B is the word.

By , on February 25, 2012

C Word

On Thursday Feb 23 I met with Dr. Bart Scott who is a specialist in myelodysplastic syndrome (MDS). The reason for this is that MDS is my new diagnosis. This is a “secondary cancer”, that is, a new cancer, not lymphoma, one which presumably originated from my transplant treatment in 2010.

The specific condition that has been identified, as I mentioned in my previous post, is Chromosome 5q deletion syndrome, aka 5q-, aka del(5q). Some blood cells produced by my marrow have this flaw. It is thought that these cells, already defective, also have some negative effect on other normal cells, sucking up more than their share of resources (the social metaphor is obvious …). The overall effect is a reduction not only in the quantity of blood cells but in quality as well.  My blood is just lame.

The good part is that there are many other possible signs of MDS (high blas countts in the marrow, etc) and I don’t have those. However, this condition is “pre-leukemic”, meaning that if left untreated it would likely morph into leukemia. That would be bad.

The recommendation is for me to undergo another stem cell transplant as soon as possible. In 2010 I had an autologous transplant, meaning that stem cells were drawn from my own blood, frozen, then put back in after my blood-production system was wiped out via chemo and radiation. The upcoming transplant will be allogeneic, meaning that the stem cells will come from a donor. The good side is that the promise of a new blood production system, if it all works, could fix the MDS, and even greatly reduce the likelihood of a recurrence of the lymphoma (notice how I avoid the word “cure”). The bad side, other than the usual unpleasantness of lots of medical procedures, is the virtual certainty of “graft versus host disease”, GVHD. Like any introduction of foreign cells, there can be a battle between the newly-introduced immune system and the existing one, leading to all kinds of bad effects (rashes, sores, etc). The Catch-22 is that the desired effect is the takeover of the body by the new immune system, so the GVHD struggle is a good thing, systemically, even if it’s bad to live through. So it’s a balancing act.

Another key difference of the upcoming transplant (vs last time) is that this one will be “low-intensity”, meaning much less chemo and radiation than last time. The main reason for this is that going through another high-intensity transplant “involves significant risk of mortality.”  OK then, low-intensity it is. The record shows that there can be successful engraftment even with the low-intensity regimen. So that’s good.

In the mean time I will be starting on a form of chemo tailored to attack the greedy bastard defective 5q- cells my marrow is producing. This is called azacytidine, It is reputed to have relatively few unpleasant side effects, and to do a good job in limiting the progression of MDS to leukemia. It’s possible to be on it for quite a while (a couple of years maybe) but it’s just a maintenance thing while waiting for the transplant to happen. It is administered via injection once a day for seven straight days, on a monthly cycle.

Getting back to the the transplant, where will the donor cells come from? The best case is that they come from a sibling, which in this case means my brother Mike. There is about a 25% chance we will be an HLA match. If we don’t match I’ll have to go on the open market, which can apparently take quite a while. In any case I guess it will be a minimum of a couple of months before the transplant can happen.

So that’s the story as of today. Disappointing, but as always it is a blessing to have the world’s best care near at hand, to have the insurance to pay for it, and to have the support of family and friends. And it will be a good opportunity for many more news-filled blog posts, so stay tuned.


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