Enrolled in T-dm1 Teresa trial

[Shaysmom]

In Jan, I became very sick unable to keep food down. In Feb, it was confirmed mets to my stomach.
Best option was to try for Terrsa trial 2/3 get tdm1 1/3 get physicians choice. The trial just started enrolling and not all of the 175 sites are open. I had to wait four weeks to get on the trial during which I ended up hospitalized almost two weeks with complications. This will be my seventh chemo regime.

I got dced from hospital Wed and went to start trial on Thursday. Don't you know I got randomized to non t-dm1 arm. My oncologist is really upset. Said I can't catch a break over last 9 years. It was my best shot. I had seven years stability herceptin, tykerb did nothing.

I was frustrated bc I could of started RX weeks ago if I knew it would of been physicians choice. There is no crossover opportunity so if I progress they will not allow you to have tdm1. I was also told bc trial is brand new there is essentially zero chance of expanded access reopening up.

I didn't qualify for eap before it closed bc I hadn't failed the tykerb then. I lost 30 pounds in two months. Now have pleural effusion.
I did a researcher marketing study when they thought tdm1 was going to be approved in 2010.

I knew there was a chance I would not get drug. 10 years ago I did a study when first dxed trying to get Herceptin but was also randomized to 1/3 that did not get Herceptin. But that was at end of study and they ended up opening it up to everyone.

I feel like the FDA has signed my death certificate.

Even onc running the trial she said its had problems bc of Avastin. Yet Avastin is still available. I have friends on it but I have no chance at getting the drug that could save my life. Help me see my 11 to grow up, graduate 6 grade, start middle school.

I thought I was ok with just getting Gemzar but reading all the success stories of tdm1 makes me so frustrated for myself.

Kelly