Anyone living with MDS Extended diagnosis experience?

Posted by revbobcoulson @revbobcoulson, Jan 2 5:11am

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 | Jan 2 9:10am

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 | Jan 2 11:02am

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

donnamae90 | @donnamae90 | Jan 7 9:44am

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

5qdeletion | @5qdeletion | 3 days ago

In reply to @revbobcoulson "No tx yet. Fish analysis MDs extended: issues: Del5q, trisomy 8 and 19 all detected abnormal." + (show)

No idea either what "extended" means... but my husband also has MDS 5q deletion, diagnosed late 2017.

We are told by his hematologist and oncologist that 5q is low risk for developing AML, even though one Flow Cytometry revealed AML markers. The oncologist had us talk to his end of life specialist on the day he told us about the AML markers. That was a year ago, and the next Flow Cytometry had fewer markers.

Also, CBCs on the same day at different blood draws show some differences that appear to be more than reading errors. We've learned to follow everything closely from day to day.

Wondering if your hematologist also reports that 5q is low risk for AML.

Lori, Volunteer Mentor | @loribmt | 3 days ago

In reply to @donnamae90 "Have had MDS for a couple of years with no symptoms. Lately have about a dozen..." + (show)

Hi Donna, Just wanted to check in after your doctor’s appointment. You were concerned about worsening symptoms with fatigue and shortness of breath. Did your blood work show a change in your health?

janetlen | @janetlen | 3 days ago

@revbobcoulson
There is an MDS extended fish panel.

Clinical Significancee
The MDS Extended FISH Panel accommodates the 2012 Revised IPSS (IPSS-R) classification of five cytogenetic risk groups: very good, good, intermediate, poor, and very poor. (https://neogenomics.com/test-menu/mds-extended-fish-panel)
It does look like you have del 5q. Have you seen your Dr. again?

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