T-DM1- Carolyn and OFF LABEL DRUGS

[Lida]

Carolyn and group,
T-DM1 seems like the most promising treatment for me too! But I have found these trials too often restrictive as to past mets, chemos , I have had many, and locations. Given my family situation, many medical woes, it would be a hardship for me to travel such a long distance. I totally agree with you, Carolyn. If people less heavily treated than us, can obtain these meds, why can't we (especially if there is nothing promising out there) be allowed to make the decision to take the risks of a new promising drug rather than giving up our lives as long as we sign documents absolving the companies of most legal risks. Please let me know what you find out and if there is someone I should write letters to.

Also, if anyone knows of OFF LABEL DRUGS WHICH ARE APPROVED FOR OTHER CANCERS which may be argued to be helpful for breast cancer due to- ie earlier trials which had breast cancer patients or some trials of solid tumors, or even trials in another country, PLEASE POST and then we may be able to ask the onc for them. The oncs seem to need a trial or trials to feel at all comfortable with this and to back themselves up with insurance. Fighting with all of you,
Lida

[Believe51]

Lida, Ed and I are going to Dana Farber on Wednesday this week. He too has been heavily pretreated with chemotherapy. Also, his brain will not withstand anymore radiation of any kind and an operation is senseless.

Most of our options on the ongoing list I have are.....dangerous shots in the dark, some trials, some compassionate use, some off-label. I am praying that the 24th brings to us some more hope. Most information is about the brain mets and the ongoing systemic issues he has. Not sure if it can help others unless they have brain mets.

I so know what you feel, this is an awful place to be. When this list is revised I could share it with others. Right now I want to make sure that this list is as wonderful to Dana Farber as it has been to Ed's entire medical team. Also, there may be more recent research available.

Thanks for posting this, this deserves a thread of its own also.>>Believe51

[Carolyns]

Hi Lida,

I will keep you posted. I have a second consult on Wednesday with another oncologist. I am very fortunate to live in Florida and I have many treatment center options.

I went back and re-read some of your posts and it seems like you have run through treatments at a similar pace to me. I couldn't tell all of the treatments that you have had but I wanted to share that I did get 3 months stable on Herceptin combined with Tykerb. This was not in a trial and I was able to get it shortly after Tykerb was approved (good timing for me).

As far as off label drugs treating breast cancer... I was totally unaware of that fact until recently. I had a good run with Gemzar and as I understand it that was off label as it was approved as a treatment for other cancers. My doctor is very progressive / cutting edge and only treats breast cancer patients. She has a large patient population of young breast cancer patients like me. I wish I had more information for you and I will keep you posted on what I learn. It looks like Doxil may be up next for me too. Having had CAF once and my Dad has congestive heart failure... that option scares me.

Let's hope that: A) The new TDM1 trial comes out fast (the one Joe mentioned) B) We are not excluded for any medical / treatment reason C) We can get in before it closes out. D) Expanded access for TDM1 gets approved fast.

Love, Hope, Peace, Carolyn