being on Herceptin, and that my ankle swell even tho' I am thin and taking a fluid pill.
My Dermo. said it was from poor circulation..and the brown spots were iron deposits..anyone want to comment on this..?? please rsvp Kat in the Delta

[MagsB]

Hi All,

I have been on this site before, but for some reason, I missed this thread - which was exactly the thread I was looking for!


I was diagnosed in Sept 2005, HER2+, ER/PR+, Stage II, age 27. I've had a mastectomy, reconstruction, AC & Taxotere chemo, am a year into Tamoxifen and recently started Zoladex injections to stop my ovaries. I started Herceptin in Oct 2006 and should have been on it for a year. However, I had my last infusion on the 29th May, as I was my Onc thought that quality of life issues prevailed over the benefits of completing the full year of Herceptin.


I've had a number of side effects that I thought I was imagining! I had complications with my reconstruction and it took a full year after my surgery for the wound to heal. 2 weeks later I started Heceptin and the wound opened up again... Now that it's been 5-6 weeks since I had my last infusion, I think the wound is starting to heal again. I have also had severe fatigue; severe cracking of the skin in my hands (I've have contact dermatitis for years - but it's never been this bad - so much so that I found it difficult gripping the steering wheel or holding a pen); generally my skin healing from minor cuts is very poor; I have a lot of back and shoulder pain; I have the runny/crusty nose; I get a lot of blood blisters and ulcers inside my cheeks and lips; within 6 months, my eyes changed prescription and now need glasses to drive and watch TV - I never wore glasses before; I‘ve had 6 months of acid reflux, which as almost gone now that I have finished Herceptin. I also get leg cramps, hot flushes, vaginal discharge, have difficulty sleeping and my memory is as bad as it was during the chemo, but I think these last effects are Tamoxifen/Zoladex side effects?

When you read back though all these effects - individually they are all minor, but all together, it’s been a nightmare. As Herceptin is so new to be used in early stage BC treatment, the Onc was no help in preparing for these issues. You know chemo is going to be awful, so you are prepared for it... However, with Herceptin, I thought I should be fine and went back to work part-time, which has been really hard. I'm glad that I was able to get Herceptin, but equally, I am glad that I have finished. I just hope that the effects start to decrease soon - I seem to be keeping the plaster companies in business with the amount of plasters that I go through each week for my cracked hands!!

The other thing I have found difficult throughout my Herceptin experience is the fact that no-one seemed to listen to me... You would think that with such a new drug, the doctors would listen more carefully to us, even though, intellectually, they believe that we should not be experiencing these effects. It took 9 months to get my Onc to listen to me…

Anyway, I'm off the Herceptin, so hopefully my quality of life will improve...?

Thanks for reading my rant!
MagsB

[Andrea Barnett Budin]

I AM ON HERCEPTIN SINCE '98. I get ev 6 mnth ECHO cardiograms. You must be over 50 (Ejection Fraction). I take many supplements to help w/the memory thing and boost the imm sys. I fnd 8 mnths of Taxotere stayed w/me for yrs. I wld say to my onc, I know it sounds crazy, but I still have dp muscle pain in my legs and arms just like when I was on Taxo. Not crazy, he said, other patients have reported the same thing, w/lingering side effects. The end of chemo is the end. The gd news being, I pray, the lingering eff on the bad cells remains.

My onc has put me on PERFUSIA (WHICH IS ARGENINE 380 -- ONLY 1 PILL A DAY, to keep my EF up). You can buy it cheaper, but he prefers the quality of that particular brand. My admittedly long supplement list and to which I attribute much of my "success" -- is in VITAMIN D thread, I think. Otherwise check my posts in general -- for Spiritual upliftment and more.

Docs should listen to you, despite what you'e ON! No side effects are minor or worthy of being ignored!

I had tram flap reconst w/mastec and never had a problem -- Taxotere and Herceptin, Shingles and all the nastiest of side effects aside (from the Taxo and Shingles NOT from the Herceptin). I do have a lowering of my red bld count (HGB) and when it gets 11ish they give me Aranesp. (Used to be under 12, but new rules.) That $7000 injection makes me perky again and keeps me up for mnths. Again, read my supplement list mentioned above for some real ENERGY BOOSTERS + improved brain function from my onc/supllement expert.

