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

[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

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?

[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