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rft1111Participant
Well, 65 isn’t old. I’ll be that in October. The low hemoglobin could be caused by bleeding from long-term aspirin usage. I have to wonder about the hematologist. I was diagnosed in January, 2016 with MDS shortly after a stay in the hospital because of extremely low hemoglobin numbers. I wasn’t in good health then and could be considered unfit. I really wonder why your doctor rules out chemo right off the bat. There are drugs that may help boost hemoglobin counts that can be used as a first step. Blood transfusion can help too. I assume your father no longer takes aspirin, if he his truly bleeding. My cardiologist kept me on aspirin as long as my platelets stayed about 40 and my hemoglobin was ranging from high 6’s to low 7’s. I went through a regimen of Aranesp injections to boost red cells. It didn’t work. I went through 6 cycles of chemo using Vidaza. It didn’t work and neither did Revlimid or Decitibine. I have been getting transfusions seemingly forever now. I am waiting for a stem cell transplant but have had infection issues that have delayed that. Last December, when deciding that what my hematologist was doing wast working, I went to a tertiary specialist who focuses on the bone marrow and transplants. She told me that I might not see the end of this year because of the progression of my disease.
To me it seems your hematologist has given up and you need to get your father to a specialist in this disease. I wouldn’t give up yet. The longer it progresses the worse it could get.
rft1111ParticipantI don’t see how a “true” MDS diagnosis can be made without a bone marrow biopsy to confirm it. How old is your dad? That could make a difference in the doctor’s suggestion. I say suggestion because that is what it is. Do not be afraid to question the doctors at every step.
rft1111ParticipantI have the trisomy 8 as well. I’m not sure how much it really matters with regards to treatment. It seems that you are being encouraged to go a transplant route without even trying anything else. At your age, I might do that. This site is useful but confusing. MDS seems to have such a wide variety of symptoms in people and treatments vary so much, it is hard to get a clear idea of what is happening. Good luck which every way you decide. Use the search facility on this board and eventually you may stumble on something that approximates your “type” of issues with MDS.
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