Should I continue Herceptin ?

[Sally]

I just wanted some different opinions before I ask my doctor about my treatment plan. I am currently getting Herceptin every three weeks. My doctor said we are going to take this one year at a time. I have been NED for about 1 year and my one year of Herceptin is over in December. I haven't asked him what is in store for me after that. I plan on asking him tomorrow. I'm nervous that he is going to say that I have been doing so well that my Herceptin is over. My original dx was stage IV. I had a 2.5 cm tumor 8/16 nodes were positive and I had a spot on my liver. I really value your opinions and advice. Of course I follow the advice of my doctor and trust him. Sally

[Esther]

Sally from my personal experience, I am NED from bone and liver mets. I will continue to be on Herceptin in combination with whatever treatment regimen is indicated for the rest of my life.

As her2+++ we over-express a gene that encourages cancer growth. Herceptin helps to keep that in check. I intend to continue with Herceptin in order to suppress the over-expression of the her2 gene.

Currently I am on Faslodex and Herceptin and doing well.

I know that Ginger Empey, the one they did the Reader's Digest article on and was in the original Herceptin trial with Dr. Slaman, has been on Herceptin for 10 years.
Has your onc. given you an indication that he feels you should discontinue Herceptin treatments?

[StephN]

Hi Sally -
As a nearly 4-year survivor on Herceptin, I have great faith that this can be very effective as I had some major, fast moving mets.

Is your bloodwork taken more often than every month? Do you have any tumor markers drawn along with that? Which ones? How have they gone up and down?
Have you have a PET or PET/CT fusion scan??
These are all ways that can help determine your cancer status.
Have you had a brain MRI?

You know that since you are already stage IV the tumor cells are still running around in your blood and lymph systems - there is no way for the chemos and Herceptin to get EVERY last one of them.

If you did think that a break from Herceptin is the thing to do, keep up all those marker and blood draws.
Also, you did not state your age.
I was 50 when original DX and 51 when mets occurred. Am 56.5 now and feel that Herceptin every 3 weeks will continue to be my treatment unless they come up with another drug effective against HER2 overexpression.

[jener8er]

Hi Sally, I'm in the same boat as you - Year of Herceptin is up in December. But my onc has already told me that is it, unless Genentech comes up with some data to prove that 2 years is better than one. I feel like directing her here to hear all your stories! I will beg to stay on Herceptin if I have to, although once my doc has made her mind up, that's it. I've had PET, Bone scans and get my tumor markers about every 6 weeks. No brain MRI, ever. My CA15-3 is down to 19 (YAY!). I will insist on at least regular tumor marker checks if they stop my Herceptin. I was stage 3a @ diagnosis - don't know if that impacts my treatment compared to yours? If I were you, I would try to get at least another year of Herceptin.
Jen

[Cheryl]

I'm sure many of us have this same question, no matter what stage we are at. Does anyone know when there will be more information from the clinical trials for the earlier stages about length of time on Herceptin (1 year vs. 2 etc)? I asked my onc. about this last week, and she said there is even an 18 month arm, but we don't know when recommendations will come out of these trials. Anyone with info or speculation would be much appreciated.

[Unregistered]

I am curious about staying on herceptin for more than 1 year for Stage 1. I was dx in 6/05, er-pr-her2+++. So far I am scheduled for 1 year of herceptin after I complete chemo A/C will have 4th treatment in October. Anyone anticipate trouble with insurance paying and will extended timeframe eat up life time benefits.
thanks

[Unregistered]

Thanks for sharing. I forgot to tell you that I was diagnosed at the age of 36. I will be 38 in November. I don't keep track of my tumor markers and blood work. I do get blood work done every 3 weeks. I think the tumor markers are every 6 weeks. My doctor always says that it looks good. I get PET scans, MRI, and CT scans every 3-4 months. Mugga scan once a year. I just got back from my treatment and the doctor said I will continue for another year and a half which makes three years total. He said that is a minimum amount of Herceptin and we will make those choices as the years approach. He basically said it will be my decision assuming I am still NED and everything is going good. Thanks again for being there with your experiences. Sally