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

[Jackie07]

I guess the heart problem is the biggest side effect.

[jaybt]

I am Stage 3 Early breast cancer (locally advanced), ER positive, and postmenopausal. I commenced Herceptin with Taxol and will continue to take Herceptin every three weeks for approx 1 year until July this year. I also started taking Arimidex in December 07.

My two cents is that I believe there is a problem with identifying any particular side effect when a number of drugs are being taken concurrently. Its also well established that chemo does damage to our systems.

My adjunctive therapy was dense dose AC and Taxol/in conjunction with 3 weekly Herceptin. However on the second Taxol treatment/first Herceptin my body became toxic and I moved to weekly Taxol and continued with 3 week Herceptin.

The main symptom of being toxic was breathlessness. No previous asthma history and had given up smoking six months earlier. I was allowed back on Herceptin when it was confirmed after tests that no problem existed with my lungs. On the week that I now have Herceptin there is a tightness in my chest and I feel like I am not getting enough air. My heart races a little at times.

On the week I have Herceptin I have a crusty nose and feel fatigued. I feel "a bit quiet" but nothing bothersome. My heart function results are good over the three eco-cardiograms (MUGA's?) that I have had since taking Herceptin.

My body continues to ache quite badly after chemo (finished back in October 07), particularly the legs, ankles - and I numbness in my hands. I also continue to bloat, sweat and sleep badly some nights. However, I believe this is not caused by Herceptin but not helped with Arimidex as they worsened when I started taking this Arimidex. I will put mood swings, nail cracking and swelling of hands and feet to Arimidex, with fuzzy memory and loss of words to chemo.

My tumour markers have dropped considerably and I attribute this to good treatment which includes taking Herceptin. Obviously something has worked for me. I don't wish to contemplate the alternative if Herceptin was not available (and/or freely provided in this country). Like many of us I am just waiting for the next miracle drug to fix the rest up.

[BethC]

I have been taking Herceptin every 3 weeks since October 1, 2007. For the first 18 weeks, I also had Taxotere and Carboplatin. Approximately 14 days after the infusion, I start breaking out with acne and a rash on my face, chest and upper back. I continue with the breakouts for about a week.

[mabrooks]

I only have three more Herceptin IV's. I have been lucky enough to not have to have any chemo. My only issues with the Herceptin - is that I have no more eyelashes, my nails and finger tips are a mess - and splitting and cracking and painful - and my nasal pasages are a mess. I will be glad to be done with this drug and I just hope that down the raod they don't inform us that it has harmed us in anyway. I finally weaned off Effexor - that was a nightmare. It helped with hot flashes - but the withdrawal was awful. If you are considering it please google "effexor withdrawal' before you start. MD's are not aware of how terrible it can be to stop it.
Good luck to you all - this is a great site!

[norwegian]

- and my swollen body - with fingers like sausages.. and ankels like thighs...

[Madge]

Very Minor Side Effects--mostly just annoying

Began Herceptin + Taxol (12 weekly infusions)prior to lumpectomy
Stopped Herceptin for 6 weeks while receiving FEC
Resumed Herceptin every 3 weeks -will complete 52 weeks 3/26/08

Acne-- Face, neck and back -began with very first infusion. My Dr. prescribed doxycycline- seems to take care of it (can tell if I miss a day).

Declining vision--although could be age, I'm 43 but never needed glasses prior to treatment

Will take my last treatment on 3/26/08 and feel great---did gain some weight (15-20 lb.) but can't blamed it on Herceptin--my work-outs have slowed down and my eating has not been the most healthy--

looking forward to putting this behind me and dropping those 20 lbs.

[CoachPlayWin]

Anne, Mary Ann, etc...
I, too, am an exercise nut. I have done cardio, weights, and played tennis 3 times a week throughout chemo and now Herceptin. I have to say the biggest issue I see is the lack of flexibility in my joints, particularly knees. Also, my muscles seem tight and susceptible to strains. Anyone else? I have not gained any weight on Herceptin; during chemo I picked up a few pounds, but they fell off pretty quickly. If you are worried about keeping up, I think you should be able to do anything you were doing previously.

I do have a "weird" feeling in my throat; almost like a sore throat, but not really. It never really gets worse, just a constant annoyance. Does anyone else have this?

also, the few days right after Herceptin are kind of like a very mild flu...achey and tired. It passes quickly, though.

[tdonnelly]

HER2 Friends,
I received my final Herceptin on Monday, June 23. My body refuses to let me sleep. In the past 3 days I have only had 5 hours sleep. I am short of breath again. I also have hypothyroid disease; maybe the two battle each other out:Herceptin & Levothyroxine ?

