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

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

Her2nSue · 10-02-2006, 12:58 PM

forgot to give my side affects from herceptin, which I have been on alone since end of April. Between herceptin and femara I experience memory loss, I lose things constantly and can't seem to relocate them, my hearing is not as sharp as before. Constant small joint aches, at times my fingers belong to someone else. Can't seem to do buttons, I get pretty fumbly. Fingers are extremely swollen in the mornings. Seems that the opposite hand (the right one) of the mastectomy is the one that seems more sensitive with the pain. Joint knuckles so bad I can't wear any of my rings on the right ring finger. I don't seem to have any swelling in my feet, ankles or toes which to me seems strange when your fingers feel so bloated. My weight also has gone up some. My thigh muscles hurt tremendously when going up or down stairs and found out last evening, also with dancing. As for body fatigue, has it been known to be any other way BUT tired, like you hadn't slept for days. I guess, it's still better than the alternative, still it can get you down having body, mind, hearing of an 110 year old. Just try to keep the humor up it does help.

Sue

kat in the delta · 07-05-2007, 01:16 PM

I have been off herceptin for nearly a year after doing 12 weekly treatments(6 with taxol and 6 without weekly), then a larger dose of Herceptin every 3 wks for a year....MY MEMORY IS NOT BETTER !!! It only gets worse...and worse...... go to healthtalk.com and listen to an talk a few months ago... with some radiologist..and MDs.
What is your MUGA score.... My onc would not give me my last 2 heart scans----- which were called"rested-gaited"(MUGA?) Heart scans....
The last score on mine was a 48....--
I saw that 55+ was normal
--DOES ANYONE KNOW ??
PLEASE E-MAIL ME, OR RSVP ON THIS SITE...

kat in the delta

bcsurvivor · 12-19-2011, 08:02 PM

I was also on Taxol 1x per week for 12 weeks and Herceptin. After the chemo ended, the Herceptin continued to finish the year. I made it through! I also had memory/word retrieval issues, week nails, fatique, hot flashes. The chemo put my right in menapause.
I'm not sure what was the Taxol and what was the Herceptin.
I ended the Herceptin in April 2011, and since then, I am back at work and doing well. I still have good and bad days but mentally and physically, I'm doing better. I do Sudoku puzzles to improve my mental clarity. If I need a question repeated, I just ask. It is what it is and I'm alive :-)

I'm glad I may the decisions that I did. I had early stage Her2neu +++ stage 1a, High grade with no lymph node involvement. I had a bilateral mastectomy and reconstruction because of my past history of breast tumors, scar tissue, and dense breast tissue. I don't regret taking an aggressive stand. It turned out to be the best choice for me.

bcsurvivor