advice to stay on herceptin or not?

[sarah]

Hello,
I saw my onc and he said we should think about stopping herceptin in 6 months. Here in France it will be a mutual decision. I can stay on it for life if I want to. in fact he asked me if stopping worried me. The idea used to send me into a panic but i'm ok with the idea now.
my cancer has NEVER shown up on scans of any kind including a Petscan and MRI. the MRI showed some inflammation that was inconclusive. Only the biopsy showed that it had spread outside the breast.

so my questions:
1. Do I stay on herceptin - I have no ill effects from it
2. What are the best tests to see very small cancer? MRI, Petscan, Catscan. not clear on what each one does.
thanks
Sarah

[suzan w]

Hi Sarah! Good question...how long have you been on herceptin?

[sarah]

Hello,
thank you for answering. I'm a little disappointed that only one person answered.
I've been on Herceptin for 5 years and 5 months, starting March, 2004.
I notice that you only had 1 year of Herceptin but your cancer was stage 1 so that's normal. I was stage 1 in 1999 and not given Herceptin for that reason. 2004 I had a recurrence and it had spread outside the breast so I was put on Herceptin with the possibility of being on it for life.
thanks Suzan and wish you continued NEDism!
sarah

[Ellie F]

Hi Sarah
Sorry I have only just seen your post. When I had my recurrence my onc here in England said I would need to stay on it for at least 10 years if I was lucky that it kept me NED.He based this on the fact that there are often circulating tumour cells in the body years after the original diagnosis. Hope this helps.
Ellie

[Sheila]

Sarah
I was told as a metastatic BC patient as you are, I will be on it indefinately, until it quits working, or possibly if I could ever reach NED. There are a few on the board who have been NED for some time and have taken a break. Steph is one, Christine the founder, Andi BB is another....I have been on it since 2003...still getting it.
Hope this helps.

[sarah]

thanks Ellie and Sheila for your input. Did you stay on an AI also?
I wouldn't mind taking a break but worry that if I took one, I wouldn't get back on it.
I really appreciate the opinions and this website.
thanks and stay NED
hugs and love
sarah

[StephN]

Dear Sarah -
Congrats on long-term NED!
Have not had the time to catch all the posts here lately! Maybe that is a good sign that my life is not so keyed in as a "cancer patient" since I am off my Herceptin for more than 9 months now.

You ask a very valid and important question. There are a couple of threads about this very subject - one was started by Mamacz and one by AndiBB. There are some answers and rationale in those posts.

You may not be getting many responses due to everyone busy with back-to-school, Labor Day doings, gardens, etc. I just had a housefull for about 3 weeks myself!

Here is a link to some discussion on your question.
http://her2support.org/vbulletin/showthread.php?t=39302&highlight=Herceptin

[sarah]

thanks stephanie, i'll check it out.
sarah

[gentry]

what ? what ? my doctor did not say any thing about how long . I am stage 2. What do I need to know.

[Mary Anne in TX]

Hi! I am/was stage 2 and fought to have 2 years of herceptin. I still believe I needed every single dose. But who knows? I am so grateful to have gotten it though. ma

[StephN]

Hey Sarah -
How is it going? Did you come to a decision? I don't know if you found the answer to your questions regarding scanning for best view of any cancer. My understanding is that a PET/CT is the best since the CT will identify tumors or tumor-like places and the PET will identify at the same time whether those spots have any uptake of the radioactive tracer that is given.

So, you may have a spot, but it could be another type of nodule, but the PET will show if there is abnormal cellular activity or not.

Gentry -
This thread is regarding STAGE IV people who did not get Herceptin as part of first line treatment since we were diagnosed before that was any FDA approval for use of Herceptin other than treating metastatic patients. We got Herceptin as a treatment for advancing disease and that is why we have been on it long term.
I am sure you will be fine with the year given to patients now.