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Looking for experiences with the progression of MDS
Blood Cancers & Disorders | Last Active: 21 hours ago | Replies (42)Comment receiving replies
Only options are to keep doing transfusions, as needed, or enter hospice. We would need to meet with Doctors in Rochester to see if there is anything else. It's becoming clear that our local Oncologist does not believe there is anything else we can do.
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Hi Steve. You mentioned your mom already had a 2nd opinion at Mayo-Rochester and they were much more optimistic than her local oncologist. If this were my mom, I’d be practically pushing her out the door to get the consultation at Mayo. From personal experience at Mayo-Rochester, I can tell you the hematology oncology department is outstanding. I would not be here today without them. At 77, your mom doesn’t need to throw in the towel yet!
From my understanding of your mom’s MDS at this point, she is no long producing adequate red blood cells. So she’s becoming transfusion dependent. You mentioned that she also has blast cells in her blood.
Blasts are immature blood cells that develop into specialized cells but they aren’t generally seen in circulating blood. They mature inside the bone marrow to become productive, healthy cells.
When they’re discovered in peripheral blood, simply put, it can mean there’s overproduction of abnormal myeloblasts in the marrow. So many, that overcrowding is pushing them out into circulation. These immature white blood cells are proliferating, mutated, cancerous cells which rapidly multiply with no shut off.
They eventually overtake all of the blood cells; platelets and red blood cells. So unless there is intervention to stop this proliferation of blasts, even with transfusions, blasts will eventually take over her blood supply.
There are treatment options available to help the body increase red blood cells and platelets and meds may help treat or slow the progression of MDS. It would be worth it for your mom (and her family) to at least hear the potential options, to see if they are appropriate for her.
There are some positive stories in this discussion that might be helpful to read through.
AML, age 78, taking Decetabine/ Venetoclax, no transplant:
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
I hope you can encourage your mom to at least look to the future. The meds obviously don’t come without some side effects but they can provide us with the precious gift of time. I’m here anytime as a sounding board…