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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 05-09-2006 08:07 AM

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


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!


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?

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.


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

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.


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+






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

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.


Julie2 05-09-2006 08:10 PM

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


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.


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.

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