I'm feeling a little low today. I was transfused 2 units of blood 5 weeks ago (on May 13, 2008). It was the first time I needed a transfusion. I was like a new person!! I was able to do things I haven't been able to do in so long. So, after 5 weeks, I think I'm ready for another transfusion.
But, what do I do now?? I've been seeing specialist after specialist for treatments options. I don't want to go on needing blood every 3-4 weeks but if I don't do anything, that's the way it's going to be. I looked into a few clinical trials...
1. Arsenic & ArasC -- Dr. Eric Feldman, Weill-Cornell Medical Center -- after reading the consent form I emailed Dr. Azra Raza at St. Vincent's Comprehensive Cancer Center. She said that it's way too toxic for me and that I shouldn't even consider it. She suggest I get in touch with the Mayo Clinic and try to enroll in one of the JAK2 inhibitor trials they're running there.
2. Avastin -- Dr. Eric Feldman feels that it's not aggressive enough for me.
3. Targen JAK2 inhibitor -- Mayo Clinic -- stated clearly in the consent form is the fact that it's been tested in animals but never in humans.
Tomorrow I have an appointment with Dr. Michael W. Schuster at the Bone Marrow Transplant Unit at Weill-Cornell Medical Center. It's mainly a fact finding mission because, at this point, I find the idea terrifying. Unfortunately, it may be my only option.
More after.
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