Anyone living with MDS Extended diagnosis experience?

Posted by revbobcoulson @revbobcoulson, 6 days ago

Age 70, diagnosed with MDS Extended. Had NHL 2006 chemo and in 2008 chemo then auto transplant and good to go until Thanksgiving 2024 low blood red, white, and platelets. Just fatigue and winded at times but went and bone marrow biopsy says MDS Extended. So referred to ONeal Comprehensive Cancer Center in Birmingham a teaching hospital with a one hour commute for treatment. Any experiences or tips about MDS Extended or progressing to ALS?

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Lori, Volunteer Mentor | @loribmt | 5 days ago

Hi @revbobcoulson I admit MDS Extended isn’t a term I’ve heard before and not sure what it means. There is an Extended FISH panel for classifying the five risk groups of MDS.
Good questions for your hematologist oncologist would be:
What MDS Extended means and what is your risk potential for developing AML. (Acute myeloid leukemia). Some subtypes have a lower risk for progressing to a more serious disease.

What type of treatment are you receiving for the MDS?

revbobcoulson | @revbobcoulson | 5 days ago

No tx yet. Fish analysis MDs extended: issues: Del5q, trisomy 8 and 19 all detected abnormal.

donnamae90 | @donnamae90 | 19 hours ago

Have had MDS for a couple of years with no symptoms. Lately have about a dozen symptoms. The worst being tired and short oh breath when walking a slight hill. Will see Doc tomorrow & ask if transfusions are the way to go.
Donna90

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