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D-MoZone is the place to find out what’s new with pianist/composer/educator Diane Moser. Keep an eye on this blog for updates on music, health, gigs, fundraisers, random thoughts and all things D-Mo. And please keep sending your thoughts, good wishes and comments this way—they’re always needed and always appreciated.

Saturday, January 16, 2010

Life Raft Support Group

So I just returned home from an informational meeting of the Life Raft Group-http://www.liferaftgroup.org/
they are a group dedicated to helping people like me with GIST-what an amazing group of people!
They had a presentation by a GIST specialist in Colorado-via WebEx-who we heard over the phone and watched a power point presentation about GIST, Exon numbers/mutations, and the various treatments that are available now, and new ones that are just getting out there.
I am so impressed with this group by their dedication and their hard work. They have their own staff of researchers who work with doctors, researchers and drug companies on a multitude of issues concerning GIST. For example, when I new drug is being developed, they send their staff to the drug company and talk with their researchers and provide input from Life Raft members.
There are now Life Raft groups in 50 countries-that's a lot of input.
The most exciting piece of information I received today is that I can send them tissue samples from my tumor (and I'm hoping the pathology department has kept those tissues in paraffin) and they will provide a gene mutation test on the sample and then add that sample to a tissue bank for GIST cancer researchers. This is great news! I have been trying desperately to get my doc to do the gene mutation test-but he doesn't know a lot about that.
The reason for the gene mutation test is to find out what exon number I have-which will in turn tell me several things:my chances for secondary mutations, and,if the dosage of Gleevec needs to be increased, or if I should be on another drug.
There was no talk of getting off of Gleevec.
They talked about 10 years survival rate as being the new thresh hold-when several years ago it used to be 5 years.
So you know where I will be popping into on Monday morning-that's right-my doc's office-let's get this show on the road already!

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