Dr. want me to d/c Herceptin

[Annemarie]

Hi,
I have been on Herceptin 1.5 years and in this time I have been NED. Prior to that I had bc with brain mets. I am a 6 year bc survivor. I really do not want to d/c Herceptin until Tykerb comes out. Any thoughts? My Dr. is at the ASCO meeting and said he will talk to some people about my case.
Annemarie

[heblaj01]

Annemarie,

I certainly cannot give an advice one way or an other. Since your onc has an open mind & is still looking for answers at ASCO while you are NED you are then taken care for the short term. I can nevertheless understand your anxiety & doubts about what to do.

I can only speculate about the motives of your onc.
The lack of knowledge about long term side effects of Herceptin (cardiac or unknown ones) may be a factor when balancing the unknown benefits of long term treatment for a patient already NED against the possible drawbacks.
A common attitude of oncs is to wait for a change in disease status in patients who are stable (even if not NED) & have no pain before offering a new treatment. Older treatments usually do not extend survival when given preventively & can reduce quality of life. But Herceptin could be different & it is undertandable you are worrying about brain mets.

He may be fearing that prolonging Herceptin might revert the disease to ER+ as has been observed in some cases.

You may also recall that a study in Finland showed that a 9 weeks Herceptin treatment had outcomes as good a longer treatments.

Finally, try reading one of the long post by Gina where she describes in detail how she stopped treatment 4 times over a period of about 4 years, resuming Herceptin every time mets came back to see them disappear each time (she had a cooperative onc also willing to adjust dosage to the importance of mets).
I can't say that repeated readministration of Herceptin will work with everyone but a small study showed that some patients who have progressed on Herceptin still benefit on first readministration.

[Cathya]

Annemarie;

We had a similar post not very long ago and my view is the same....stay on herceptin if at all possible. As Joe pointed out there are women who have been on it for around 10 years without side effects. Email Joe for amunition for your onc. I am truly amazed with metatastic disease that he would take you off.....especially since he doesn't seem to have a plan for the future. If you MUST go off herceptin I would demand tumor marker tests such as the Her2 Serum test to be run regularly. If your markers start to go up consistently then I would have an agreement that you can go back on herceptin ....PRIOR to any significant tumor development. As was suggested....search out Gina's posts. She has been very effective in monitoring her disease this way. I would also search out the best supplements, diet etc. to try to maintain your NED status. All the best to you.

Cathy

[AlaskaAngel]

Should you decide to post your onc's decision, it would be interesting to hear it.

I can't add anything to what the others have said, except to say that even though I have not been on Herceptin personally my general impression of the big picture painted by those with mets here would definitely lean toward staying on it. That is the one major meaningful influence that is missing from the decisions made at ASCO. A lot of oncs are attending the conference, looking for answers, but it is hard to say just how much of the actual patient experience and results end up influencing decisions. Those attending from HER2support.org provide that kind of contact and I hope they each know how valuable they are....

AlaskaAngel

[Annemarie]

Hi,
The main reason my oncologist wants me to d/c Herceptin is because it does not cross the bbb and I have been NED other than the brain for 6 years. He seems to say the data indicates Herceptin only for a year. He knows I am a real pit pull and will get other opinions to stay on Herceptin. He is very reasonable and if others agree then so will he. I will fight him on this issue as I have in the past!
Annemarie

[Annemarie]

Hi,
I forgot to add that my markers have always been normal even when I have had brain mets.
Annemarie