I've been in the RAD001 trial for just over 2 weeks now (started Wednesday 6/3). There have been no serious side effects, although I'm writing down every ache, pain, bruise, sniffle, and other potential symptom. If any of them evolve into something more serious, I want to be able to say definitively when it started. I did have a mild nose bleed that recurred every morning for about a week, but I had a blood test today (Friday 6/18) and discussed the platelet count with Dr. Treon. Neither he nor the local hematologist could see anything in the blood count that would cause unusual bleeding. There were no bloody clots in my nose this morning, so perhaps it's gone away, and I'm also not bruising or otherwise bleeding abnormally.
And the good news is that my anemia is improving! At the start of the trial, the hematocrit number was 24.5. It increased steadily in weekly blood tests, and is now at 29.8. It's got a way to go, though; normal is 35 to 52. There are other red blood cell numbers that (it seems to me) should be improving as well, but the improvement isn't quite as clear. Dr. Treon tends to focus on the hematocrit.
But lest we get too optimistic, my white blood count has been going down. Neither of the doctors is concerned, but we need to keep an eye on it. At the start of the trial, the granulocyte count was 2.05 thousand/microliter; it has dropped to .9 (although it held steady at .9 all this week). I'll have another complete blood count (CBC) test on Wednesday, to be on the safe side, and then it's up to Boston on Monday 6/28.
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