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-   -   Please post your two cents on Herceptin "side effects" real or perceived! (http://her2support.org/vbulletin/showthread.php?t=23696)

Lani 05-09-2006 08:04 AM

Please post your two cents on Herceptin "side effects" real or perceived!
 
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 05-09-2006 08:07 AM

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

THANKS AGAIN,
LANI

anne 05-09-2006 08:48 AM

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 05-09-2006 09:22 AM

Thanks so much for sharing that information!
 
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 05-09-2006 10:41 AM

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 05-09-2006 11:09 AM

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

kimber 05-09-2006 11:22 AM

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 05-09-2006 01:27 PM

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 05-09-2006 01:31 PM

regaining memory possibilities?
 
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 05-09-2006 01:55 PM

My symptoms with Herceptin
 
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 05-09-2006 03:09 PM

Herceptin
 
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 05-09-2006 04:39 PM

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 05-09-2006 04:44 PM

To Lani
 
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 05-09-2006 04:55 PM

herceptain use
 
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 05-09-2006 05:26 PM

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

Berta 05-09-2006 06:53 PM

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 05-09-2006 07:34 PM

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 05-09-2006 08:08 PM

side effects
 
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 05-09-2006 08:10 PM

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

julie

Yorkiegirl 05-09-2006 09:00 PM

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 05-10-2006 01:47 AM

So glad we are doing this.. I too called Genentec
 
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 05-10-2006 04:30 AM

Side Effects
 
Herceptin every 3 weeks....

runny nose
insomnia
weight gain

Olivia

Kaye 05-10-2006 05:11 AM

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 05-10-2006 08:57 AM

Kaye
 
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 05-10-2006 11:23 AM

Yorkiegirl - continue to mention your side effects!
 
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 05-10-2006 11:37 AM

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 05-10-2006 11:57 AM

My Side Effects
 
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 05-10-2006 03:21 PM

Herceptin side effects
 
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/Hum.../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 05-10-2006 10:46 PM

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 05-11-2006 12:40 AM

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 05-11-2006 02:50 AM

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 05-11-2006 01:50 PM

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 05-11-2006 03:45 PM

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 05-11-2006 07:15 PM

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 05-11-2006 09:41 PM

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 05-12-2006 09:29 PM

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 05-13-2006 05:11 AM

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 05-14-2006 06:36 PM

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 05-14-2006 09:11 PM

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 05-17-2006 07:41 AM

Coming into this late...
 
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


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