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Old Fri Mar 15, 2019, 04:56 PM
David T David T is offline
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Join Date: Oct 2018
Location: London, England
Posts: 16
Thanks everybody

Thank you all again for your good wishes and messages of support.

I am still in Hammersmith Hospital recovering from my SCT, which was exactly three weeks ago.

I have found this four weeks tough. but having already spent three months in hospital and been through two cycles of chemo, I was already quite run down. They called it reduced intensity conditioning, so I would hate to think what the full monty is like!!!

The dreaded mucositis caught up with me, but I managed to avoid an NG tube with the help of lots of morphine. It has passed now, but I continue to experience multiple side effects from the cyclosporin and magnesium infusions.

The good news is that engraftment has taken place and my counts are rising slowly, with the occasional fall back that gets me worried. The doctors seem happy with my progress and I look set to go home next week, if I can avoid infections or GVHD. I then have a big bag of medication and many months as an outpatient to look forward to, but at last I feel that I have turned a corner and may be free from blood and platelet transfusions.

It hasn't been easy, but I still count myself as very lucky. Along this journey I have met many people in a much worse place than me. Many of them were on palliative care. If the transplant keeps working and I haven't relapsed after two years, I will try to thank my wonderful donor in person.

I will continue to keep you posted.

David
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.
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