519DTG: This clock ticks fast

Yes this countdown certainly does move fast but is it even vaguely accurate?

Yesterday I spent considerable time looking up actual journal articles (unfortunately mostly just abstracts since journals think I should pay them a fortune) and discovered there is considerable debate about how to score the various subtypes of MDS and thus pick a reasonable estimate of the prognosis. I did learn that the original systems were supplanted in mid-90s with the IPSS system which itself is either modified by or superseded by the WHO system. And even more recent articles of the late 2000’s indicate newer approaches that may be even more accurate.

It’s clear from all this (short of full genome sequencing data) that these are the important factors:

  1. % blasts in marrow
  2. ctyogenetic damage
  3. peripheral cytopenias

Now there are a few big issues why the prognosis is so vague:

  1. MDS is more than one disease and even under the umbrella MDS term only about 11,000 people are diagnosed per year (in the U.S.) making this a relatively rare disease and thus one with probably less research aimed at it
  2. To get survival data and/or progression to AML takes following a group for at least a decade and thus any scoring system is use today will be relatively old
  3. It takes multiple studies and then consolidating those results to get anything approximating consensus and of course that adds to the time before having any good results
  4. The cytogenetic methods used in most scoring systems are fairly antique and doable with simple staining and optical microscopy techniques; newer genomic techniques have relatively rarely been applied and something like a MDS gene chip is way off in the future.

As a result of all these factors it’s difficult to pin down a prognosis. It’s particularly difficult for me since even though I have time (and knowledge/analysis capability) to combine all the studies I don’t have access to the full text of the latest data.

So here’s hoping my oncologist has the time (and inclination) to read all the papers and formulate a modern approach, but I suspect the diagnosis methods she uses are still fairly conventional and relatively non-modern (modern probably also means expensive).

So, of course, that makes me wonder if I should find some high-tech specialist center that can use more modern techniques to see if the answer can be more refined.

And, in fact, I really don’t have an “official” prognosis anyway. IOW, I haven’t been put on any of these scoring systems. From what I do know (which is less specific than I’d like, I think my doc doesn’t understand my ability to understand more detailed info so she sorta gave me the dumbed-down version) right now my ctyogenetics are clean (she claimed no evidence of chromosome damage) and also my ctyopenias are still borderline normal (or between bottom of normal and top of abnormal, i.e. my neutrophils, just out of neutropenia range on 3 out of 4 tests). Since I had the biopsy the %blasts must be known but I don’t know it. With these risk factors my scoring probably puts me in the low on int-1 categories which would give me median survival that is better than my current DTG estimate (based on int-2 median). Plus given my age, relatively early diagnosis, excellent fitness otherwise, I have ever reason to believe I could beat the median. BUT, it’s still a crapshoot without more information.

So I’m not going to revise my DTG estimate until I have more data. If I had to guess now I’d move it more in the 3 year range with some (slim) possibility of 10 years. And the high end of that range is not that much less than my statistical life expectancy anyway.

I can probably assume (short of the diagnosis being wrong altogether) that I’m definitely <20 years, which means I most likely bypass my previous greatest fear, that was, going broke before being dead. Now it looks more likely dead comes first.

So on the trip in Texas in a week I’m pinching pennies a bit less so there is some silver lining to this.

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About dmill96

old fat (but now getting trim and fit) guy, who used to create software in Silicon Valley (almost before it was called that), who used to go backpacking and bicycling and cross-country skiing and now geodashes, drives AWD in Wyoming, takes pictures, and writes long blog posts and does xizquvjyk.
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