MOISTURIZE, MOISTURIZE, MOISTURIZE. Head to toe, including hair, 2X a day, every day! Makes a world of difference. Vasoline, or Ayr oitment for nose dryness. I use CUREL on feet, body. I use Clinique Deep Comfort for hands at least twice a day! Occasionally Sudafed for drippy nose, but generally only when eating and a tissue is needed. My immune sys and energy have improved w/the onc's suggestions --- Phyto Formula, NADH (see list under other post). Could be in 11.3 HGB and shaky thread! Poor healing for me too. No back or shoulder pain. That could be stress. I do take Effexor (anti-depressant). Used to take Zoloft. This helps tremendously. Though never was a pill popper, bc changed that. My doc tells me YOU SHOULDN'T HAVE TO SUFFER. You don't get extra points for suffering. So I decided to love myself and be extra good to myself.

I take 1 Ativan a day, at night (mood elevator, relaxes the 100 mph brain). I deserve a good night's sleep at the very least. Aids in healing (studies show a good night's sleep is essential to good health) AND in functioning the next day! Otherwise I'm useless and miserable. Use sleeping pill as well. Sounds like a lot of pills, and I wish I didn't need them, but w/them my QOL is vastly improved. So seems like a no brainer to me. YOU MUST TAKE GOOD CARE OF YOU, without overdosing, of course, under the guidance of a medical professional.

Leg cramps have gone. Used to have to jump up and press on the ball of my foot for a few seconds and it went away. Hurts a lot, but easily omitted. I do take a muscle relaxant (Flexerol) nightly as well. Maybe that's why that's vanished. No more reflux, but did take Prilosec and it helped that issue. No bld blisters in mouth (except from Taxotere). My eyes do get worse but I'm a lot older, and others on chemo have reported this. I had excellent eyesight until around 42. Then needed glasses, like most that age. Dx at 50 -- 12 yrs ago. See my signature for my med hist.

Yes, Tamoxifen can and does have many side effects. Those who tk it for 5 yrs and stopped only then noticed how much better they felt. Address ea side effect one at a time and try, w/a gd, caring onc to remedy ea one! You owe that to yourself! You've been through hell and back and you deserve a heap of respect for not crumbling ino bitternss!

Herceptin is not a chemo, and doesn't get enough respect, but I tell my docs that -- I'M IN UNCHARTED WATERS HERE. NO ONE KNOWS WHAT COMES FROM WHAT WITH THIS MONOCLONAL ANTIBODY, SO DON'T DISCOUNT ANY THING I REPORT. I'm a guinea pig, writing the books that will come out on this. HELP ME. IF YOU DON'T HELP ME, WHO WILL.

I did see Pegram (and Slamon) on a trip out to Calif. They're the developers of the drug and Slamon discovered the misbehaving, defective gene that is responsible for 20% of bc. The SMART BOMB they developed targets only that messed up gene, leaving other cells alone, letting us keep our hair, BUT... Potential heart problems -- so ECHO every 3 mnths, then 4 mnths, then 6 mnths, NOW I've graduated to annually. Due in Aug. Herceptin is mostly a cake walk. A highly tolerable chemo/monoclonal antibody. When my doc gets snippy and says You're not on chemo, I say, I know -- I'm on a monoclonal antibody. Where exactly is the monoclonal antibody room? I keep winding up in the chemo room with all the other chemo patients. SOMETHING TO THINK ABOUT, DOC.

The energy thing is the major prob for me w/Herceptin and now that's been greaty improved w/ the supplements!

What are "plasters"???????????????

If your onc won't listen to you, I'm sorry to say -- you need to find another, more compassionate doc! You owe that to yourself, with or without Herceptin, just in general. Anything less is just inexcusable behavior. Where's their humanity for God sake????

Glad you felt free to rant. Any time. We're all here for one another.

Sending loving, healing, happy energy your way... ANDI :)

I hot flash since I'm 42 and hate it. Take a # of things to relieve it. Ea contributes a tad. If I stop any one, they get worse. Went to endrocrinologist finally who said could be indication of high bld sgr, and so it proved to be so. Now on med for that, caught before becoming diabetic, but clinically high -- in normal range now w/med. Memory way better w/supplements recommended.

[Heart Sutra]

I have also had side effects from Herceptin. When I discussed them with my onc. he said no it's from the Taxol. My last Taxol treatment was April 17th and I am still experiencing these side effects:

1. Joint Pain!!! (Hips, Thumbs, Feet heels only, Shoulders)
2. Fatigue
3. Eye site changed (needed new prescription)
4. Depression
5. Weight Gain
6. Hot Flashes (Bad at times, maybe 20 or 30 a day)
7. Chemo Brain

Not complaining. I'm glad we have this treatment available. Just wished my doc didn't look at me like I have ten heads when I tell him about it.

