Stopping Herceptin
 

Jan 2001. Bilateral mastectomy (BC in both breasts); 11/18 Ax Lymph RHS + 8 Ax Lymph LHS; portacath in situ. Chemo + Rad then Arimidex on completion. In remission until:
Aug 2003. Mets to bone in spine and pelvic, HER2+. Taxotere, Zometa, Herceptin treatment. Now stabilized.
I've been on Herceptin over 3 years now and because my scans and tumour markers have been stabilized for 2years, I'm being asked if I had considered coming off it - possibly to 'wait and see'! Presently my family is saying no but after further scans that still say that all is stable, I am now considering my oncologist's suggestion.
Is there anyone else in a similar situation? As yet in Australia, I don't know of anyone or anywhere else for that matter!
We visited UK in 2004 and I took my Herceptin with me. I was asked how long did I think I needed to continue with Herceptin, perhaps they thought I might know something they didn't!
I know if I did agree, I would like to be monitored very closely, but I would value others' opinions.
Barb

Dear Barb do you think you should post your question in the her2 group forum for a reply? Personally I would not come off if I was coping with the treatment! Greetings from Melbourne! Romo

Hi,

I was forced to stop Herceptin because of lowered MUGA score. Several of the members on the board continue with Herceptin for 'maintenance'. I would think if your heart function is fine, you shouldn't take any chances. Continue the treatment is what I would do. I am going to repost your question and maybe more people will answer your question.

I too would stay on it! I know of far too many women that were stage IV and after they went off Tamoxifin, the cancer started growing again. I dont know if that would happen with herceptin or not, but why take the chance if you are feeling good.

Highly recommend STAYING ON HERCEPTIN
 

Hi,

I would guess that the regular herceptin is what is keeping you stable. I have been on herceptin since 1999 and uh...I am STILL kickin'. I have had no chemo since 1998--only herceptin and daily regimen, still all these years later and I work and raise my son, so I would NOT even contemplate going off of it--especially in your position...

My 2 cents,
Gina
Gpopp@comcast.net

Gina!
 

Gina!!

I'm so glad to see you! It's been a long time.

Question: Have you stayed on the 3 week dose throughout, or do you change dosage according to markers?

And...what is your "daily regime"?

You are an inspiration...

Terri

I was off it for several years with pretty quiet mets. Then I got more, went back on it, and was dx with brain mets WHILE ON IT. So I don't think it's all it's cracked up to be but MD has me on it now still.