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Kevin Dugan
ParticipantDonna, i am surprised by what your dr.said. i have had slow MDS since 2019 and have developed 4 other chronic conditions. Fortunately, my Oncologist keeps an eye on everything and refers me to other specialists as needed. Underlying all this is my immune system is out of whack. MDS and PF are associated with possible immune disorders. The doc should check his immune system functioning.
ParticipantOh yes! I get everything important done in morning. 8.5 will drag you down.
ParticipantI have been treated with rituxin for 4 years. It has kept me transfusion free.
ParticipantHow is your iron?
ParticipantIt took a year to figure out what worked for me. In that year I had 5 transfusions, developed AIHA, and was in critical care unit. In last 3 yrs my hgb has been above 11, and no need for transfusions or hospital. I have 1 infusion of rituximab every 2 months.
ParticipantThe 5yr estimate is just a guess. It is slow moving mds so there is no certainty as to how it might progress. I have had same for 3 years with some transfusions and infusions. I am batter than ever. New biologics are changing our chances. So know that she will need to rest frequently when hgb drops and will need help around the house. Walk sleep and eat good.
ParticipantThere is no end date. Lots of good meds your dr can try. Revlimid really good for me. Get a good doc.
ParticipantHave had great results with revlimid. No transfusions over 2 yrs. Hgb 11.9 last week.
ParticipantI think that must be coming from something else. Get it evaluated.
ParticipantI have had good results with revlimad/retuximab.
ParticipantJudging by your activity level your HGB is not low. What exactly is the indicator for a transplant. I would go slow as long as symptoms are minimal.
ParticipantThis is a good question to which I have had no success in getting an answer. I think it might not effect the HBG count but help with symptoms. If you can bike and run with hgb at 11.9, that is good. I do weights and walk, but don’t run any longer.
ParticipantNO I have not, but will be thinking of you and praying all goes well. Best wishes, Kevin
ParticipantI think you should get a hematologist who has some expertise with MDS. The fact that his doctor does not check his blood levels at each visit indicates that he may not be a specialist.
ParticipantI don’t think there is any easy answer to this. Just rest when you are tired, sleep as much as you can, restrict activities, eat a good diet. You can’t do what you use to be able to do, but when you feel up to it, take a walk, get fresh air. You have to put other things aside for now, your focus has to be on yourself.
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