[bailey]

Ladies - I'm sorry to hear about your Herceptin side effects. I started on Herceptin in 2003 so it's not a new drug but I am now on Tykerb as they found spots on my lungs but I'm doing fine. With Herceptin you do get muscle and joint pain but for me it was not too bad and I attribute that to my exercise routine. I am in the gym 5-6 days/week and do 3-4 spin classes/week. I don't always feel I want to go and work out but I know it helps with the joints and overall health. I also drink tons of water, eat alot of protein and good healthy carbs. No butter or alot of fats and sugar although I do splurge and enjoy wine. Not sure about the spots around the ankles but if it's circulation you need to get out and walk 3 miles/day or do something active for at least 45 mins/day.
As for the memory loss, that also comes with menopause if you are in it but you need to keep your mind active so I"m not sure what you do for that - read, crossword puzzles, whatever but it does get better.
Kat - Your Dr. HAS TO GIVE YOU that info. He has no right to keep it from you and I would push very hard for that into or just go to wherever you had it done and request a copy from them but it is your right and your Dr. needs to be reminded of that.
If your skin is dry go and buy some vaseline petroleum jelly and after your shower or bath put it all over your feet and then put socks on - do it every day, do the same for your hands at night and put cotton gloves on - again every night. Get pedicures every 4 weeks. Use creams instead of lotions as creams are higher in moisturizing.
I know what you are feeling - all of you. I was first diagnosed in 2002 with BC, 2003 spread to lung and liver and okay till this March and now on Tykerb and Xeloda which are pills and doing great! There will always be side effects with everything to some degree but you can do it.
Another great thing to take for dryness, 4000 mgs. of good quality fish oil pills with EPA and DHA - get the 1000 mg. each tablet and spread it out throughout the day - take 4/day. It's amazing for your skin and just overall health. I live in Arizona and have been through alot of treatment and my skin is as soft and smooth and moisturized as can be - I am 54 and always get comments on my skin so if I can have it living here in AZ you can too.
I hope this helps you all - keep me posted and send more questions and hopefully I can help again.
Sending positive energy and prayers to you all
Barb

[Andrea Barnett Budin]

EPA & DHA NEED TO BE BALANCED. That's what my onc/supplement expert says. He also pushes Neuromins. + I take E 400 X 3 -- good for skin, heart flashes, ummune sys, inhibits metastases, decreases tumor burden. This amnt of E does not interfere w/my cholesterol #s remaining gd. That's important. So cardiol says fine.

ENDING CHEMO DOESN'T MEAN THE SIDE EFFECTS END! Docs say within 3 mnths tops you should be gd as new. My exper -- yrs later after shocks. May therefore be a bit confusing what's coming from what. But, please keep that in mind. My typing in above post may not have made that clear.

Yes, Vasoline/socks helped heals. Clinique helps hands. Curel body. Then the face, of course, whatever works for you, be it baby oil, or Sheisido or whatever works for you. Day and night.

[kat in the delta]

Bailey,
It's not that my Onc. didn't give me my last 2 or so scores.. HE just REfused to have the HEART SCANS even DONE on me !! -He never ORDERED THEM !!!--just wanted me to get the HERCEPTIN....even when I asked him over & over..
Now, I have poor circulation and swelling ankles and these horrible brown spots/patches running up both ankles !! IF I get a scratch.. I feel like I am on FIRE on my legs.....
ANYONE ELSE WITH THE BROWN SPOTS or patches on legs....?????
Did any of you have a Muga or Heart scan when finishing Herceptin ??

I use aveeno and also Aqua4 creams --esp. the legs..

Kat in the Delta

[Andrea Barnett Budin]

Honey, I think you may need t get advice from a CARDIOLOGIST. Swollen ankles AND you're on diuretics, poor circulation -- these need to be addressed! Your onc should have recommended you follow up w/these symptoms! I don't know about the brown spots, but -- how are your red blood cell counts?????????? (In *normal* range?) Get a copy of your last two blood tests.

Do they do an every 3 mnth comprehensive blood work up as follow up? ANYTHING not within NORMAL range needs to be discussed further. Please do not let swollen ankles slide. It could be a sign of a problem.

When was your last MUGA/ECHO? The cardiologist may want to do another, along with an EKG. You must be proactive and take good care of yourself. If you have an onc who is oblivious to these important matters, you need to move on. These symptoms are very concerning, not to be negated in the least. Call today for copies of all your reports. Fax a signed piece of paper, if need be, to free your records, which you are entitled to legally.

