I never understood MDS. In MDS, you can have Blasts more than the normal 1 -2% correct? But not greater than 20% that would make it an acute leukemia. So how is MDS not chronic myelocytic leukemia that has less than 20% blasts?
how i have understood is that in leukemia there is monoclonal proliferation of a hematopoetic cell that has undergone a mutation in which its properties are altered and in MDS a mutation in a hematopoetic cell results in production of abnormal/dysplastic cells that are unable to mature. in MDS there is no crazy proliferation of the stem cells, its just that the immature cells are abnormal. correct me if m wrong
My mom is 68 and has aCML. She got 6 courses of azacitidine with many supportuve therapy including blood transfusions of erythrocytes and trombocythes, hydroxyurea etc. Now (after 8 months when disease was diagnosed), physicians said the chemotherapy didn't react and she will no longer receive azacitidine. Now she is receiving hydroxyurea and blood transfusions. She has lekucytosis, trombocythopenia and her hemoglobin isn't recovered automatically by her bone marrow. She receives blood transfusions. Physicians have no idea what to do except for supportive care. Please advise if you can what can we do to make her rest of the life longer and better quality, maybe any variants, any therapy possible? Thank you
Thank you for reaching out to us. There is not a standard of care for aCML but it is important she sees a doctor who specializes in aCML. Here is an article from expert Jason Gotlib, MD about the illness and how he treats patients. ashpublications.org/blood/article/129/7/838/36180/How-I-treat-atypical-chronic-myeloid-leukemia. We would suggest having her medical team contact Dr. Gotlib for a consult, stanfordhealthcare.org/doctors/g/jason-gotlib.html
@@AAMDSIF thank you for kind reply. I've read the article and compared to what treatment she was/is receiving. Unfortunately she is outside USA, so the personal visit is impossible. From comparison of many articles (including the one from dr. Gotlib) I see that doctors do "usual" treatment. I use the word "usual", because no standard treatment exists, unfortunately..
Hi Mike - The diagnosis of MDS is frightening and can feel very lonely. You are not alone and we are here to help. Give us a call 800-747-2820 x140 or send us an email, help@aamds.org. We are here to listen and help.
