Hey Nadia!
I'm glad the Great Debate that Hopeful and I indulged in was of some use. I, too, went for the Campath after a lot of the pins fell into place (Trisomy 8, HLA-DR15, normocellular marrow rather than hypercellular, under 60). Those same pins, of course, also predict response to ATG/CsA.
Interesting that the Campath protocol is now using subcutaneous injections. I hadn't heard about that. Is this still Clinical Trial NCT00217594? In my case, the first couple of doses of Campath (including the initial 1mg trial) produced violent rigors. After that, the worst thing was the Benedryl they gave me before the injections. It was actually a little ridiculous to be using up bedspace -- though the NIH Clinical Center bedspace was certainly cheaper than trying to stay in a Bethesda hotel for two weeks. Yikes!
Will you do inpatient for a couple of days, then outpatient?
So, they found one cell with deletion 5q? If so, you are in fact likely to get a recommendation to try Revlimid. You might ask that your upcoming BMB include FISH for deletion 5q. FISH uses 200 cells and might give a better sense of whether the one out of 20 they found in the karotype analysis is just a fluke.
20% cellularity is pretty darned low for MDS; generally MDS folks are mostly hypercellular. But I'm guessing you must have significant dysplasia in your cell lines if you've been diagnosed as MDS instead of AA.
As for me, post-Campath, I have entered the NIH trial of Danazol for folks with tiny telomeres and TERT or TERC mutations. I wrote about it in October
here and plan an update shortly (but have to get a newspaper on the street first).
Other folks are in the same trial.
The general feeling amongst the docs at NIH is that I in fact responded to the Campath -- my counts went up, including in particular my reticulocytes -- but then I crashed. Relapse is apparently a common problem for folks with too short telomeres.
Keep us posted on your progress, and don't hesitate to ask any questions that come up.
Take care!
Greg