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

[Her2nSue]

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]

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

[panicked911]

God, sue you sound like me. I am on arimidex instead of femera and also lupron which doesn;y help. I am curious about one thing ladies... does it make a difference in terms of severity of side effects whe you are on the once weekly or the triple dose of herceptain AND whe did the side effects start- how lig ito treatment.
I was on weekly from end of November 05 thru April - was handling it alright even thru rads util I took levaquin for a sinus infection - stopped that and went onto to triple dose and that is when the knees, thighs, fingers, elbows, shoulders really started aching swelling in fingers is relatively recent- memory loss- can't recall ( no joke).. 2 doses left --hopig some at least will go back.
any thoughts?

Susanne

[kat in the delta]

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]

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