My husband was first diagnosed in April 2016. After 16 months on Vidaza, he opted to stop the chemo. He now goes to the Cleveland Clinic( formerly Akron General Medical Center) A few years ago we wrnt to the Cleveland campus for more answers. All they wanted to do was a third bone marrow biopsy, not taking into consideration that he would need guarded platelet transfusions and CHF. He is also a dialysis patient. He has been successfully kept healthy with good care at infusion center for weekly platelets ( they can range from 0 to 5) and if needed, red blood transfusions on another day. His quality if life is better than expected but we would like to know more. We have NEVER been told what type of MDS he has. I asked about whether his bloodwork indicates a migration to the more aggressive AML. I was told it was not. All the best to you in your MDS journey. Praying you can have a bone marrow transplant.
I’m a MDS patient and although I won’t be able to attend I look forward to watching videos of the conference. I wish you a successful conference.
My husband was first diagnosed in April 2016.
After 16 months on Vidaza, he opted to stop the chemo. He now goes to the Cleveland Clinic( formerly Akron General Medical Center)
A few years ago we wrnt to the Cleveland campus for more answers. All they wanted to do was a third bone marrow biopsy, not taking into consideration that he would need guarded platelet transfusions
and CHF. He is also a dialysis patient. He has been successfully kept healthy with good care at infusion center for weekly platelets ( they can range from 0 to 5) and if needed, red blood transfusions on another day. His quality if life is better than expected but we would like to know more. We have NEVER been told what type of MDS he has. I asked about whether his bloodwork indicates a migration to the more aggressive AML. I was told it was not.
All the best to you in your MDS journey. Praying you can have a bone marrow transplant.