Fatigue and tiredness in MDS

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• August 16, 2019 at 10:08 am #48685
  Haydee Yordan

  Participant

  Hello, I am new in this board, and I want to know about feeling tired and fatigued in MDS patients.
  I have been diagnosed with MDS/MPN RS T .My hemoglobin is still in 9.9 and platelets are high. I have told my oncologists, one in Puerto Rico where I live and the other in a US Cancer Center, and also my internist physician, and the three of them have told me that I should not be feeling tired and fatigued with a 9.9 hemoglobin. The three are suggesting to look for other reasons for my tiredness… and have recommended many studies but all of them have good results.
  I am a big boned frame person, 72, 5,10” height. And Zi insist my body needs more energy.
  What do you suggest? Any information to read?
  Thanks, please help.
  Haydee

  August 16, 2019 at 4:39 pm #48688
  sheri

  Participant

  I live with a RBC around 8.4 and I am exhausted. When I have a transfusion which has been about every 6 months for the last 2 years. It goes up to 9+ and I feel so much better but am still tired. I just don’t get so out of breath like when it was low. I find it hard to catch my breath when I do any exertion.

  August 17, 2019 at 6:35 pm #48694
  Jimmy Greenhut

  Participant

  Haydee, I also have MDS/MPN RS T. I posted several months ago and no one replied. It’s a rare branch of MDS. My Hemo/Onc said the same. I’m 60, with iron overload too. I told him quality of life. My wife can’t understand why I have to rest for an hr or 2 a day. My hemoglobin was @ 10.8 last Dec 2018. And has been going down since. When it got to 9.6 the hemo started me out on 40k units of Procrit. I go every 2wks for blood work. If I’m 10 no shot. I’ve been on it for 3 months now. Took awhile for the levels to get to 10. Nothing above. 4 weeks ago I was 9.7 and need a shot. 2 weeks ago I slipped to 9. It might no be working for me?? This Tue I see him with current blood work in hand. the lowest was 8.9 for me and that was 4 weeks after I started Procrit. No side effects. My Hemo said the FDA was fast tracking a drug named Luspatercept which he said maybe early 2020 it will come to market? Aranesp might be the next option if my level doesn’t rise.Fingers crossed. You have to be your spokesman. Your living with this not the Dr’s… I was given 8yr survival As you know its only 30% odds to transform to leukemia. Please feel free to call me. 239-247-2982. I’m in Florida. And stay positive.:) Best Jimmy

  August 27, 2019 at 11:33 pm #48753
  Chelsea Clark

  Participant

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