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October 08 Oct 6th - Visit at OHSU regarding Ariad trialAs Tyler put it on his blog, he and I had a road trip on Tuesday. I had learned about Ariad trial drug on the Leukemia Discussion board, by Beth who had been in the study for 3 months. She has gotten such great results that her transplant that was scheduled, is now put on temporary hold. Beth's situation is that she has a known Mutation that Gleevec and Sprycel do not work on, so she is a perfect fit for the study. She also pointed out some other sources, so just in the past week I've learned from a couple others in the study, who are also having some great results.
So Tyler and I caffeined it up in Seattle and headed to Portland. It was so nice to simply catch up with Tyler, and our 3 1/2 hour ride flew by and we were in Portland before we knew it. There is something to be said about the ability to talk to someone about pretty much everything in the world, and for those who know Tyler, he's a wealth of knowledge and insight. I know not to challenge Tyler in Golf or memory game. He even shared with me his double super secrete method of counting cards in spades....
So we met with Dr. Deininger, and it was such a comfortable meeting. He took the time to explain what I could expect on trying dosage escalation on current drugs, risks involved with all options, and how Leukemia works in your marrow. Dr. Deininger explained things very clearly and in terms I could understand. We then went into details around the study, and his nurse had brought us some documents to take and review.
Basically, while no trial doesn't have risks, I believe that I would be a good candidate for the trial. We felt that Dr. Deininger felt the same way, although he was very clear to be neutral. I never felt pressured to go one way or another, an approach I am very comfortable with. He didn't know anyone on the top of his head that had the exact scenario as me and benefiting from the study, but he was going to check.
As Tyler and I left OHSU, Tyler looked at me and pretty much said " I can't see why you wouldn't do this"... Needless to say, I'm in agreement. When I got home that night, I got to talk to Cynthia and she is fully supporting me, even with the prospect of me having to be in Portland for the better part of a month. Without her support, I wouldn't even be able to get a grasp around what I need to do. I know I've said it before, but just as Tyler clearly attributes his strength to Mandy, Cynthia is my source of comfort and strength.
So, that night I sent an e-mail to Dr. Deininger, and said I was formally sending my request to be part of the study. I heard back from him last night and he will let me know what the timeline will be. I am cautiously optimistic about what this can do for me, but I know for certainty, that I would always think about what if, if I didn't pursue this path.
I'd also like to thank everyone for their support and kind words. It's been a huge morale boost ! Comments (3)
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