On Wednesday night I went to a Meet the Doctor talk with Dr. Jason Westin from MD Anderson in Houston. It started out with a dinner, 7 patients and the doctor sitting around a regular dinner table. Eating, asking questions, sharing our own experiences. This particular event was for Lymphomas in general, so most of it didn't apply to me, but nonetheless, it was a good experience.
The things I took away were that while it's not necessary to do scans frequently, the fact that I haven't had a single CT or PET scan is something that needs to be rectified. I also learned how rare even within the Lymphoma group Cutaneous T-Cell is. I listened to a long list of various treatments that my doctors never discussed with me.
I have a new spot above my eyebrow. It's small, but with the 3 others that have popped up on my nose and legs, its not the direction I want things headed in. Despite getting more Narrowband UVB treatments, the spots are still coming. I want to move to a more aggressive form of treatment before allowing more spots to pop up. So I'm trying to set up an appointment with Dr. Duvic at MD Anderson. I really hope she doesn't look at my spots, say "you're fine", and then recommend not doing anything till its really bad. I recognize that compared to my worst, I'm doing really well and clear except for a few small spots. I still get bouts of itching that are insane. I hate this time of year. I'm glad most of the holidays are over, the stress doesn't help things.
