← Return to Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

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Profile picture for asarnesejr @asarnesejr

I know I am asking alot of questions, but I don't trust the internet for some of the answers. I've heard that in some cases that low risk MDS does not progress into AML. That seems like a good thing. However, I read that the average life span for someone with low risk MDS is about 3-5 years with low WBC and low Neutrophils, because I will probably die of Pneumonia or some other infection. This is confusing me. Can anyone explain if it's possible to live 10 years with low risk MDS affecting the white blood cells?

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Replies to "I know I am asking alot of questions, but I don't trust the internet for some..."

I don't mind your questions. My WBC are currently 2.3 and Neut .50. I have curtailed gatherings with groups of many people. I watch church from home. I have groceries delivered (truth is I never liked going to the store). I still go to family gatherings. I don't believe most masks work, but if I travel by plane again, I will wear a level 4 mask at the airport. Yes, there are plenty of studies out there about MDS, and yes we can die from infections because we are at higher risk due to our immune system. Approximately 30% of the MDS population will develop AML with the "low risk" community less likely to develop the disease. There is no cure for MDS. AML can be put into remission. At some point, you can make a decision about a Stem Cell Transplant; you can live an MDS free life with a donor's bone marrow. There are treatments that enable people to live 10 years or more with MDS. I was on Revlimid and responding well. I told my family I was on the 10 year plan. One of my Oncologists told me he'd seen people live 10+ years on Revlimid. Monday you will know what type of MDS you have. Treatments for MDS vary by type. Noone knows how long they will live. I am trying to be the best me I can be with whatever time I have left.