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Crossing the ten year line in the B2222 trial for GIST

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Here is a post from my friend Marina on one of the GIST support groups. As

a brief introduction to Marina, she was already in hospice when she was able

to get into the B2222 trial.

Subject: Crossing the ten year line in the B2222 trial

Back from a quick trip to Boston. The appointment counted as my ten mark in

the B2222 trial (400 mg daily Gleevec). The holes in my liver look like

old, gray, dry crater scars on the moon. Though I understand that the

doctors say residual live KIT positive cells will remain in the lesions,

when I look at them on the CT images, I think of dead powdery dust.

Since there isn't much to talk about GIST-wise any longer, my DF doctor and

I sat and went through my CT images on his computer screen and looked at

other things in my abdomen...particularly the vasculature on my ovaries. He

called down and talked to their radiologist and in real time I got more

input about those blood vessels, which seem to be a benign condition. I got

a mini-radiology lesson from him. I give him high marks for being one of

the nicest and most cheerful doctors I have ever dealt with. That is his

demeanour, and I have learned his reputation with the staff in the clinic.

I figure during this doctor's average day at a major sarcoma center, he has

to deliver bad news, or news of terminal disease over and over again.

Another B2222 patient had commented in April at the ten year anniversary

meeting that he felt like imposter when we are walking through a cancer

center that has folks wearing masks over their faces, bald heads, or in

wheel chairs. I mentioned this to the cheerful doctor, who smiled and

nodded because he smiles and nods a lot to his patients. He understood,

because it is true. At some point along the ten years, my liver once

overtaken by cancer had became remarkably " unremarkable. "

If ten years ago today, someone had dumped a truck load of STI-571 capsules

in my front lawn with a note on the porch...take 400 mg every day, and

you'll have no problems, no need for follow up, tests, CTs, nothing...just

take the pills every single day...well I wouldn't have believed it. No one

would have believed it. And yet, it would have turned out to be perfectly

true. I would have probably also been insulted feeling that someone had

minimized my dire situation.

I have another image of myself from the movie Oh Brother Where Art Thou.

Just as Clooney and his two friends are about to be hung by the evil

sheriff, an enormous wall of water comes from nowhere and sweeps away

everyone, the hangman's noose, the evil sheriff. C is next seen

floating on a piece of wood in the flood, smiling He floats past a cow

standing on a roof top in the flood. He blinks for a second because a blind

man at the beginning of the movie had told him that he would see remarkable

things on his journey including a cow standing on a roof.

I know for sure if ten years ago today someone had told me that GIST would

become a highly treatable disease, that I would be alive ten years into the

future, and that I would have had the opportunities to interact with some of

the scientists and pharma companies who made it happen...I would have

considered it as something like being told that I would see a cow standing

on a roof during the 1930's. But it happened!

Marina

ID: zaviem

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