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High Risk Myelodysplastic Syndrome: What to Expect?

Blood Cancers & Disorders | Last Active: Sep 6 11:33am | Replies (30)
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Hello!

Thank you for your message, rjperk633 (@rjperk633). I relayed your words to my partner. She'll begin her chemo next Monday: one week of Vidaza, then three weeks off, then repeat. My partner has asked what level of MDS your mother is dealing with (my partner's is High), and whether your mother has had to receive occasional blood transfusions in addition to her chemo.

Again, thank you for your note! I wish you and your mother the very best!
Ray (@ray666)

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Replies to "Hello! Thank you for your message, rjperk633 (@rjperk633). I relayed your words to my partner. She'll..."
rjperk633 | @rjperk633 | Sep 2 8:17pm

I do not recall anyone describing her risk factor…her last visit shows diagnosis is MDS- IB2…. Not sure if that helps you to compare..

Mom has thus far not needed any transfusions and her bone biopsy was November 2024.

She has been anemic since March 2023 when she was hospitalized for Covid and Afib. We found this out when I gathered all records before going to see the oncologist.. We were not told to follow up with anyone for the anemia; I believe it was assumed she was anemic from the Covid bout that lasted about two weeks. Someone dropped the ball but we see this as a blessing is disguise…. She didn’t have the mental burden of a diagnosis…

She did bounce back but within a year we were headed to oncology for the eventual diagnosis after the biopsy. She had a two week period of extreme fatigue previous to seeking medical care and eventually oncology.
She was on the sofa a lot; this is very abnormal for Mom.

Her last blood work test was slightly below the previous one 3 months before… and she is having more fatigue but nothing major. She sees oncologist again in October just to recheck blood since she has opted for no treatment. Her fatigue levels will dictate if she needs an appointment sooner…..

Hope this helps you sort thru things….

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