An explanation

Roobeedoo commented: Maintenance isn't working"? I am confused - I thought you were in remission? (Sorry about the rash.)

Allow me to clarify. The Revlimid and Thalmid drove me into remission, but they were also being used as maintenance to keep me in remission. The chemo beat the cancer back and was expected to keep it there for a while. Now if I can't use Revlimid or Thalmid, there will be almost nothing to keep the cancer cells from replicating, evolving, and overwhelming my system again.

One minor thing I haven't discussed much is a little thing called evolution.

Since I developed this lovely disease, the cancer has gone thru at least one evolution and has become another form of MM that doesn't react to the standard treatment I received in the past. It is currently responding to the course of treatment we're using now, but it's expected that the disease will soon evolve into something that isn't affected by Revlimid or Thalmid. The cancer will develop its own immunity to the chemo. This could happen next week or next year. Nobody knows.

But the point is that I'll eventually have to deal with an unfortunate truth. There will come a day when no chemo can fight it any more. This situation will be recognizable by a single event..... My blood numbers will go awry, and they'll do it in spectacular fashion in a short period of time. I'll suddenly go from "unquantifiable" to "OMG!" in a month.

This will be the point when we say, "We should have done the transplant LAST month."

See, the best transplant results are realized by patients whose disease is least active at the time of transplant. We want my numbers to be low, low, low for transplant. It improves the response and lowers risk. But if we wait too long and the cancer makes progress, we shift the scales of survival away from the patient.

We had been thinking about doing the transplant in September or October. But without a working maintenance program we'll probably have to do it earlier. Why? Simply to lower risk. We can expect the cancer to run wild without the restraints of chemo, and we don't want the cancer to have a head start on us before transplant. We need to do the transplant before the cancer wakes up again. Our window is short.

Can I do it in July? Certainly. August? Yes. Afterward? We're running a risk.

Meanwhile I wonder if the rash is comparable to the catfish/seagull of dexamethasone, or the GVHD from the transplant for that matter.

Meanwhile, the house is for sale and we're moving.