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

[norwegian]

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

[kat in the delta]

NORA, Gerri,
Hi ! I've been finished with mine for I think... a yr+( my memory is terrible).
Yes, I am still having some of the side effects,
and a FEW are getting worse!!!

I just read an article in an MD's Journal that gave this opinion(not word for word)..
..as Now more of US are Surviving theChemotherapy & Cancer .Experience..

the researchers are Beginning to see that Dammage from Chemo's,etc.

..may not...even... show up UNTIL...8 to 10+ years AFTER stopping all
chemos,rads,..etc...
No one knew this before NOW...!!..

and......I personally hate to say it ..but most people close to you do NOT understand, nor will Never Understand what this has done to you
...... (( I do feel isolated at times..Thank you for this SITE !!))....
Others may think or Dare to Say:
" NOT HOOKED UP TO AN IV?" Then, "YOU CANNOT HAVE PAIN"!!

Well, I think it is only "AFTER" a PERSON has HAD... ALL ..

chemos, rads, surgery or whatever....
Not until all THIS IS OVER .and the DAMMAGE.. DONE.. IS ..This...
the true..
TIME A SURVIVOR IS STRUGGLING for THEIR DEAR LIFE !!!

This is WHEN almost EVERY CELL IN A PERSON"S BODY HAS BEEN

WRECKED !!! --the DNA or some part of EVERY CELL---SHATTERED !!!!

I think it will take ME YEARS--to build myself back..... if possible I'm trying... to control what I eat.,EXercise.,etc.,
Now STRESS..... is a little hard for me to control..


WHAT DO U THINK .... ???

Yes I have pain.. especially in my lower LEGS!! I think it is Not Only from the Herceptin , but as a result of receiving a combination of Chemo's.,rads.AND Herceptin.... My feet get Swollen...as well as my hands at times... I CANNOT wear any tight fitting socks or other clothing.., my fingers and toes..and feet get numb ..and I feel like I am walking on knubs, my mind seems to wander... and even gropes around trying to find a particular word.... I have a hard time going to sleep .... and really, I just do not look or feel well or LIKE I USE TO Before the Cancer Experience.

I am LIKE I AM>>>>> GOOD and BAD<<< and will NEVER BE THE SAME PERSON AGAIN !!!!!!
NO,, I canNOT do things that were once easily done. I am slower doing and thinking... and I DO NEED MY FAMILY TO PITCH IN AND HELP.

Kat in the Delta

[debski]

Kat in the Delta

Yes - I understand completely. Sorry to barge in on the chat- but had to say that I feel the same. My oncologist is the most lovely woman you could imagine- so kind and seems to understand. She told me that I may well never get back to normal. That's just how it is so I am going to try to get on with it BUT at the same time I am doing my best to eat well-exercise and be much more selfish.

I totally agree that other people cannot understand. In fact I am amazed at the lack of empathy. If I am being generous I would say that it is partly because they care so much they don't want to believe you feel the way you do- but actually I think we are just all programmed to be selfish.

So I am going to be the same.
Really hope you get through this rough patch soon. I am amazed at the progress I have made recently- but I am not eorking at the moment and that helps- I just sort of collapsed mentally and threw the towel in with work-temporarily.

It is unbelievable what has happened to us all- but I am wondering if denial would be a better place to live!

Love Debbie

[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.

[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.

[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!

[tdonnelly]

After my 13th treatment of Herceptin (every 3 weeks) I became very nauseated; this has lasted now for 4 weeks. I feel the constant urge to vomit. I have had no appetite; I force myself to eat 3 meals a day. My recent blood test shows complications with my liver. I decided to forgo my remaining 6 treatments. I fear my body is rejecting the Herceptin; all previous were tolerated. My thyroid disease with liver complications is a real concern. I am just praying my body finds its own way back to normal. No tests, no treatments etc. just lots of rest.
Tamara Donnelly
Invasive Ductal Carcinoma 10/2006 HER2+

[ElaineM]

Hi T Donnelly and anyone else who is reading this.
I am so sorry you have been feeling so under the weather from your Herceptin treatment. Oncologists and/or chemo nurses might be able to suggest medicine for that. There might be a dietician, nutritionist or natropathic physician in your area who can help you plan a menu that will not make you sick if you decide to try some more Herceptin in the future. Maybe your doc can refer you to somebody for that kind of help. There is a list of Herceptin side effects at http://www.herceptin.com. There might be some information about your side effects there. Everyone's body is different, so not everyone will experience the same side effects from medicines. Hang in there.

[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

[fisherac]

Baily, you sound so positive and driven. I hope I can be like you during my herceptin treatment! thanks.

Thanks everyone for the posts!!

I haven't read the whole thread, so please forgive me for barging in. One of my friends recommended this site.

I'm having a TON of these side effects, including a wicked rash that lasts for 5 days, post-treatment. Anyone else have this?
Also: runny, dry, cracked, bleeding nose (by turns)
fingernail flaking
nausea
vomiting
weight gain/loss (also by turns)
headaches
dizziness (could also be the plethora of pre-meds I'm on)
chest pain
tingling in L arm and fingertips

Due for MUGA on Monday morning, but thought I'd post here anyway, just to say THANK YOU for all the wonderful information! It's so nice to know I'm not just a weirdo with these.

I guess I should sign in and make an ID for myself, since I am HER2+++.

Thanks, Janelle (if you're reading) for letting me know about this board!

Becca
DX: 11/30/06 DCIS
2nd DX: 2/28/08 IDC w/DCIS

4 rounds TC - done
52 weeks Herceptin
ER+, PR+, HER2+++

[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.

[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.

[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

[Janelle]

Becca,
I just saw this now! You're welcome. You should start a new thread so you get more traffic.

Janelle

DX 12/16/04
Radical mastectomy
2 nodes positive
E-,P-, Her 2 neu +++
Invasive Ductal carcinoma

4 bouts of A/C, 12 weeks of Taxol, Herceptin weekly for one year.

The only problem I had with Herceptin was major top teeth pain starting about the 10th month of herceptin and continuing one month after stopping. I suppose it was sinus but no other sinus problems. I did have problems with my right eye blurring but that started with the A/C. I was able to keep my excercize program during treatment. I finished Herceptin the second week of May 06, backpacked down and out of the Grand Canyon the first week of June 06 and had my port taken out June 17 06. I think the excercize really did it for me, keeping depression at bay.