[reggie lama]

Hi Rose,my dad who is 68 years of age was diagnosed with MDS RAEB II with 20Q deletion and RUNX1,U2AF1 and KRAS Gene Mutations in Late August of 2018 and started of on Azacitidine and weekly Platelet transfusions.He had three cycles of Azacitidine and underwent a RIC allogenic HSCT with the donor(his younger sister)being a 10/10 match on the 1st of December 2018.He is on his 151st day post the stem cell transplant and doing good so far;He had a 100 % Donor Cell engraftment on the 87th day and the same was constant on the 123rd day and the next blood sample for a Chimerism report is to be given next week.He had a lot of tummy problems/GVHD(gas,bloating, constipation and three episodes of loose stools in between) till the 3rd month post the transplant but is comparatively better now.He has a healthy appetite (also helped by the Steroids/Dexamethasone) and has weekly reviews with his Hematologist/Transplant Doctor and is waiting to be taken off the Dexa so that we can finally go home(We do not have proper medical infrastructure and support back home for my father and are thus staying close to the Transplant Hospital)with “Normal Dexa free blood parameters”..
He has become Dexamethasone dependent as three episodes of weaning him off of Dexamethasone has resulted in him having lowered platelet and hb levels and the earlier mentioned three episodes of loose stools.
HSCT is tough on the Patient and the family but we did go ahead with the HSCT as my dad was given 6 months to live when initially diagnosed by his first hematologist in August of 2018.
Good luck to you all..

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