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Hello All - Just an update. Life has been like a roller coaster since I last posted. We completed the first round of the clinical trial and will find out how or if it affected the MDS/leukemia at all in 2 weeks.
The big change - even though we thought we were approved for the SCT, apparently we weren't really. They wanted a PET scan before they gave their final blessing. Unfortunately that scan showed that my husbands squamous cell cancer was back in the lymph nodes and has now moved into his lung. So we have been removed from the SCT treatment and the clinical trial - azacidine (Vidaza) and remlivid.
The only options they are giving us at this time are palliative (hospice) or going back and forth treating the squamous then the leukemia. As they consider both incurable, they are not very encouraging.
As his MDS has now moved back to leukemia, along with the squamous, I should probably move more toward the leukemia discussion boards, Just wanted to give you all an update. Everyone on this site has been so supportive and quick to share. I have enjoyed it very much and I thank you all! I can only hope that his leukemia drops a back down to MDS once again.
I was so sad not to have had a chance to say a final word to Birgitta, who was such a inspiration.
Peachy
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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