Stem Cell Transplant Off the Table

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• July 21, 2016 at 8:15 pm #30201
  Ann Kilter

  Participant

  We went to U of M to start evaluation for a stem cell transplant. At this point, my husband is not a good candidate due to weight loss, preexisting gut issues, and cardiomyopathy. Then there are the logistics. We would have to move to the center, rent an apartment and arrange 24-hour care. Leave my job. Leave my daughter. I am not free to do this. Since it is unlikely that my husband would have a good or reasonable outcome, it is not a choice we have to make at this time. He will be 65 in a few months. He currently has RAEB-1 with thrombocytosis. Dysplasia in all three cell lines. He started his second round of Vidaza this week. Perhaps he will be strong enough to try for BMT at our local hospital (Spectrum in Grand Rapids) in the late fall when he will be on Medicare. But it’s not a Center of Excellence yet. We both worry that the cure will be worse than the disease.

  July 22, 2016 at 4:59 am #30202
  keller

  Participant

  I am from France. In 2011 I have been diagnose a low risk MDS. Until last january, things did not change much ,just a low decay in the numbers of red blood, white blood cells and platelets.
  In early january I had my first RC transfusion. Then everything stated to accelerate and the doctors started to speak about hematopoietic stem cells transplant… I was so afraid at first that I did not know if I aws strong enough to handle it.
  Doctors convainced me that it was the only to expect a cure…
  They started to fine a donnor compatible. As it took some time I had a first round of vidaza.
  then came the good news: I had a donnor 100% compatible.
  I entered the hospital on june 15th, and got the transplant on june 24th. Everything went very well, so well taht I left the hospital on july 13th!
  I am now at home, recovering. Of course I visit the day hospital twice a week. Yesterday, I had an important visit as it was D + 30 after the transplant. I had a myelogram done.
  My family suggested that I should write a small blog to help me during these difficults times. Here is the address:
  https://ppmhk.wordpress.com (it is in English).
  All the best.

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