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.
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..
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
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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.
Roald Dahl died from MDS.
Wow, I finally found the pathophysiology of MDS to do my nursing school work. Thanks so much!
I have MDS and it is killing me. It's likened to cancer of the bone marrow(not leukemia), and is incurable.
I'm so sorry. My sister has this also. She is 20. I feel so bad for her and you. I'm truly sorry. Have faith in the lord.
Its curable by allogenic stem cell transplantation.
Hey are you okay rn? 😭
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..
Good Video
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?
AML may also arise from pre-existing MDS.
ruclips.net/video/7j6HcztlLdw/видео.html
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
It's OK for French merci
Great Video
very nice . make a detailed video
There's more information with this recently recorded webinar: www.pathlms.com/aamdsif/courses/6969