I cant take sleeping pills etc. This happened to me before in Oct 2006 after my punch press biopsy- 16 days no real sleep ended up in the ER nearly had a stroke. The medical team kind of swept it under the rug and no medical professional ever explained what happened to me; pointed the finger at Mental Illness; no guys it was real not perceived. All things have a way of coming out. The sleep deprivation from bc/treatment has been the most difficult side effect for me.
Tamara
Invasive Ductal Carcinoma 10/2006

[miss di]

Dear Debski and all,

I totally agree with your onc. It took me almost three years after first go round with the beast to feel better. (chemo and rads after quadrantectomy) People do not understand, they think you are all done with treatment, you should be done! Well it just doesn't work that way. I say, you can not put that much poison in anyone's body and expect them to be the same. I also have scarring on my lung from the radiation. I always believed my breathing "restriciton" was from the rads, but they kept telling me no. On my first scans this time, different hospital, it was the first things on my report, "scarring on left lung related to radiation."
As far as Herceptin, as I stated previously, I took a short break because of side effects, swithched from every 3 weeks to weekly. I did feel much better with the skipped dose, so I don't think it takes long after you stop (in my case) to feel better. I've had 2 weekly infusions now, and side effects creeping back up, but not as bad right now. OWWW, those stupid foot cramps!
My best to all,
Di

[Kathy S in Tokyo]

The foot cramps are from Herceptin? I was blaming them on the Taxol...
Lately I've had light nasal bleeding, probably from the irritation of a constantly running nose. I just hit the one year mark on the Herceptin treatments early this month and have had Taxol after the Herceptin for 3 out of 4 weeks since last June.

My weight has increased about 30 lbs in the past year although I'm not eating particularly more.

[ElaineM]

Hi,
There was an article in either the current or the previous issue of Cure Maganzine (http://www.curetoday.com) regarding cancer drugs and rashes. Several drugs were tested in a clinical setting and the result was that when people had rashes that is when the drugs were the most effective. Herceptin was not on the list of drugs tested, but rashes and sinus problems are listed among the possible side effects on the Herceptin website.
Also if we are taking other drugs that can also produce rashes the rash might be more of a problem if we are also taking Herceptin.
Family members or friends who appear to be clueless might be going through their own emotional issues, because someone they know or love has cancer and they do not know how to respond or know what to do..
It is difficult to have such people in our lives. I have had people think I should keep up with them 24/7 and people who think I am some kind of invalid. I just chalk it all up to it being their problems and continue to do things my way at my own pace. It is not easy to live with or be friends with some of these people sometimes. Oh well. Life is a learning experience.

[ElaineM]

Hi,
The family members whose needs, wishes and feelings we should consider are children. Otherwise as long as we are doing our best to take care of ourselves and are working well with our docs that is the main thing.
The best to everyone. Hang in there, side effects and all!

[fisherac]

Wow, all the side effects mentioned seem troubling. Before diagnosis, & for 25 years, I have been a workout maniac and exercised regularly both weight training and cardio. Is there anyone out there like that who can report experiences with regard to its effect on workouts? the weight gain effects trouble me, and if this drug makes one too fatigued to work out, like chemo has for me, i would be curious to know that.

Thanks everyone for repsonses! Anne

[harrie]

Anne, this is in response to your question about workouts. I am exactly like you....but I am called a "fitness fanatic" according to the inscription on my ipod. Anyways...I had absolutely no significant side effects from herceptin that inhibited my workouts. I, like you, do both wt training and cardio. I also had no significant wt gain from herceptin. Maybe this was partly do to the fact that I was fairly active during herceptin.

I did have to alter my workouts during chemo, but I won't get into that since your question was in regards to heceptin.

Prior to starting herceptin I was also a little concerned like you are because I read so many who had some serious side effects. So what I did was open a thread asking for those who had tolerated heceptin very well and had little if any side effects and I received a good number of responses and I felt better. Fortunately for me, I ended up being one of those who had minimal if any side effects. Hope you will be like that too.
PM me if you have any specific questions for me.
Good luck...
Maryanne

[harrie]

Coachplaywin....
Did you ever consider yoga as a complementary workout?
(for your flexibility)
Maryanne

[JustwannaBE]

Hmmm... I have never posted to this website, but have been reading it since I was diagnosed in May, 2007. I am ER/PR neg, HER2 +. In May, 2007, I had a left breast lumpectomy. Sentinel node biopsy neg. Mammosite done in June 2xday for 5 days.
All is great..Stage 1. Not so fast, pet scan in late June showed mammary gland and supraclavical lymph nodes with cancer. July had port installed. August had mammary gland and supraclivical lymph nodes removed. Started A/C in September 1x3wks for 4 doses. November I started Taxol and Herceptin. With exception to the bone pain of taxol that lasted a week each time (1x3wks for 4 doses), I was in heaven because I almost felt human again on this new treatment. In January 2008 I started Herceptin alone and noticed my hands would swell and my eyelids were constantly swollen, also I seemed to sneeze alot the night of my treatment. Had onc quit giving me the steroids with herceptin and those problems disappeared, but now I find that I have what I refer to as myalga, as I ache all over for a couple of weeks after treatment. I only seem to notice it at night, as I must be too busy during the day working and stuff to notice.. Told my onc and told him I wanted more vicodin, so when I feel achy, I pop a vicodin and it goes away. I also think I have mouse hair growing on me..he he (you know that herceptin is made from the protein of the spleen of mice, don't ya?). Compared to what I am reading, I feel really lucky. Before I started the A/C my lvef level was 75%, after A/C it dropped to 64% and has remained there, as I get it tested every three months. I am kinda worried tho, because in April they found a lesion on my liver and I had a liver resection done to remove it - chevron style - talk about pain.. So, my question to the onc was, if the lesion on the liver didn't show in my June, 07 scan, then how did it grow to at least 1/2 inch between June of 2007 and April of 2008, when I had all that chemo and herceptin...dah... so now I am going to not only be on herceptin, but now tykerb and avastin. I just hope I don't have any problems with that, but after reading some of ya'll on tykerb, I am afraid of getting 'the rash'. My onc says that tykerb will probably cause high blood pressure, which I have low blood pressure now, so I am not thrilled about that. I start tykerb Friday (June 27th), the day after my colonoscopy, so I will know what affects tykerb has without having it at the same time as herceptin. Avastin won't be started for another 4 weeks.

