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Newly diagnosed MDS-IB2 and vidaza
Mom is 87, newly diagnosed MDS… initially she agreed to Vidaza but now she is looking for first hand information on its side effects.. She is happy to let this run its course but I would like her to take the vidaza injections until it either proves to not be of help to her or the side effects to be unpleasant….so at least one round of 5 injections.
She is having zero issues like fatigue or whatnot and has zero complaints. Her anemia was discovered after having afib post covid. Yesterday’s bloodwork showed platelets are 47, RBC 4.2, hemoglobin 12.3, hct 37.7, wbc 3.5
Bone marrow testing is 10% blasts
Molecular eval found mutations at DNMT3A, PHF6, and TET2.
Trying to learn as much as I can as quick as I can to help her with her decision-making.
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Your mom’s story is nothing short of remarkable. Wow! I’m so happy to hear she’s stable and feeling so well. I can’t help but agree with you about the treatments in her case, though we’ll never really know. Anyway, you can’t argue with her decision on this! The fact that she has blood work every 3-4 months instead of monthly or every two weeks, is an indication her doctors are pretty comfortable with this not progressing quickly at this time. Can’t beat that!
Love her positive attitude too! Thanks for letting me know!
One note, with her low platelet level, now’s not the time to pick up a hobby like knife juggling. 😉
If you mom’s platelet level becomes critically low would she consider a platelet infusion if needed?
Knife juggling…. Hilarious
She hasn’t got a sharp knife in her house…. Never has….
Yes I do believe she would take platelets… we’ve had the discussion…she understands that she would be feeling pretty crappy at that point and would likely welcome it…
I’m a numbers person so I’m a lil perturbed that doc didn’t order cbc with differential….
Thanks for being a wonderful sounding board for me…. Hope to update you again in a couple months about her continuing stability!!!!
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1 ReactionI’m actually a little surprised there wasn’t a CBC with differential with your mom, too. Usually, when people have been diagnosed with a blood cancer, white blood cell differential ('diff'), which looks at the numbers of the different types of white blood cells is added. But a CBC still gives the important blood count information and if she’s declining treatment it may not be necessary.
From my experience, if there was an increase of blast cells in your mom’s blood they can be detected with a CBC. And generally, as the blast cells proliferate, they tend to crowd out healthy cells so blood results reflect that change with a decrease in hemoglobin.
She’s doing great so just go with the flow! ☺️ Looking forward to your next update! But feel free to pop in any time!