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

[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...

[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

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

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?

[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

[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)