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MDS/MPN Unclassified

Home forums Patient Message Board MDS/MPN Unclassified

This topic contains 8 replies, has 7 voices, and was last updated by  Ann Jones 2 months, 3 weeks ago.

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • #34727

    Tracey BROWN
    Participant

    Hi, I am newly diagnosed with MDS/MPN U. I was wondering if there
    is anyone else with with this disorder.
    It is difficult to find any information in regards to outcome and what to
    expect along this journey.
    I do not know of any other people with this particular Bone Marrow Disorder.
    There is no support groups for this overlap disease and I feel like I am
    on my own. Even my GP is learning as we go along.

    #34728

    debbie stern
    Participant

    Hi Tracey,
    I also was diagnosed with MDS/MPN U in Febrary. I would be happy to talk to you. Please write me at deblevstern@gmail.com. and tell me more and we can share more. Who is your oncologist that diagnosed you and where is he/she? There are MDS and CMML FB groups and really you could fit in either, but I also don’t personally know anyone else with this specific category of MDS, and would love to know how many are out there and what they have been told. Please write me. Debbie

    #34739

    Kathleen Kearns
    Participant

    Hi Tracey,
    I have an MDS/MPN U, RARS T. I have elevated platelets and low red blood cells. It is tricky, trying to balance the two disorders that contradict each other. What exactly have you been diagnosed with? Where do you live?
    Kathy

    #34754

    Tracey BROWN
    Participant

    Hi Kathy,
    I live in Australia.
    So far I have been told it is MDS/MPN U. I do not seem to have any mutations, which seems to be unusual. I have very low Platelets, RCC and WCC, with myeloblasts in the peripheral blood, which as you mentioned contradicts each of the disorders. After messaging with Debbie, I know I need to find out more about my own diagnosis. I see my specialist in a couple of months for review and I will have a list of questions for him.
    Thank you for replying to my post.
    Tracey

    #34770

    debbie stern
    Participant

    Hi guys, So I was diagnosed with MDS/MPN U after being diagnosed somewhere else with multilineage myelodysplasia. I am not sure which it is. Will get a third opinion this month. I was told it is MDS/MPN U because my Anemia is Normocytic. I was told that it is usually Macrocytic if it is regular MDS….I am not even sure all Hematologists would agree with that, as the first one said Multilineage Myelodysplasia. I will let you know after I get a third opinion. I have Hgb of 10.7, mildly low Hematocrit and platelets and RBCs, and low normal white blood cells. I am watch and wait. Debbie

    #35753

    Diane Tatterton
    Participant

    My 75 year old father was diagnosed with MDS/MPN with secondary myelofibrosis in Feb 2017. Symptoms developed very rapidly late Nov/early Dec and he is now dependent on weekly red blood cell transfusions. We are based in the North East of England and he is currently being treated at our local hospital. Dad started hydroxycarbamide mid Dec and has just started Ruxolitinib this week. Main symptom (although there are many) is severe fatigue. This is such a rare disease we are keen to hear from any other overlap patients willing to share their experiences and advice.

    #36738

    Greg Coleman
    Participant

    I am a 55 yo male diagnosed with MDS/MPN about a year ago. I live in Rhode Island in the US. I started decitabine almost as soon as I was diagnosed with no side effects. After my 3rd round I started having issues with infections and was hospitalized 3 times for a total of 91 days. My hemoglobin dropped to 2.3, platelets 2,000 and my spleen was extremely enlarged. Ended up having my spleen removed and everything started turning around. Today my hemoglobin is 13.8, platelets are 294,000. I am scheduled for a stem cell transplant July 18. I have been a firefighter for 32 years, am in excellent health, take no meds. They tell me this is the cure. I am having transplant at Dana-Farber in Boston. I don’t feel sick in the least and am hoping to return to being a firefighter if all goes well. Wondering if anyone else had issues with the spleen?

    #36762

    Donna
    Participant

    Greg…………I want to wish you the best for your stem cell transplant. I will be interested in hearing how it all goes. I also go to Dana Farber and am still watch and wait. I plan to attend the forum in Boston on July 21. I am not a candidate for the full stem cell transplant but may be a candidate for the mini. That was only mentioned once. Time will tell I guess. I hope you do well.
    Donna

    #36765

    Ann Jones
    Participant

    I’m MDS/MPN RARS and am currently being given Procrit injections every 2 weeks. My hemoglobin is 8 or lower and my platelets are 1075.
    I’m fatigued much of the time and my oncologist is hoping that my H&H will be better next week but hasn’t told me plan if not. My hemoglobin has continued to drop even with procrit.
    I was told that one of the marrow problems would become the primary and I was hopeful that it would be the MPN as I believe it’s easier to treat and carries fewer symptoms.
    Not sure if any of this is relatable. I was diagnosed in 11/17 and was a wait and see. Not sure if that’s still the case.

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