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Fast-forward to Dec 2011: 31 yrs old with MDS-RCMD
Hi everyone
Fast-forward 3 years and a lot has happened. In the time since, my counts continued to improve - Hgb and WBC climbing to the lower end of normal. All had been fine. So good in fact, I moved to London -- I had a great opportunity at work and my partner grew up here, etc...so we moved. My doc at UCSF said it was fine for me to do. Well, that was about 2 years ago.
In the time since I was having blood counts monitored. I have a very active life with significant amounts of international travel for work. This year they started to decline progressively but slowly. Now -- as of this Monday -- my Hgb is 8.1. I had a bone marrow biopsy and aspirate a couple weeks ago. The results show MDS-RCMD. My hematologist here says it is a definite diagnosis, but that it seems to be impacting the red cells the most. I have no cytogenic abnormalities; he did all sorts of test including for Trisomy 8, etc. All these were negative.
What is scary now is that treatment is beginning. He wants me to get a blood transfusion later this week. This would be my first, and then beginning in the new year he wants me to begin on injections of red cell and white cell growth factors. He said he was looking at Lenalidomide as a treatment option and we would discuss in the New Year. Of course, I'm totally scared and overwhelmed, but I am not totally surprised. My questions are...
1) I'm young. 31 years old!! And I still have this nagging feeling that this could be AA rather than MDS. Anyone else have that feeling?
2) I'm in London now, and I wonder if anyone out there knows of any great specialists here? I am being seen my someone pretty good it seems, but it would be nice to know if there are other people out there too. For now, I intend to stay here -- I am being seen privately (not on NHS). I can't see if the care would be any different than back home in California, but I wonder if anyone has any insight into that?
At such a young age, I have so much of my life ahead of me, and just want to get this right and defeat it so I can live the life I deserve!
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