Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 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 Quote Link to comment Share on other sites More sharing options...
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