Need your advices

norwegian · 03-10-2009, 11:16 AM

A friend of mine was diagnosed with breastcancer, HER2 in 2001.This was treated with FEC only. Two years later she got recurrence - to the bones. Then she was given Herceptin - which was somehow new in our country. She also had Taxol. Every third week she has Herceptin - for 6 years. She works 80% and is doing fine!!!!! Every progression has stopped and she is - well - NED (if it is possible. No pain, no evidence of nothing!)
Anyway - now the doctors asks her to consider to stop having Herceptin. They don't know what this long treatment will do with her heart, liver, lungs etc. (all fine now) And they think may be she doesn't need it anymore..
She gets very scared by this thought!
I think this is a very difficult matter!

What would you do, if you were her?

AlaskaAngel · 03-10-2009, 12:12 PM

I hope that someone who has had/is taking trastuzumab will respond, as I've never taken it. I've been NED since diagnosis in 2002 and am one of the few here who had the equivalent chemo treatment as your friend, whereas most people here have had a taxane as part of their treatment.

If there are no signs or symptoms of toxicity, I would want to stay on it IF that is what she herself would prefer to do. There are a number of those who were able to get it prior to its official approval and who have a long history of taking it.

It is expensive.

AlaskaAngel

Joe · 03-11-2009, 07:02 PM

Norwegian,
There are no long term side effects from Herceptin. There are several here who have taken it for more than 9 years.

There also have been some very few ladies who stopped Herceptin after 9 years and did not yet suffer a recurrence.

There have been studies with those that were in the aduvant study that had recurrences after they were out of treatment, but these recurrences were held in check after Herceptin was reintroduced.

Regards
Joe