[Greg H]

Hey Birgitta!

I think you are right. At least, in my reading so far, it appears that AA folks with short telomeres are less likely to respond to immunosuppression, are more likely to relapse after immunosuppression, are more likely to relapse after transplant, and are more likely to have complications during transplant (mainly because of hidden lung and/or liver problems that are also linked t the short telomeres).

There seems to be less information on MDS and telomeres, but Dr. Dumitriu tells me their team is confident that TERT and TERC mutant folks are all fighting more or less the same problem, whether it's expressed clinically as MDS or AA.

Even though this mutation is not particularly good news, given all those bad odds, I oddly feel more positive and energetic about the fight, now that I have more information about what I'm fighting.

What appealed to me about immunosuppression and the Campath trial was that it made sense. It was a narrative, with a plot line that I could understand. By contrast, some of the other options seem more like throwing the pasta against the wall to see if it sticks.

I suppose I'm just very story-oriented. So knowing that I have this TERT problem, that it's an active field of research, and that there are things we can try, all that makes me more hopeful and confident.

In other words, I'm a little bit crazy. Maybe MDS makes you a little bit crazy after a while.

I'm also concerned about my daughters, who will need to be tested for the mutation. But, apparently, plenty of folks with the mutation never have clinical symptoms (and neither smokes, which is very good).

My platelets and neutrophils have both been hanging in at the bottom end of normal after rebounding post-Campath. The problem is the increased need for RBC transfusions, and I'm hopeful that the Danazol will address that. But, if it doesn't pan out, or symptoms get worse, I could definitely withdraw from the trial and try something else (assuming I'm accepted in the first place).

I hope you are doing well!

Take care!

Greg