And make an appointment with a well-regarded, highly recommended CARDIOLOGIST. Please, Kat.

Sending loving, caring energy your way... :) ANDI

[kat in the delta]

Thanks andi,
Will call for all records/go there now....you are right..kat

[harrie]

For a brief time after my chemo treatment ended and I started the 3 wk herceptin regimine, I was getting slightly swollen ankles. To ensure it was not my heart I had a echo done which turned out normal. It could have been capillary leakage syndrome from the chemo, but the edema was on the slight side so all I did was watch my salt and elevate my legs and then it cleared up. I have not had it since. I have been off chemo for almost 2 months and have had several treatments of triple dosage herceptin alone.
Maryanne

[Andrea Barnett Budin]

Please stay close and let us all know what's happening with you. You are very much in my thoughts. So glad you've got a mission in your head, and are tending to business for your wellbeing! Sending loving, healing energy... ANDI :)

[BonnieR]

I have not read this entire thread. Not sure that I want to scare myself too much prior to beginning Herceptin! But at the same time, wanting to be prepared. My question is, despite the side effects, have you mostly been able to go about daily life? I have travel plans that involve my driving and wonder if that is a good idea if my mind may be cloudy or my vision affected. Do the symptoms show up right away or gradually? I realize everyone is different. I would be taking H solo, no chemo...

[harrie]

Bonnie, I have been on herceptin only for 2 months now and it is a breeze. I am really good and pretty much back to normal from chemo. I, like you, was worried about the side effects from chemo (oops...I mean HERCEPTIN) alone after reading about all the problems other people had encountered. So I started a thread a while ago asking for those who experience little to no side effects at all from herceptin alone and there were quite a few who responded.
So far, knock on wood, I have also experienced little to no side effects from herceptin.
Good luck.
Maryanne

[BonnieR]

I appreciate your message. Very encouraging. IF I take Herceptin (the jury is still out!) it will be my only IV drug. No chemo at all. Only Femara.

[Gerri]

Bonnie,

Herceptin was a walk in the park compared to chemo. Since you are not going through chemo I can only tell you that the side effects are annoying more than anything. You should go ahead and read the posts to see what you may experience. I finished my year of Herceptin in March and slowly but surely the side effects I experienced are subsiding.

Good luck! Believe it or not, the time will fly by!

[astrid]

I finished my year of herceptin in May of 2007. I had quite a few side effects that were not listed in the printed material for the drug. My blood pressure rose from 130 over 70 to 155 over 85. It is back to 130 over 75 at last check. My eyelashes fell out every three months over the year. My hair grew really slow while I was on H. But the worst part was the headaches that I started to develop the last few months. I am not prone to headaches and I would get headaches that put my in bed for several hours, a week after my treatment. Have not had a headache since I have been off. I also had to take my infusion for over an hour every time or the headaches the day of infusion would be bad. I had to have a driver to take me home because I would tire all of a sudden. My drive was an hour and I could not risk it. When I got home, I had to go to bed. The bad side effects did not really start until month 10. We quit my H one treatment short of my year protocol because my reactions were getting worse. I did not realize how bad I felt until I see how good I feel now that I am done.

[mabrooks]

Bonnie:
Had my third round of Herceptin last week - still no side effects except a bit of a runny nose. I am not getting any chemo either - just starting Armidex. Good luck.
Mary

[BonnieR]

Thanks everyone. I am posting again in order to include my profile with my signature....

[Nora B.]

gerri - i've been browsing through this thread looking for anyone who is still experiencing side effects months after finishing herceptin and i saw your post. if you don't mind, what side effects are you still experiencing? i finished in april and my joint aches and pains and swollen feet and fingers actually seem to be getting worse...
nora

[Lani]

Couldn't access your profile. Are you ER+ are you getting antihormonal therapy, are you postmenopausal, have you had your ovaries out?

The effects of chemo are long term and may have thrown you into premature menopause. Estogen deprivation can be hard on the joints and that may not improve for that reason after herceptin is stopped.

Knowing all these other factors helps one put together a picture of how people do on and off of herceptin to help guide others.

Let's see if others "pipe in"!

[astrid]

I completed one year of Hercpetin on May 22, 2007, almost two months ago and today I noticed my eyelashes are falling out again and I still have to keep my finger nails super short because they split.

