I just wanted to let you know that this coming Monday, October 2 I'll be entering a drug study at MD Anderson. The drug, called BCX17777-C-04-105. It is a single dose/day of Forodesine Hydrochloride. There has been some good success with drug, especially for Sezary Cell Syndrome patients. Here is the description BTWw, the coordinator said I tell you about this, but of course there will be things I won't be able to share since this is a drug study.) anyway, Forodesine hydrochloride is designed to block an enzyme in T-cells, causing them to die. T-cells being the malignant cell in CTCL is the only white blood cell that is affected. So far there have been no side affects, or so they tell me.
To prepare for this I'm off my 4 Targretin per day and no photopheresis. I have to say, I'm on day 20 and my feet that were looking so good, are getting real thick skin and very big splits! I'm hoping the new drug will kick in quick! I had forgotten all this split hands and feet stuff. Even though I was doing well on my Targretin and photopheresis, it was slow going as many of you know. My skin has gotten so dry and I'm flaking even though I still get to do my wet wraps (Triamcinolone cream all over my body, then wrapped in hot wrung out towels, then wrapped in trash bags, and blanket). I can only go about 8 hours a day w/out wanting to tear my skin off, or at least my clothes. So if you see me in my pj's out and about, the only thing that feels OK, just keep smiling. I'm not sure what the State dress code says about wearing your pjs to work!
I go to Houston for 4 days next week. Day one, I have my blood taken ~6 times: 1st draw, dose (meaning I take my pill), 1 hour later blood draw, then at 2, 4, 6, & 8 hours. Then the next 3 days, blood draw and then dose. Or maybe it's dose then blood draw ;). The coordinator wasn't sure. Builds lots of confidence ;)!
Anyway, I'll do my best to update my blog weekly, if not daily.
Ya'll pray that God will use this once a day pill to kill off all my T-Cells. I keep having visions from the movie Van Helsing, there is a part where Dracula's "children" are killed due to Van Helsing killing Dracula. Anyway, when they die, they explode into this green goo... and that's how I see my T-cells dying when the new drug enters my body!!!!
Because I'm off everything, I've got strep throat this weekend, and feel pretty miserable. I can barely walk because of the cuts on the bottom of my feet. The really sad thing? No matter what I do, they aren't healing. I'm soaking them, I'm wrapping them in Saran wrap, I'm covering them in antibiotics and steriod cream... AND the REALLY SAD THING.... I can't wear my high heels. WAAAAAA. I know you all feel for me.
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