MDS with weight loss, dizziness & weakness

Posted by ron79mds @ron79mds, Feb 18 10:00pm

I have been diagnosed with MDS. It started with weight loss about 4 years ago and no other symptoms. Eventually, I gained some of the back but my oncologist ( following up after mylung cancer surgery; did not need chemo or radiation therapy) suggested a bone marrow biopsy. The biopsy showed some abnormal chromosomes, but I still had no symptoms. About 15 months ago, I started to feel fatigued. My erythrocyte count, hemoglobin and hematocrit were a little below normal . I was given Aranesp and sometimes Fe infusions. For January
and February my RBC were 3.89 and 3.99; my Hemoglobin was 11.4 and 11.5 and my Hematocrit was 37.4 and 39.4. My Platelets and WBC
Fall within the normal range. I also have a good appetite. I did not get treatment in Dec. and Jan because Hemoglobin was over 10.My problem is I am continuing to lose weight. I drink 2 Kate Farm shakes (455 calories each ) daily in addition to meals . About 10 days ago I would wake up ok, but then about 90 minutes later I start to feel dizzy, I feel weak in my arms and legs, my heart rate increases as does my shortness of breath. It can last a few hours, disappear and then come back, I usually feel better at night. Has anyone had anything like what I am describing? I really would like to hear from you. I see my oncologist on Monday. Thank you.

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shmerdloff | @shmerdloff | Feb 19 8:29am

I too have recently diagnosed MDS in "Watch and wait" mode.
It's tp53, which does not have an optimistic prognosis. My onc says my bloods (lower than I would like) are good for now.
I have many of the daily symptoms you talk about, except weight loss. I cannot say definitely that the symptoms are connected to MDS. There are off days, and brilliant days.
At 78, it just might be age.
In short, separate cause (MDS is causing your symptoms) from coincidence (there is stuff going on having nothing to do with MDS) you just happen to have both.

justmeb5 | @justmeb5 | Feb 20 4:45pm

I find all you say very interesting. It was after lung cancer surgery, followed up with no chemo or radiation, that my blood levels went down. After a bone marrow test, I was diagnosed with MDS. First, I had iron infusions and B12 shots. I, too, am 78. We have tried Reblozyl and are now trying Inqovi. As the blood levels drop, I experience dizziness and a great lack of energy. We hope that the Inqovi will kick in and build red and white cells. We wish you well on your journey. Thank you for sharing.

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