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Anyone else diagnosed with MDS/MPN–RS–T?

I was diagnosed with MDS/MPN – RS – T in 2017. Is there anyone else out there with the same diagnosis? If so, what kinds of treatment have you received for it?

  1. I have 5-q deletion MDS. I was diagnosed in 2017.

    1. I see that this is an older post, but I am diagnosed with MDS/MPN with SF3B1 and Thrombocytosis (too many platelets.)


      I'm being treated as if I have MDS/MPN RS T. I am taking 500 mg Hydroxyurea each day. My blood is checked every 5 weeks or so.


      My Oncologists agree I will need a Bone Marrow Transplant in the next few years.


      I feel pretty good and I have a good attitude (so far!).


      1. I was diagnosed in 2017 with MDS/MPN-RS-T. Currently, I take 1000MG of Hydroxyurea daily, and every third week injections of Reblozyl. I also have very high platelet counts (they have been as high as 1500). We also watch my hemoglobin carefully. It has fallen to 6.5 on two occasions which required transfusions. It usually ranges between 8.5 to 9.5. My worse symptoms are extreme fatigue and bleeding. I have been evaluated three times for a marrow transplant, but my chances of survival at 72 years old are very slim. My attitude is positive. I do have other risk factors including a 2019 triple heart bypass and Parkinson's disease. A JAK2 gene mutation is present. I would be eager to discuss further, since you are only one of the two folks I know of that have this form of blood cancer. Take care.

    2. I have the JAK2 mutation as well. My platelets went to 1.2 million at the highest. Unfortunately, I think they are climbing up again. I hope I don't have to take more Hydroxyurea. My Hemoglobin keeps hanging on at about 10, which is good.


      I also experience fatigue. My Doctor thinks it's due to the treatment.


      I recently tested positive for an autoimmune disease. Am waiting until the 19th to see the Rheumatologist.


      So sorry to hear about your Parkinson's disease. My father dealt with that for many years and I know how hard it is.


      I'm so glad your attitude is positive. I find meditation really really helps me. I meditate with an Instagram live group and it is so grounding.


      I hope you have a lovely Thanksgiving and I hope you're surrounded with lovely people.


      Cheers!


      Bonnie

      1. I have IL 1 RA myself but I know a few who are JAK related RA. Glad to hear that you have a test that you can use to help diagnose, so it should help a bit at least. Also finding an online group to share your thoughts and concerns with is another big step. Just know that we are also here if there’s anything we can do and above all else - you are not alone! Diagnosis time can be confusing and overwhelming, so if you need to reach out please do. Please let us konw when you find out more! Keep on keepin’ on, DPM


    3. Thank you so much! I had a separate test for RA and I am negative.


      I had a positive ANA test and am positive for Anti dsna which might mean Lupus. The Rheumatologist said they would coordinate their care with my Oncologist, so something is up - just need to take more tests.


      I will definitely check back in after I get a diagnosis.


      It is so nice to be able to share with this online group.


      Thanks again!

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