Stopping Herceptin

[Jackie07]

This is a repost for Barb of Australia. She had posted in Profile of Courage but did not get many response.

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
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[Lani]

people who live in countries with national health insurance ( it seems government beancounters don't value human life over costs of some medications)

I have asked at conferences including the San Antonio BC conference and the consensus seems to be that the international standard of care is to continue herceptin as long as a patient remains NED and only ADD THINGS TO the herceptin if recurrences occur, unless they are brain mets in which case continuance of herceptin has been shown in several papers to STILL be of help (one theory is that the radiation makes the bloodbrain barrier more permeable) with the possibility of adding (still in trial stage) or switching to (approved in US w capecitabine) tykerb.

There are NO TRUE ANSWERS YET as they are still finding out, but there are many on this board who have been on herceptin for 8,9,10 years. One with a truly remarkable story is Gina, but there are many. Herceptin has not been known to cause more heart problems late than early and I have never seen any proof that staying on herceptin harms Stage IV patients who are NED ie, no evidence it should be "saved for later"

Dr. Slamon feels that her2 tumors are "addicted" to signalling instigated by her2--why would you stop giving an addict their methadone? Similarly would you stop giving a type 1 (childhood) diabetic their insulin if one can't cure the diabetes, but can maintain life with it?

The dogma is that there is no cure for those who are Stage IV(we all definitely hope to change that--but for now it means that with luck we hope to make stage IV a chronic disease that depends on continuing treatment, like diabetes)

I guess it would be appropriate to ask your doctor if stopping herceptin means that you are "cured" I truly doubt he/she will say that. You might also ask whether he would stop the herceptin if it was his wife,mother, daughter?

Before doing anything go for one or two second opinions and put Gina's name into the search function on the yellow bar above. I hope many other of the remarkable her2 survivors who participate here will chime in!

Hope this helps!