Newly diagnosed with AML (FTL3 TKD)
Hi I’m Jamie, 39 and I was diagnosed on 5/26/24 with AML mutation FTL3 TKD.
I live in Dubai and can’t really find a lot of information or stories of others with a similar diagnosis to mine. We are still waiting for the BMB to come back as it is sent to the Mayo Clinic with a turnaround of 2 weeks. The general plan is to complete 7/4 and so far I have completed 1 cycle and will start Midostaurin tablets for 14 days soon. If anyone has the same diagnosis, can you please share anything helpful as I’m feeling very scared at the moment.
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No....I don't thinks so
But I will ask thanks
Thank you for taking time to write that sweet and inspiring note .. I am just impatient and want to get well....have a blessed day
My husbands blasts in the blood were at 2% for several months, then went to 16% but have gone down to 9%. His bone marrow biopsy in January showed 8%. He was in a clinical trial using low dose chemo to slow down his MDS until January but was removed from the trial. He is now in hospital as he has no balance and has lost a lot of strength in his legs.
Hello, @daleanddonna. I can’t help but think, Team Dean and Donna…united in this major life challenge you’re both facing with his diagnosis of MDS.
I’m so sorry to hear about the lack of balance and loss of strength Dale’s experiencing. I remember being much the same after being bedridden for 5 weeks during my early treatment for AML. My doctor had me working with the hospital physical therapist to help restore my balance. Chemo, loss of weight, lack of muscle mass and inactivity were the culprits. The exercises helped immensely to regain mobility. I was always physically fit so it was really disconcerting to feel so frail. There were several core building exercises that I was able to do without leaving the bed. Has there been any mention of PT for your husband?
Do you mind sharing a little more information? You mentioned Dale is no longer on the trial drug. Is he on any form of treatment for the MDS now?
Very inspiring and helpful information,given
from experience and from the heart xx