3 years + on Herceptin, Why

chrisy · 10-13-2009, 11:31 AM

Hi,

True, there is no data indicating when/if it is "safe" to discontinue Herceptin once diagnosed as Stage IV. There are several people who post here who after having been NED for years on Herceptin have stopped. They are in uncharted waters and are being monitored very closely. All of these folks were at least 7 years out although there are some who are asking this question after 4-5 years.

It is not clear to me from the stats in your signature why you are classified Stage IV. Did you have cancer spread to other places besides the axillary nodes? I see you had Pet/CT scans, maybe cancer was detected elsewhere that you did not indicate.

I guess the short answer is, most people diagnosed at Stage IV can expect to continue on Herceptin "indefinitely".

The treatment cost varies widely, and remember that most insurance co's pay much less than the original amount billed. I think mine was around $3000 every 3 weeks. Still a lot of money. However, continuing on Herceptin is standard of care, so most insurance companies pay.

shellbuck · 10-13-2009, 05:51 PM

You are right. I left out that the cancer spread to my lung, but chemo took care of that.

Thanks for your info. Although I've been on this therapy for 3 years I still learn things from folks like you.

fentonlady · 10-26-2009, 04:40 PM

Hi I'm new to this site and finding this interesting reading - many thanks. I have a question I have been on Herceptin since June 04 for liver mets. I have been well and CT scans remain stable since Sept 04 when chemo finished but herceptin continued.

My oncologist is now suggesting I should try discontinuing herceptin and be monitored very closely. Very nervous. My questions are: is there evidence of longterm herceptin side effects? and is there evidence of progression of disease when herceptin discontinued after long term use?

Any advice/knowledge on evidence so I am more informed for my meeting with oncologist this Friday would be very welcomed.

My interpretation of NICE guidelines (I live in UK) is that as I have no progression of disease or have side effects then Herceptin treatment should continue. Any comments welcomed on this interpretation. Many thanks