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High Risk Myelodysplastic Syndrome: What to Expect?
Blood Cancers & Disorders | Last Active: Sep 6 11:33am | Replies (30)Comment receiving replies
Good morning, rjperk633 (@rjperk633)
Thank you, thank you for all this information! I went over it all with my partner. Your messages have helped her refine many of her remaining questions. She's waiting right now for a call back from her hematologist's nurse. This is a whole new world for her, as you might imagine––as it is for me, too. As she'll not have her first week of chemo until next week, she and I are both trying to get a sense of what will be expected of us (when to be where? for how long? what to expect? etc.).
You mention blasts. She and I are trying to figure out just how much of the question of blasts impacts her particular MDS situation. The word, blasts, has been mentioned in passing, but not with enough explanation for us to be able to place the concept among all the other new names and numbers we're hearing. We've much to learn!
I did take my partner for a blood draw yesterday. Her numbers were low (hardly unexpected). We thought perhaps her doctor would phone when he saw the numbers and urge my partner to get yet another unit of blood, even before she begins her chemo; his nurse did phone, but told us, although the lab numbers might otherwise warrant a blood transfusion, the doctor told us only to watch for any new, alarming symptoms (bleeding); otherwise, continue to contend with the extreme fatigue until chemo begins next Monday.
Again, a MILLION THANKS from both of us for your super helpful messages!
Ray (@ray666)
Replies to "Good morning, rjperk633 (@rjperk633) Thank you, thank you for all this information! I went over it..."
My husband had 19% blast on his bone marrow biopsy and they said if it would be leukemia 20%. He was 68 yrs old and saw hematologist on a Tuesday and started chemo that Thursday. Said he was one foot shy of leukemia. He is now 2 yrs post bone marrow transplant. We were fortunate enough to be able to get the transplant. It was a touch and go situation since the chemo took its tole on him. A highly active person. But with the help of the physical therapist he was able to work back into having it. With whatever you are able to do please check into having some physical therapy to help you just maintain your strength and perhaps even some mental support. It all works together. Prayers .
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I can definitely relate to your current predicament… I wanted to learn as much as possible as quick as possible and this site was very helpful…
I did have a reference point. The mother of a friend was diagnosed right before with my mom, but diagnosed at CML.. One treatment put her in hospital and after a week she stopped treatment and was deceased a week later…. That got our attention that things could go south rather quickly and my mom knew she wanted not part of the treatment route…. That was a reality check about quality vs quantity..
Remember the other person had converted from MDS to AML… the Vidaza was the same treatment along with an oral pill of which I never learned the name.
Sometimes you just have to let the affected person go with what’s in their gut feeling…