[Andrea Barnett Budin]

My hairline never returned with the 2nd round of chemo. My hair is way thinner and weird, like it's not mine. I want my widow's peak back, or at least I want not to have a receeding hairline, or a *high forehead* all of a sudden. I want to put my hair back with a headband like I used to, only now that isn't *normal* looking.

I have 17 eyelashes on the top of my left lid and 14 on the top right. I have 6 eyelashes on the bottom left and 8 on the bottom right. Not that I'm counting...

I have NO eyebrow! They didn't grow back after the 2nd round of chemo (mean old Taxotere that did the dirty work of annihilating every tumor in my liver, but...).

I now have a mustache.

I never could go without shaving my legs, even midst chemo and being totally bald.

I'm just saying.

Astrid's post gave me a chance to whine a bit. I thank God for the gift of every new day! I live in gratitude and love, elated to be alive. But, I'm just saying...

I want my thick long lashes back that everyone used to ask, Are those YOURS? I have to draw and create eyebrows every morning, another little reminder that cancer's been here. Then I inform my body -- NO MORE CANCER! STAY WELL AND HEALTHY!, with as much passion and resolve as I can muster. All of which is obviously the good news. But sometimes complaining is so relieving...

Thanks for listening. Sending loving, healing energy to all my Soul Sisters, hoping you're hairy wherever you want to be and most importantly STABLE!

ANDI :)

[astrid]

Andi, I see you said Flushed Tamoxifen down the toilet. Do you think it hurt you more than helped you?? I have spoken to my ONC about my tamoxifen concerns, but she feels it is the standard of care for pre menopausal women. I signed up for a study for pre menopausal women. The arm I got was tamoxifen alone. I feel good, so I hate to screw with it. I am only 17% ER and PR + and HER2 + 3.2.

[Andrea Barnett Budin]

Hi Astrid,

July '95 was old school, different vocabulary and testing. I was ER/PR -- borderline. So what does that mean?, I asked. It means we can try you on Tamoxifen, in the hopes that you will derive some benefit from it. I was 50 yrs old and postmenopausal (after 10 yrs of perimenopause, irregular periods after being ev 28 days betw 10AM and 11AM all my life, practically hemoraghing when I got my period and having it for 10-14 days + hot flashing all day).

My dear, longtime friend Rochelle was dx 4 mnths after me. IDC. ER/PR+. After chemo she was put on Tamoxifen.

In Aug. '98 when I metastasized into liver I was found to be ER/PR- and told to flush Tamoxifen down the toilet. That it could have caused me to recur. I was also at that time, after *asking* to be tested for HER2, hoping to get in to a Herceptin trial if + as it was not yet available to the public -- I was found to be HER+ 80%, as they then put it.

Herceptin was fast-tracked by the FDA for the aggressive Her2's who were in a *lottery system* to try and get the drug and save their lives.
It became available to all Sept 28, 1998. I began taking it, in addition to Taxotere started in early Sept as I could not wait to get in to a trial w/fast growing tumors within wks after biopsy, in Nov '98 and have remained on it -- to prevent the aggressive gene from overproduces, keeping it in line and me STABLE (since '99). I believe going off Vit H would mean I'd have many recurrences to deal w, w/chemo + Herceptin to keep on fighting. Staying on the *easy* chemo, Herceptin (which is a monoclonal antibody) is the path I'm sticking w/. My oncs all concur. My insur co is not complaining. My ECHOs keep me informed re any heart problems. Dr. Pegram told me in Feb '06 out in Calif that if I was going to have heart problems they would have already shown up.

Hope this answers your questions and concerns, Astrid. If I can add anything, just ask. I am here for you, and any one who is in need of information, support and/or inspiration. Sending you loving energy...
ANDI :)

BTW, Rochelle remained on Tamoxifen for 6 yrs, not willing to give it up at 5, believing it was keeping her alive and well. Has now been off it 6 yrs and no recurrence.

Two different situations. She was lucky Tamoxifen could work for her. Though HER2 is highly aggressive, it is a form of bc that is responsible for 20% of bc. Knowing what causes my bc is a +. Because they've isolated the gene and developed a targeted med (Herceptin) to prevent the defective gene to misbehave. It's the good news and bad news all rolled in to one. But I am grateful for the Herceptin smart bomb with each new day. I personally hugged Dr. Dennis Slamon and thanked him for saving my life. Wow! Was that a thrilling day! For me and for him. He was elated meeting me, seeing the fruits of his labor.

