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

Lani · 05-09-2006, 08:07 AM

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

THANKS AGAIN,
LANI

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

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!

Lani

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

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.

Her2nSue · 05-09-2006, 01:31 PM

Kimber

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.

Sue

Carol E · 09-21-2006, 09:02 AM

Hi,
I am new to this forum, but I just wanted to say that I was on Herceptin for 5 months, first four months every week, last month every 3 weeks, dbl dose, had runny nose, legs ache, and some rib pain (actually a lot) but it really wasn't to bad,
but unfortunately it didn't help me much, now I will be going on Taxol and Avestin, could someone please tell me your experience with these chemo's, thank you very much,
Carol E

MAB1943 · 09-20-2007, 10:35 AM

I am on 3 week infusions of herceptin, I have the following side effects
Ears clogged, memory, bones ache, tired, insomnia or restless sleeping,and very slight nausea.

Paris · 09-27-2007, 05:50 PM

Hi Andi, Thanks for your kind reply. You are inspiring! If it is the herceptin that's making me tired then okay I'll deal with it. I definitely appreciate life alot more these days even with the fatigue! I grew up on Long Island. Where did you live?

MAB I didn't have any neuropathy. The fatigue has always been my problem. Otherwise chemo wasn't too bad.

Jamie

BonnieR · 09-27-2007, 05:54 PM

MAB, I have neuropathy from something I'm taking (THC). It is intermittent. Worse right after the infusion. I take 10 Gm three times a day of Glutamine. You mix the powder with juice or what have you.....
Seems to help.

Paris · 10-10-2007, 07:10 AM

Hi DHealey-I'm curious why your onc. said you'd never be cured since you were HER2+. While I know in reality breast cancer can't be completely cured why was the HER2 such a negative? On the one hand HER2 has more aggressive characteristics but you hear people referring to herceptin as the "magic bullet". I am er/pr- and I've actually had people tell me that I should feel happy I don't have to do hormone therapy or worry about my ovaries.

Jamie

Brenda_D · 10-10-2007, 08:27 AM

And my Onc said "we are going for the cure", even though I have been staged at IV and the original pet scan showed bone mets. Later bone scan says NED, so that leaves me confused as to whether they were really there or not.

But, I think it depends on how your Onc views treatment and how your mental outlook can affect your overall health.
My Onc said 10 yrs ago, I wouldn't have had much of a chance, but now we have Herceptin and later Tykerb.

Andrea Barnett Budin · 09-28-2007, 02:08 PM

Jamie, Any questions you have shoot them over to me, as the poster child for Vit H, I have accumulated a lot of knowledge, hanging out in chemo rooms for the last 12 yrs.

I grew up in Rockville Centre. Got married, lived in Manhattan (22nd & 2nd), then an apartment in Lynbook, till we could afford (or stretch to afford a house). Had to go way out to Dix Hills to achieve that. Lived there 29 yrs raising my babes and my Silky Terriers. Now have 2 Maltese bros that we rescued 4 yrs ago.

Moved to Manhasset as I was initially dx in '95. That was interesting. Then moved full time to our part time town Boca. Moved from NY and from southern Boca large apartment to northern Boca house -- so I could take all my *stuff*. That move was just after finishing 9 mnths of Taxotere. That was impossible. It's amazing what you can do when you have to. And here I be. Or, as Flori, morning glory, says -- HERE AM I!

With loving energy going out to my Sisters and Bros... Andi

futurefocus · 10-14-2007, 09:01 PM

Andi,
You are an inspiration to me....I imagine you have gained a great deal of knowledge over the last 12 yrs. I noticed you are "borerline ER & PR"...Did they put you into menopause? My cycles returned after chemo and it scares me. In days past they couldn't determine the specificities of the disease and the chemo or the onc automatically put BC woman into menoopause...Why don't they do this today? ANy help is appreciated.