End stage?

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• January 24, 2019 at 9:44 am #44990
  Laura J

  Participant

  My father was diagnosed with MDS with the P53 mutation about 5 weeks ago. He had the first – 10 day- dose of decitabine starting on January 7th. On January 18th we consulted with Dana-Farber for a possible bone marrow transplant but he is not a candidate. His once a week blood transfusion quickly turned into receiving blood and platelets ever other day, alternate days. He is being treated for 2 different infections. His counts are very low (WBC 160, neutrophils 20 and platelets 8), even after receiving the transfusions. From experience, does this sound like the end stage of a short battle? How long can one survive with receiving blood everyday? This all happened so fast and I am having a hard time processing everything.

  January 24, 2019 at 10:51 pm #44992
  Kathy Lynch

  Participant

  Are you anywhere near a MDS center? You can also look in the sight for any doctors that specialize in MDS to talk about other meds.
  Sending you and your dad love and prayers!

  January 26, 2019 at 9:09 pm #45000
  Donna

  Participant

  Laura,
  You are at the best place in our area. There are several doctors at Dana Farber that are quite specialized in MDS. I certainly hope your father’s numbers improve. I am going to start Decitabine soon but my plan is 5 days in a row every month, not 10 days. You can go for another opinion right at Dana if you want, or book him for another opinion at Mass General Hospital. Both are Centers of Excellence for MDS.
  Donna

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