Dr. Treon called me tonight to say that with the tumor load in my marrow (95%), it may be better to go with a Rituxan-based treatment. He hasn't seen tumor load decrease with RAD001 treatment in the short term - that is, at the three month point - in any patients. He hopes to see it at the six month point, but that data isn't in yet. At the same time, he said he could support a decision to go ahead with the trial, but that it might require more vigilance and patience on my part. He wasn't specific about what adverse events might occur if the tumor load doesn't go down, other than likely continuing worsening of the anemia.
He would lean toward Velcade-Dex-Rituxan. (Dex = dexamethasone, a steroidal anti-inflammatory and immunosuppressant). Velcade is a biologic drug, so that while it tends to kill tumor cells, it doesn't damage DNA. This means that there is less likelihood of its causing other cancers later on.
So now I'm confused again. I have an appointment with my hematologist in the morning, and will see what his perspective is, even though he doesn't have a lot of experience with WM.
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