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Living with MDS

Blood Cancers & Disorders | Last Active: May 17 5:49am | Replies (68)

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Hi @momz I wasn’t diagnosed with MDS prior having AML. I’d had a complete physical including CBC, 7 months earlier and there was no indication of anything amiss.
In fact I really had no symptoms of my acute myeloid leukemia until about three weeks before I was gravely ill.

The day after my 65th birthday I developed a ‘tickle’ in my chest that caused a cough. For 3 weeks in a row I saw my doctor who insisted it was bronchitis though I’d not been ill previously. The cough, fatigue and sustained fever of 102 went on for those 3 weeks. No blood work was done…just dismissed to go home, telling me I’ll get better despite telling her how awful I felt…that this didn’t feel like bronchitis.

The last week I could barely function, the fatigue was debilitating. My skin looked lifeless, no color. Never in my life have I felt so horribly ill. My husband called my friend’s husband who is a doctor. He rushed over and took one look at me…could see I was seriously anemic and heard pneumonia in my chest. He told my husband what tests needed to be run. So the next morning my husband carried me into my doctor’s office. She still insisted I would be fine…my husband insisted on blood work…there was actually an argument. Finally my doctor relented and sent me to the lab…in a wheel chair because I could no longer walk.
Later that afternoon my doctor called me at home saying that I needed to pack an overnight bag and report to the hospital for a blood transfusion. I was so out of it but had the presence of mind to ask why someone with pneumonia needed a transfusion…to which she replied “Well, apparently you have leukemia.”
I was admitted that night and was in the hospital for 5 weeks the first time. Had my doctor bothered with blood work initially, it wouldn’t have changed the diagnosis but I would have gotten treatment much sooner. My chemo nurse said without the transfusion I wouldn’t have made it to the next morning.

My blood work, DNA test and bone marrow biopsy showed I had AML with 3 acquired mutations which put me in a high risk category for relapse without a bone marrow transplant. So I went through months of chemo first, then had the transplant. It’s been very successful and I am now back to being in the peak of health, walking 5-7 miles daily and 98% back to normal activities. If it wasn’t for the threat of Covid I’d be at 100%.

In retrospect I may have had some symptoms that I missed. I dropped 10 pounds in less than a month but I attributed that to eating less and getting a lot of exercise while we were in Florida. So I didn’t think anything of it except pleased to lose weight! 😅 And I had a small sore on my leg that didn’t heal very well.

Not every case of MDS will develop into AML. Some types of MDS have a higher risk levels than others. Are you working with a hematologist oncologist?

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Replies to "Hi @momz I wasn’t diagnosed with MDS prior having AML. I’d had a complete physical including..."

Wow how brave of your husband and such incredible strength you have to be where you are today!! Thank You so kindly for sharing. Yes I see a hemo/ono every 6 months. I had a routine physical and blood work done in 2017 that showed low wbc and it continued.
My MD sent me to hemo/ono I had ovarian cancer at 29 so just to be proactive. Ended up having a BMP in 2/2021 that showed rearranged Clonal T cells and I have been asking my hemo/ ono what it is and finally last month he said MDS but don’t worry and if it progresses I will need treatment. Now my head is spinning. I need some time to process and try to not dwell! I am hopeful and will get there.
Thank You again for sharing and being so caring.