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Did anyone get better after diagnosis?

Home forums Patient Message Board Did anyone get better after diagnosis?

This topic contains 7 replies, has 6 voices, and was last updated by  Janice Sheppard 2 months, 3 weeks ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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    Diane Lafontaine

    Diagnosed Aug 2017. Received 5 blood transfusions. Last transfusion was Sept 13, 2017. Since then all blood work got better. Almost everything is back in to the normal range. Did this happen to anyone else?


    Meredith Smithson

    Hi Diane:
    Speaking on behalf of my husband: he was diagnosed with RCMD slightly less than a year ago. The BMB was never remarkable…he had mild dysplasia. The hematologist thought that he had lymphoma but neither the BMB nor the lymph node biopsy was positive. For a year he has had absolute leukopenia with a white cell count around 1.0 and ANC 100-200. He was feeling poorly in August/Sept. but has since improved. He also has a-fib and some more circulatory problems which has added to the mix and is unresolved. In spite of the low blood counts he is doing better than he was 6 months ago….is relatively active, appetite increased and everything is stable. He has only slight anemia, and his platelets are about 92, and have been 35-100 all year. I am amazed and grateful that his condition is improved. It seems that we just never know, and take things one day at a time.
    Wishing you all the best, Meredith


    Allan Romriell

    I was diagnosed June 2017 with MDS_RARS. Platelets 75, hemoglobin 11 white count slightly low. Have had blood work done every 3 months with counts fairly stable but bouncing around a bit. In 2018 my counts were on a slight downhill slide all year with hemoglobin at 11.1, white count slightly low, platelets between 130 and 137. In October all counts were up, hemoglobin 12, white count in the mid 6’s red cells 3.91 and platelets 157. This was the best overall counts I have had since this all started. Also my bilirubin had been creeping up to high range and it dropped back to normal range. It will be interesting to see if this holds at my next appt in Feb. So, I can’t say I am getting better but in October at least I was better than I had been since diagnosis. Wishing you and all other the best, be nice if we could all just get better and stay that way.


    Diane Lafontaine

    Thank you Meredith and Allan for replying. I was diagnosed at MDS int-2 so I was high risk. They recommended Vidaza. I refused that treatment. I opted for no treatments except blood transfusion if/when needed. Now i have been downgraded to low risk. Hemoglobin is at 14, platelets 181, WBC 3.2 and RBC 3.99. Numbers are almost back to normal. Has anyone with MDS ever gone back to normal range blood work without a stem cell transplant? Just wondering if I was misdiagnosed.


    Donna Clabaugh

    Diane, is it possible to seek a second opinion?


    Diane Lafontaine

    I had 8 bone marrow biopsies done by 3 different specialist. Only one gave the possible MDS diagnosis. Since I have been getting better I will be requesting another biopsy in the new year.


    Muriel Miller

    I wonder if you had some sort of toxin in your system that cleared up with blood transfusion. It is very interesting indeed and I wish you the very best in the new year.


    Janice Sheppard

    My BMB states reactive process and not MDS (doesn’t meet WHO diagnostic criteria). last neutrophil count was 0.43. I would love it if the offending agent could be eliminated and recover, but they have no idea what is causing this. I’m going to Dana Farber next month for a second opinion.

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