Thursday, May 15, 2008

Clinical Trial Update from May 14, 2008

Hi, All - I went down to St. Louis yesterday for my 6-weekly visit. No CT scans this time; I'll have a scan the second week of June.

I just passed my first anniversary on Sutent and doctors with the clinical trial are pleased thus far. In the past year, I've had no new tumors and no growth in the existing tumors. There has even been some shrinkage in some of them, forwhich I am very grateful. They're a bit concerned that some of the medical side effects (like anemia, immune system suppression, Hand-Foot Syndrome) seem to be getting more pronounced, but not to the point that they think they need to suspend treatment or reduce the dose. Personally, I'd be happy if I could taste things again, but that's a small thing. (There's an interesting blog entry from by kidney cancer patient on what he calls "Sutent Mouth" that pretty much matches my experience.)

The study leaders still plan to present a paper on the study this summer. Hopefully, that will lead to an expansion of the study and maybe I can participate in it from Lincoln, rather than going to St. Louis every 6 weeks. (Although I'd miss seeing Sara's aunt and cousins if I didn't do that!) They took a picture of my eyelashes this time to show to other doctors: The ends are white (like most of the rest of my hair) but the roots have turned dark in the 2 weeks I was off the drug. It makes for a rather odd look. (I just hope I get model credit if the picture is published!)

My next trip to St. Louis is June 25 when I'll get my latest CT scan results.

Thanks for all your prayers and support for me and my family. My Lincoln oncologist recently had a stroke. He's expected to make a full recovery but I'd appreciate it if you could include him in your prayers as well.


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