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Deletion 5Q MDS Treatment

Tagged: Treatment of Deletion 5Q MDS

This topic has 2 replies, 3 voices, and was last updated 1 year, 6 months ago by Satoshi Kojima.

Viewing 3 posts - 1 through 3 (of 3 total)

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October 13, 2022 at 11:14 am #58739

ROBERT HOGAN
Participant

Has anyone heard of any investigative medications being worked on that may possibly help bone marrow to make more blood cells. I keep watching but have seen nothing recently for treating this strain of MDS other than transfusions.

October 14, 2022 at 5:32 pm #58746

lisab
Participant

Hi Robert
I’m a del5q patient. This is my 3rd anniversary. I’m on lenalidimid with helps create blood cells. Been transfusion free for 3years in November. I also take folic acid and b12 to help. When diagnosed my hemoglobin was 35 and now it is 137 to 141. I’ve had very few side effects on this medication. Hope this helps.

October 14, 2022 at 8:06 pm #58747

Satoshi Kojima
Participant

Hi Robert,

I’m del5q, with ASXL1,PPM1D and TET2 mutations. I’m currently watch and wait and it has been 1 year since diagnosis. Hemoglobin down to 9.4. Doc says that when HB is down to 9 he will start me on Procrit injections to help with the red blood cells. Procrit is a man made protein to help produce more red blood cells. Doc also advised that if Procrit not working I would go on either lenalidomide or vidaza.

Hope this helps and good luck with your treatment
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