[Nora B.]

thanks lani, that menopausal link hadn't occured to me. i'm not ER+, no antihormonal therapy, still have my ovaries, and the chemo did toss me into premature menopause (was 42 when diagnosed, still had regular periods), so maybe that's the source of the ongoing joint pains.
nora

[gin-tx]

Dear Bonnie,

I've had some side effects but nothing I cannot live with. I have driven on the highway with no problems. I had eyes examined in January by a new opthamologist, had big power change, don't know if it was the Herceptin or normal vision changes as we age.

I think my biggest complaint is constant runny nose, drives me nuts, and sleep problems. I am on Herceptin and another drug and have been for a little over a yr. I haven't had problems with fingernails, eyelashes, skin, etc. so far. I guess every person has different symptoms. Keep in touch and let me know how you are progressing.

ginkott1@aol.com

[ElaineM]

Hi,
I get tired for 24-36 hours after weekly Herceptin, but other than that I haven't noticed any other side effects.
Elaine M

[Val Pfeiffer]

My advise about vision changes due to Herceptin is to not assume that they are permanent. When I was getting Herceptin every week, as well as triple doses every three weeks, I thought I was experiencing changes to my vision. Now that I am getting Herceptin every three months I am almost sure it's changing, but it is temporary. I have found that my vision changes for about a week or two, then goes back to my normal prescription. I have had to use non-prescription sunglasses during this temporary time because I can't see out of my normal glasses :-)

[harrie]

I am so surprised on how FAST the eyebrows grow back!! Feels like only a couple of wks ago it looked like it was 75% gone and this week I notice it filling in considerably already!!

[myraazzopardi]

Hello Lani

Have had about 5 sessions of herceptin after lumpectomy chemo and rads nodes not affected. After first session had 14 hours in bed with god knows what, fever cold just could not funcion just laid in my bed till must have fallen asleep. Next session went with my book " Love Peace and self curation (In spanish which I borrowed now I cannot get a copy in any language) either the book helped odr my body knew what to expect. Must admit I feel no side effects whatsover nothing. Hope that I have not spoken too soon.
I would like to know about sunbathing in moderation and herceptin. Hosp. has said no.

Take care.
Myra.

[Nancy B.]

Ladies,

I am unclear from reading the various posts how and whether we know certain side effects are caused by Herceptin or earlier chemo drugs. In Oct 05 I was diagnosed with Stage IIIc bc (less than 1 year after a clear mammogram), ER+/PR+, Her2+. Had lumpectomy and axillary nodes removed, did 4 cycles of AC, followed by weekly T+H for 12 weeks followed by 40 weekly Herceptin infusions. Clear PET/CT in June 2006, no evidence of disease since and did four more months of herceptin (once every 3 weeks) until MUGA went from 70 to 52. Stopped herceptin 6 weeks ago.

I have felt great throughout my herceptin treatment, except for extreme stiffness in hands and feet upon waking in the morning, which goes away after walking a minute or two. I believe this actually started on the Taxol. So does anyone know whether this is the Taxol lingering on or the Herceptin, and how long will it last? It doesn't seem to be getting any better. I'm 52 and exercise a lot and eat a healthy diet.

Thanks for your thoughts and suggestions!

[Andrea Barnett Budin]

I had no stiffness in hands or feet (with Taxotere or on H so long). I do get leg cramps at night. Must stand and press toes to floor and the pain goes away. Hurts, but is easily rectifiable.

I HAVE NOT HAD EYEBROW SINCE '98! Now this of all things is ANNOYING. Like losing a breast in '95, the bald head was somehow worse in many ways. I would like my eyebrows back. ANDI :)

[Nancy B.]

Andi - did you have any symptoms/advance warning of your liver mets?

[Andrea Barnett Budin]

Nancy, After initial dx I got ev 3 mnth comprehensive bld tests. In Jan '98 my doc called and said EVERYTHING IS GOOD. Good, I echoed. Well, you just have slightly elevated liver enzymes, but it is very slight. I wouldn't worry about it. Okay. End of conversation.

3 mnths later -- same exact discussion. What could be causing that?, I asked. It could be a lot of things, your cholesterol med, a lot of things. I wouldn't worry about it. For me, it hung in the air. I do not like any of my #s not being within *normal* range, even slightly off. I question them!

July '98 -- same scenario. I took charge. Can I have a liver sonogram? You mean an abdominal sonogram. (He thinks.) I guess we could substantiate that (was he thinking about the insurance co. paying?!). I'll write you a scrip. Do you want to make the appt or should I have Renee do it. I'll call. I went for sono. Radiologist apologized but said he couldn't be sure what he was looking at. (I think he knew.) I have to send you for a CT scan. I'm sorry. Not a problem, I thought, better to be sure...

