Dear all
Have been to the onc and he thinks the area looks sus. I have to have a biopsy tomorrow and then scans on friday and another appointmnet on Monday.

I will then go on the trial for GW5..... and xeloda. The dilema is this. If you are randomized into the arm which does not get GW5... you also do not get herceptin.
This worries me and if I was not going on the trial the next chemo would be xeloda and herceptin anyway.I know it is ethically not fair to abandon the trial if I do not get the arm i want and the onc says the herceptin doesn't appear to be working for me anyway - I think it is - I have only had local progression.
I just feel safer with herceptin.
Can anyone help with dilema

love
linda

Dear Linda -
Your comfort zone is THE most important place to be in this fight. If you are heading into a direction that makes you nervous, veer back to a course you feel more positive about. Getting as much info as possible on the trial and then make your decision.
Personally, I would want to keep with herceptin in whatever combination. That trial would not interest me unless I had a real aggressive change in tumors.
And I am not sure if it is really a question of "ethics" - your life is at stake!

Dear Steph
Thanks so much for replying - I do wonder whether to actually refuse the trial and take the herceptin and xeloda . He aslso said if that fails I can go a trial in Sydney for just the GW5... and they will fly me ther. This feels like the right way to go - what do you think?

Love
linda

Linda -
Try searching this board for Zeloda - as I recall some posts from women with good results. Maybe you can search for some trials in the Web and get a little more info on what the chances are sticking with the Zeloda/Herceptin. You always have the other option in your back pocket.
I know docs are always on the lookout for trial subjects, but you have to feel you are doing the right thing for yourself.
Decisions, decisions .... cancer is full of them!

From what I found out when I had an interview for the trial, the GW.... is in tablet form, Herceptin with Irissa, I may be wrong but that would explain why no herceptin... Oh, I wasn't diseased enough to go on the trial but I have 2 years to have it if I need it, hope I don't.

Hugs Lyn

Linda, I agree with Steph...it's you're life. Do people REALLY feel that they can give up on a treatment that seems right for them for the sake of research. I know there has been mention of this earlier..about not pulling out of a trial because of the potential research outcome. I can't imagine why someone would not put their life and family's life before the "research". It's perplexing...I guess I would have to be in that situation.
Good luck with your decision.

Dear Linda,

Hi there, just read your message about the trial. I just wanted to let you know that I was also almost put into the GW trial. I was not allowed in because I had just had three rounds of rads. I had to be rad free for four weeks in order to make the cut. They didn't want to let me wait out the four weeks without any chemo, they feared the cancer would just take over. So, they kept me on my Herceptin (even though I had mets while on it with Carbo, and taxal) and they also put me on Xeloda. I had done six other chemos before I got the Xeloda and none of them worked. While on the Xeloda I had extreme tumor shrinkage to the point of them not being visible anymore and they can no longer see the cancer in my chest wall either. If you don't get the arm that you want, go with your gut feeling and do what it right for you. I hope this helps a little. I wanted to be in that study so bad, but I thank God for my Xeloda. I have now been doing my herceptin and xeloda since about Feb or March and from what they tell me, they will keep me on it for as long as it's keeping the cancer at bay.

Martha,
I, too, am interested in hearing about Xeloda..have it on my list of questions for sis's doc. on Monday. I recenlty read (maybe from Christine's post??) that taken with Temodor could be effective for brain mets...is this a type of chemo? Obviously, it is safe to take with Herceptin?

Dear Martha
Thankyou so much for replying - it is so helpful. So glad it is working for you, how about the hand foot thing.

love
lindaw

Dear lynn
What do you mean you have 2 years to get it if you need - does that mean the trial is open for that long?

love
linda

Apparently so, that is what the Specialist told me, she gave me her card and said that they would be doing the trial for the next 2 years and if my condition changed to call her....

Love & Hugs Lyn