trials / brain mets?
 

Hi,
I am new to the forum, but have been reading with great interest over the past few days. I have brain mets that grew through whole brain radiation. I received brain surgery for the biggest met close to the brainstem and was supposed to get stereotactic radio surgery one week later for the other ones. However, that procedure was canceled because the cancer was already growing again at the operating site. Now I am on Tykerb and continued Herceptin (I am cancer "free" everywhere except the brain thanks to the Herceptin). I am feeling pretty discouraged to be put on a drug that helps 5% of the patients. Are there any trials out there people can recommend? I am researching intrathecal Herceptin and have been in contact with Courtney about it. But everything I read seems to refer to leptomeningeal brain disease, not just plain old brain mets.

Thank you,
Beatriz

Re: trials / brain mets?
 

Beatriz;
I in a similar situation with you in that I have one brain met in brain stem (sucky place) and have been looking for trials; also asked CourtneyL for info. I am dealing with radiation necrosis right now and am looking if there are any trials.

Just in case you haven't looked at this site, there's a section of all trials dtd May 2011. I would look there. I would also send a message to the Brainmetbc asking for trial information. Musa Mayer who runs the site has been very helpful to be in giving me two 2nd opinion Oncologists in NY and Boston. I decided to see a neruo oncologist.

Did you see Kavy's post where it appears that Halaven is shrinking her tumors?

Hope this helps. Good luck with the trial search and please keeps us updated. I feel like my back is to the wall at the moment.

http://www.brainmetsbc.org/

Hugs,

Kris......

Re: trials / brain mets?
 

Sorry you have this to deal with! My daughter finished a 2nd round of SRS for 9 brain mets on 4/26 and is now experiencing SEVERE fatigue. She had WBR 5/10 and so that is a contributing factor I'm sure. She is on Herceptin for the liver mets and Zometa every 6-8 weeks but other than that nothing. If anyone out there has any suggestions of what to do next just yell! The tumors are shrinking (so dr. says) which of course is good news, but what to do to prevent more mets and how to deal w/the awful fatigue is another issue! My best to you all
Joyce