CT scan results came a few days after being taken, doc called and said, *abnormal* cells. I was waiting for MALIGNANT / BENIGN. Hanging by the phone. My husband calling every half hour. Why don't you and Paul come in this afternoon and we'll talk. I called Paul and reported. What does that mean?, he asked me. I didn't know. I was guessing *pre cancerous* cells, hoping, ever optimistic. My tumor markers were *normal*.

I was told I had multiple tumors in the liver, most likely malignant. I was already 4th stage metastatic ILC (w/2 nodes out of 18). Liver biopsy confirmed the worst. I CAUGHT IT! Months before tumor markets started to climb. I can't go by tumor markers, onc told me for future.

What you have is inoperable, incurable and you will be on longterm chemotherapy for the rest of your life. Well, inoperable was good, keeping me strong for the chemo. Incurable, okay, ca is a *chronic* condition, must be watched vigilantly, but they have many weapons in their arsenal to *control* it. You just have to find the right recipe for you. And longterm chemotherapy turned out to be longterm *monoclonal antibody* which is a cake walk compared to... So I called a miracle to me, lousy prognosis, less than 15%... Shocked I'm still here. That is *they/the docs* are shocked. I felt confident, full of faith, that I would be in that little group that survived. I believe with all my heart that attitude, and what we think all day, calls our desired destiny to us. I wish every woman on this board NED. I send my Sisters love, compassion, prayers, admiration, gratitude and awe... ANDI :)

[Nancy B.]

Andi - Many thanks for your thorough description of what happened. I also have been very pro-active with my treatment - even got my ovaries removed so I wouldn't have to worry too much about possible ovarian cancer connection. Your experience is a lesson that we all must very vigilant about anything abnormal. It sounds like Herceptin has literally saved the day for you - congratulations on your excellent (under the circumstances) prognosis!

[Andrea Barnett Budin]

Yes, Nancy, WE MUST ALL BE PRO-ACTIVE, VIGILANT AND INSISTENT -- ALL WHILE REMAINING MORE THAN SANE, BUT JOYFUL AND SERENE. A neat trick to be sure! I now save copies of every report and test I have and compare one to the last, once home and clear-headed. I micromanage my case, as the best of doc's office make mistakes, misstepping and failing to properly oversee. I am very organized. Always was, but now it's become a Survival skill!

I wish you wellness and I do all my sweet Sisters... ANDI :)

[gin-tx]

Dear Elaine,

I sent a reply to Bonnie, same thing. I think every person is different, and has various reactions. Hope this finds you doing better. I'm surprised at the people who get weekly treatment vs. every 3 weeks as they do at my onc office. I asked my nurse about every week treatment, she said all the drs in the group only give every 3 weeks.

Keep in touch and let me know how you are progressing.

ginkott1@aol.com

[Adriana Mangus]

Dear Marily:
Do you still remain NED after almost 7 years on heceptin?. I'm on my 4th year and doing ok for now. A little worry about mets to other organ, already have mets to rt lung. Just wondering I found this post of your dated 2005? Best regards.

[michka]

Lani
Had Taxol with Herceptine for 12 weeks then Herceptine every 3 weeks until it makes a year. (still ongoing).
It is difficult to know what came from Taxol (very toxic) and Herceptine.
I had a runny nose for the first 4 or 5 rounds then it stopped. the worst was the muscle and joint pain. Really difficult to support.
Today, I still have the severe pains all over. I must say it worsened when, on top, I started the hormonal therapy.
I need to drink because my mouth is dry. This started with the Herceptine/Taxol where I drank 4,5l liters a day. Now it is down to 2,5 liters a day. My toe nails fell off (this is Taxol) but today my nails are very fragile. My hair grows slowly.
What comes from what?
Michka

[tdonnelly]

I am receiving Taxol and Herceptin. My first cycle I had severe bone pain and burning with each bowel movement; I then started rectal bleeding. My second cycle; severe bone and joint pain. My vision tends to be blurry; just after receiving treatment; headaches lasting several days. Water retention. Chest pressure and shortness of breath when walking.

I am told I will need Herceptin for one year. What lasting effects will I have to endure?
When I tell my Doctor/nurse side effects they tell me they never heard of this. I do not like being dismissed in this way. The medical profession is doing a great disservice to all Breast Cancer patients with that attitude...Sharing of information is so important for all of us and future generations...

