Thursday, May 28, 2009

MDS: Reality Check

Tuesday's visit to the MDS specialist has brought me back to earth. With a thud, I fear.

Seems that I'd lost my grounding somewhere along the way. Seems I'd convinced myself that current treatments could arrest this syndrome sufficiently to allow treatments to be suspended; that once the platelet count reached normal (or something resembling that), I'd be stabilized and would need only monitoring.

Call it denial. Call it self-deception. Call it what you will. Just don't call me late for dinner?

What we learned from Dr. MDS—or re-learned, really, as we knew this already but had let the knowledge lapse—was this:
  • Vidaza is forever
  • life expectancies on Vidaza are basically undefined
  • the drug will likely stop being effective at some point
  • when efficacy fails, a bone marrow transfusion is required
  • there is no cure except bone marrow transplant
  • transplant success rate is 60%—at my current age and disease stage
  • transplant mortality rate is 15%
  • those percentages decrease and rise significantly with advancing age and stages of the syndrome
  • transplants cost $1 million
  • the cost is covered by our insurance, but...Medicare currently doesn't recognize MDS as qualifying for transplant coverage...so, if we wait long enough, that might be an issue
I'm back to feeling very mortal.

Dr. MDS did say we're following the correct course for now. He also said there are three drugs "in the pipeline" that might well augment Vidaza's effectiveness.

Encouraging, too, are the fact that Vidaza
  • hasn't been on the market long enough to show statistically significant data for long-term results
  • was trial tested only on patients with in Stages 3 and 4 of the disease; I'm classified as Stage 2 (and a relatively low Stage 2, at that)
  • showed in trials an average increase in life span of 50-75%
As Dr. Primary Care said yesterday, "Basically, you're in uncharted territory."

Is this the way Hudson felt when he steered his boat upriver from Manhattan looking for an inland passage? (Or was he actually looking, like so many NYC visitors, for a place to park?) Did Lewis & Clark share my uncertainty?

It's taken a day to recover from being hurled back to earth by these renewed revelations.

But, as long as the platelet count continues to rise, and as long as I continue to gain energy, I guess there's little choice but to unfurl the sails, load the wagons, saddle the horses, and follow the great explorers' footsteps into this uncharted land.

A map? A map? My kingdom for a map? Or, maybe a GPS?

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