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Low Platelets with Myelodysplastic Syndrome (MDS)

Blood Cancers & Disorders | Last Active: Jan 24, 2023 | Replies (39)
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@shels93

Lori-thank you so much for the fast reply. He has not been given anything (specifically Neulasta per your question), or anything else for that matter. I actually tonight wrote down to ask his oncologist about why this is...I had read that others have been taking Promata /Prednisone/Rituxan for low platelets but he has been prescribed none of that. They did not give him any antibiotics today (or before). They did take two vials of blood (that tbh looked like airplane bottles of alcohol-a moment of levity) and were sending those out for testing. They also had him sign off on getting a transfusion tonight if levels continue to be low. Kicker is we're supposed to see his specialist on Tuesday (he is the MDS Specialist and would handle the BMT) but now we're wondering if that will have to be rescheduled (after waiting 2 months from our initial appointment with him). We were hoping to get perspective on how the doctor thinks he's responding at that appointment. He's been really tired, that is the biggest symptom. He also gets really winded going up stairs. His WBC's were 2.59 on 9-16, 3.57 on 10-25, 4.24 on 10-27, 3.42 on 11-1, 2.46 on 11-8, 2.49 on 11-11, 3.64 on 11-16, 4.45 on 11-18, 5.06 on 11-21, 3.42 on 11-29, 3.33 again on 11-29, and 3.17 on 12-1.

Thank you again so much for this.

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Replies to "Lori-thank you so much for the fast reply. He has not been given anything (specifically Neulasta..."
Lori, Volunteer Mentor | @loribmt | Dec 5, 2022

Good morning, @shels93 Oh gosh, I hope your husband’s appointment with the specialist doesn’t have to be rescheduled. Especially after waiting for so long! Fingers crossed that his fever breaks and he can be released from the hospital in time for his appointment!

As far as meds, comparing what he’s being given with what other MDS patients are taking is a slippery slope that can lead to doubt. Each person has their own unique set of circumstances and what’s advisable to one, may not be the best fit for another. I saw that myself when I was being treated for AML. There was someone in the next room, (we became chemo buddies and friends) but he was on something completely different than I was and we had the same diagnosis…but, different bodies/different circumstances.
Underlying health conditions or comorbidities (having other health conditions) can direct the treatment plans.
But you are doing the right thing with talking to his doctor and asking questions.

My heart goes out to your husband. I can so empathize with that feeling of exhaustion and being winded. With his blood numbers down, those are, unfortunately, expected side effects. Lower RBC will have him feeling winded and fatigued because there’s not as much oxygen being circulated through his body.

Looking at his WBC for the past couple of months, usually, RBC’s are up as well. Was he feeling more energetic between 11-16 and 11-20?

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