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

[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

[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

[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

[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.

[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!

[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.

[gin-tx]

Dear Adriana,

Received your request for info. I have some side effects but not some of the ones others describe. I have constant runny nose, some muscle aches, not a lot of energy at times (I still work part time) and some days feel general lousy after a treatment. That's why I do them on Fri so I can have week-end to regain my strength and the heat here is not helping. Have to get out early in day to run errands or can't stand to be outside. Hope this finds you doing well, keep me informed of your progress.

ginkott1@aol.com

[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

[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