MDS is a bone marrow failure disorder
MDS is a blood cancer
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Viewing 14 posts - 1 through 14 (of 14 total)
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  • in reply to: New to MDS, any answers/stories greatly appreciated #58225
    Kevin Dugan
    Participant

    The 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.

    in reply to: 52 years old MDS q5 deletion Anemia and RA #58175
    Kevin Dugan
    Participant

    There is no end date. Lots of good meds your dr can try. Revlimid really good for me. Get a good doc.

    in reply to: Starting Revlimid #57391
    Kevin Dugan
    Participant

    Have had great results with revlimid. No transfusions over 2 yrs. Hgb 11.9 last week.

    in reply to: Loss of gripping in hands #57390
    Kevin Dugan
    Participant

    I think that must be coming from something else. Get it evaluated.

    in reply to: Between a Rock and a hard place! #56756
    Kevin Dugan
    Participant

    I have had good results with revlimad/retuximab.

    in reply to: Newly Diagnosed with MDS #54901
    Kevin Dugan
    Participant

    Judging 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.

    in reply to: Exercise and Hemoglobin Counts #54702
    Kevin Dugan
    Participant

    This 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.

    in reply to: MDS High Risk #54563
    Kevin Dugan
    Participant

    NO I have not, but will be thinking of you and praying all goes well. Best wishes, Kevin

    in reply to: new member, long story #53904
    Kevin Dugan
    Participant

    I 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.

    in reply to: Tiredness #53866
    Kevin Dugan
    Participant

    I 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.

    in reply to: Revlimid beginning to fail? #53854
    Kevin Dugan
    Participant

    Yes I am. Revlimad did not help me. I developed AIHA. Then retuximab brought my levels back up above 11. No transfusions in over a year.

    in reply to: Revlimid beginning to fail? #53849
    Kevin Dugan
    Participant

    I have had very good results with retuximab with no side effects. Ask your doctor about it.

    in reply to: ADVICE REQUESTED #53800
    Kevin Dugan
    Participant

    I have had great success with infusions of rituximab.  Previously had several infusions.  Procrit did not help.  RBC btw 11-13 since getting the infusions. No more transfusions. My activity level is back to normal.   No side effects.  8.2 RBC is not a good way to live.  Ask your doctor. 

    in reply to: Not given much info #53084
    Kevin Dugan
    Participant

    Before jumping ship, I would make sure doctor knows what you need. Get copies of all tests, Put your questions in written form so you won’t forget. Then insist that you speak with the dr. at your next appt. If they won’t answer your questions then look elsewhere.

Viewing 14 posts - 1 through 14 (of 14 total)

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