11/28/06 Infilitrating Ductal Carcinoma Stage II HER2 Positive
Lumpectomy/Portacath surgery.
4 cycles of A/C
To date: 2 cycles of Taxol/Herceptin/2 more to go; then Radiation.
06/2007 Nodules noted in left breast: Hoping chemo will shrink them. ?

I would like to hear from others regarding Herceptin.

[Heide]

Hello everyone. I had Herceptin infusions for 12 months, 3 months w/Taxol and then 9 months by itself. I started Herceptin Oct. 2005 weekly and stayed on it weekly until I finished radiation in March 2006. Then my Onc changed me to every 3 weeks Herceptin until I finished it in Oct. 2006. I don't recall any side effects of the Herceptin except the runny nose; and that I didn't even realize could have been related to the Herceptin until I read some of the other posts on here. I found Herceptin extremely tolerable to my system.

I enjoy reading all your posts. Thank You.

[Nancy B.]

Dear tdonnelly,

I suspect your bone pain is coming from the Neupogen you're likely getting while on Taxol to stimulate your white blood cells, which are destroyed by the Taxol. These cells are made within your bone marrow, and the pain comes from the stimulation of these cells. You shouldn't have this when on your Herceptin alone. I'd also like to suggest that your rectal bleeding may result from the severe constipation that Taxol can cause. Try taking stool softeners every day and drinks lots of water. I had your side effects while on Taxol and Herceptin, but on herceptin alone I've only had stiffness in my hands and feet after waking in the morning. Good luck and hang in there!

[tdonnelly]

Hi Nancy,
Thank you for your kind words and support. There are days when I wish this were all behind me. I only have two more cycles of Taxol and Herceptin. Then Herceptin only and still need to have Radiation. What tumor markers are used to see if the cancer is still growing? How do we know if Herceptin is working? At a recent mammogram, nodules were noticed in my left breast; the uncertainty of this disease can be overwhelming at times. What bothers me the most is I had only known one woman in the 70's with breast cancer. Now its become a national epidemic...No one seems to know for sure how this has started. I often think of what all of us have in common-to bring on this disease???

[Nancy B.]

T,
I believe the most accurate test to determine whether treatment is working is a PET/CT scan. I had one at the time of initial diagnosis and then another at the end of chemo and before radiation. Thankfully, for me the chemo destroyed the 2 small infra-clavicular tumors I still had following surgery (I was Stage IIIC), and I am NED since then (June 2006). The tumor markers are called CA 27/29, although these are not completely reliable. Herceptin is a great drug - see Andi's (Andrea) amazing story in earlier posts. Yes, the uncertainty we all face can be overwhelming, but you just need to put one foot in front of the other, one step at a time, and move through your treatments - there is light at the end of the tunnel! Do lots of research so you can understand your options. I will be happy to try to help if I can - I work in the pharmaceutical industry and sometimes I actually hear of new things before my doctor.

[sdhaem]

I suffered from L and R ventricle damage, and my onoc took me off herceptin, with no promise to ever go back on it.. I am very anxious about not receiving the full 52 weeks I only did 18 weekly treatment.. The Cardiologist put me on heart med and I get a Muga scan next month.

[futurefocus]

Hi all...finished my herceptin May 30, 07 had VAP removed June 5,07. AS reported earlier I was one who had very bad side effects. I considered stopping treatment at 6 months ...but finsihed the entire 12 months. i am still suffering I take neurotin and darvaset four times a day. I couldn't get through the day without these pain/nerve meds. I sure hope that the effects will subside...I can't imagine living this way...or could I? Sure beats not living I suppose. Is there anyone out there who had serious side effects and after some period of time they went away? Could use a little hope....every ache and pain makes me fear the worse....
Thanks for the feedback...

[tdonnelly]

I have received 2 cycles of Taxol/Herceptin. For several weeks I have been experiencing all over chills/goosebumps and then a wave of tingling and numbness all over. It lasts several minutes. It's almost like tiny electrical shocks ? Mostly when I lay down. One night it was so strong it woke me from a sound sleep. These episodes continue 5-6 times while I'm trying to go to sleep. Sometimes when sitting up this same thing happens to my legs-numb/tingling sensation. Is this a form of neuropathy? Possible nerve damage? Any info. would be appreciated.
Tamara

Lumpectomy 11/06 Stage 2 HER2+
Invasive Ductal Carcinoma
Nodes/Margins Clear
Port Surgery 3/07
4 cycles A/C-fin 06/06
2 cycles of Taxol/Herceptin
Radiation to follow