So, I guess I rambled, but in a nutshell, on
Herceptin w/steroid I had hand and eyelid swelling, sneezing only the night of treatment.
Herceptin alone - achyness - myalga (which if you read the side effects of herceptin, that is listed), for which I pop a vicodin - only at night.

[Mary Jeanne Phillips]

Hi Lani, Great survey. Diagnosed in June 2001,Her 2 positive pro.positive, no lymph node involvement but eschemic evidence.Had radiation regime and then 5FU and Cytoxin I think. Mets to liver, lungs, and bones in 2004, then brain mets in 2006, had craiotomy, mets to brain in 07 and 08, had gamma on them (5 tumors in all.) Started Herceptin after craniotomy in 06. Have taken zometa since 04 I think. Took Femara then for only 6 months. that is all the chemo I have done. I started Macrobiotics in 05. Tumors have remained fairly stable except for brain mets.
I didn't think I had any side effects from Herceptin because I got up evry day and didi my life activities. But now that these things are mentioned I realize I have had terrible sinus, splitting nails, (or thin to no nails) hair condtion. RBC holding but not good.My energy levels have been good most of the time. I am a very high energy person, so that is why I have not taken any systemic chemos up until this point. since Herceptin is a targeted treatment, I felt "safe". I do have terible hot flashes but am post menapausal and have had terrible hot floashes for years. That is why I took HRT for 12 years.
I am in the delimma of what to do now with the offer of Tykerb without Xeloda since there is progression in all the tumors and the mets to the brain.
I hope this helps but basically I am thankful for Herceptin and the low side effects for me. I guess I just take the way I feel for granted and have not blamed it on Zometa or Herceptin.
Would love to hear from anyone about Tykerb. Mary Jeanne

[Mary Jeanne Phillips]

I don not know how to start a thread. Is there anyone who could help me?? I reply to others but wanted to post one. I wrote it out in the thread section, but didn't know how to send it. THANKS Mary Jeanne

Hello everyone. I was diagnosed in Aug/07, Stage 2B, ER-, PR-, HER2neu+ Grade 3. Did chemo (Epirubicin, Cyclophosphamide, Taxol) which ended last Feb 1/08, finished 32 rounds of radiation, and now just doing solely Herceptin every 3 weeks. I am so looking forward to the last infusion on Dec 12/08.

Thanks for all your posts about the side effects of Herceptin. It is from the experiences of others that I can validate my own side effects. Since it's been 4 months since my last radiation and 5 months since chemo, I still got to feel some other side effects for which I have Herceptin to "blame". I think the worst side effect I got is a terrible headache from the infusion (once a terrible vertigo), thin nails that get easily cracked, some memory issues (although chemo should be partly to blame this time). My own MUGA tests are okay so far.

Over all, I'll have the s/e anytime as long as this drug will keep the cancer out of all of us. Wishing everyone the best!

[rosemary]

I was taken off Herceptin in April because of congestive heart failure. I had a dose dense schedule of adriamycin and cytoxan and then taxol and herceptin. While I was taking Taxol every 2 weeks I had Herceptin every week. When I finished with the Taxol I went to Herceptin every 3 weeks.
After 11 months of my year of Herceptin I ended up in the hospital with congestive heart failure. My oncologist said it should not have happened so late in the herceptin treatment or gone down so much so fast. But how would he know I am only his third case of congestive heart failure after Herceptin. The respiratory infection that I had had for 3 weeks may have contributed.
On March my Muga scan showed a left ventricle ejection fraction of 49. On April 29 it was between 15-20 by echocardiogram.
My heart is getting better. My echocardiogram was at 25-30 a couple of weeks ago and I continue to feel like I am improving.
That was the big problem I had with Herceptin. After I had been off of it for a while my fingernails and hair were much better. I can actually grow fingernails again and my hair is getting thicker.
I have less energy but who knows whether that is from my heart, the chemo or herceptin.