Cathy and I spent a lot of "quality time" at Stanford today - I know being squeezed in late it probably was going to be quite a wait, and it was. My doctor believes some of the symptoms I'm having now (slight fevers, borderline low red cell count - although about the same as two weeks ago) are from the progression of the lymphoma. She was also concerned (like I) that chemo doesn't seem to be halting the disease much. Not that they can't find another chemo drug that may knock it down, but certainly any remission wouldn't last very long. Ideally we could stop the progression of the cancer while we try and identify a donor - apparently this process takes at least 6 weeks (if one of my siblings *is* a match, as that's how long the tests take - takes even longer if you need to go to the registry). At least this process is starting; insurance approval for my siblings' (and my) HLA matching tests was just received yesterday, so I had my blood draw today, and kits are on the way to my siblings.
They are running a phase 2 Clinical Trial at Stanford (and 5 to 10 other places) of a drug called R-788 that's shown some promise in stopping the growth of highly aggressive lymphomas like mine (Diffuse Large B Cell Lymphoma, or DLBCL for short). It appeared I am eligible, and they're encouraging me to start soon (tomorrow or Monday). I'm checking with my other "experts", but I liked this as it's just a targeted pill with a much better side-effect profile than chemo - and worst-case if it's not doing me good I can stop at any time and do chemo. Apparently the basis for the science is similar to Gleevec for Leukemia, but this drug is fairly unproven.
My appetite/taste went away again in the last few days, and it appears my "Thrush" is back. They also put me on Protonix for my stomach, so hopefully it'll start to feel better too soon.
I'll update things again when I decide what to do, but seems right now that this pill is worth a try.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment