length of time on Herceptin

sarah · 06-08-2006, 01:34 AM

I've been on Herceptin for over 2 years now and I'm afraid to go off it but I am confused about what's the best plan - to fight to stay on it or to go off and see what happens. I see my main oncologist in July and I will have to think about what to say to him. last time I became almost hysterical when he discussed the possibility of stopping so he decided I should stay on it but I'm not sure how long he can "legally" keep me on it or how long is actually good or bad. My heart seems to stay stable. but sometime before July I'm sure I'll bring up these concerns again.
I have a very sneaky, hard to see cancer. It's somewhere outside the breast between the breasts but only biopsies ever show it and MRIs show it as inflammation. it's like a star field. the surgeon noted it as metatastic but it's "close by" so I'm not even sure what stage I am. I'm not sure how they stage things here in France and I've been nervous to ask directly. I'll have a sonogram of the area again soon because they've seen something suspicious - could be surgery scars or cancer so that may tell more - this after radiation.
any thoughts or information or personal stories about the length of time for Herceptin and whether there's any negative to staying on it as long as I can? There's no way I can get the serum test done here, can't even get the CA27,29.
sarah

Taffy · 06-08-2006, 09:04 AM

Hi Sarah, did you have surgery or are you just being treated with herceptin alone? I wasn't sure from your post. If you've not had surgery and are relying on herceptin to keep your tumour at bay then you should be allowed to stay on it indefinately.

love
taffy

sarah · 06-08-2006, 09:25 AM

Dear Taffy,
thank you for your reply. my first surgery was in 1999, i've had several in 2004 and one in 2005. i don't have a "tumor" i have micro invasions so it's not a nice lump but a spread out field. but actually my question was really about the safety and usefulness of continued Herceptin and people's experiences.
Have you been taking Herceptin for more than a year?
thanks
sarah

Becky · 06-08-2006, 09:56 AM

Dear Sarah

Many people on this site have been on Herceptin several years (I am on a year now so that doesn't count). Christine (Druther) has been on 8 yrs, Kim (CT - aka mamacze) has been on 2.5 yrs, Lolly - 2/3, StephN - 3 yrs so there is alot of experience on this board.

As long as your heart is good, you can stay on indefinitely and it doesn't sound like you are NED but that you do have stable disease so I would push to stay on since there is still disease present.

Kind regards

Becky

sarah · 06-08-2006, 10:20 AM

Thanks Becky for your advice and info.
I've always felt it would be best to stay on it as long as I could - fighting for it, crying, whatever it took but lately I had been wondering if I wasn't being unreasonable or uninformed.
thanks
sarah

rinaina · 06-08-2006, 10:28 AM

Taking herceptin for over one year is all new to me. My onc and our friend who in an onc both said maximum one year. Is this a trial where you stay on longer? Are there studies or were there studies on the safety of staying longer? Is there is research to prove that staying on longer is that much more helpful after a year of being treated with herceptin? I am very confused over this herceptin use after one year of treatment. Also when I complete 3 more chemos with A/C I will be getting herceptin but not with taxol like so many of you. I was node negative stage1 grade3 1.4cm tumor clean margins, er/pr-.