MDS is a bone marrow failure disorder
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 15 posts - 1 through 15 (of 19 total)
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  • in reply to: MDS High Risk #55054
    Sue
    Participant

    Hope you are doing well, Kathy.
    Let us know, only if you are up to it.
    Sue

    in reply to: questions about new q5 detetion diagnosis #55053
    Sue
    Participant

    Hi Mary,
    I don’t have much to add but wanted to send some healing vibes your husband’s way. I too was MDS 5q deletion along with a host of other issues but it is no longer an issue for me since my marrow transplant a year ago. The treatments for MDS and related diseases are growing so rapidly, hopefully they can treat your hubby accordingly! Hang in there!
    Sue

    in reply to: Bone Marrow Transplant Success #55049
    Sue
    Participant

    Rod,
    I was 63 years old when I had the transplant. Every one reacts differently and there can be issues that you might have that I did not. The transplant itself is typically non-eventful. It’s just like getting a blood transfusion. The lead up for me in the hospital was 4 nights of chemo, one day of rest, then the transplant. In the following week I had some mouth sores (chemo) nausea and diarrhea. Ten days after the chemo, I began to lose my hair. Your ANC number has to be at a certain level before you can leave, so they keep a board where they write down all your labs. It seemed like forever before mine began to rise but they finally did. I had two platelet transfusions while there. A blood clot from my port but other than that, no major issues. And yes, I would do it again. Part of my only issue during the transplant was that it was in the height of the pandemic and I could not have visitors. So my husband as able to stay with me for 10 days but had to go back to work. The original plan was he’d visit daily after that but because of Covid, once he left he couldn’t come back inside. So he stopped by and we visited “from afar,” him standing 4 floors down on the outside and me standing at the window, FaceTiming. 😊

    • This reply was modified 8 months, 3 weeks ago by Sue.
    in reply to: Bone marrow transplant for low risk MDS? #55047
    Sue
    Participant

    A second opinion saved my life. I was seeing a hematologist/oncologist regularly for 20 years for a Myeloproliferative neoplasm titled Essential Thrombocythemia. I moved away and had not yet hooked up with a new Dr when my primary care physician called and told me she set up an appointment with a new hem/onc because my labs showed blasts. I went and had a bone marrow biopsy which showed my blasts at 3%. After much personal research, I Wasn’t comfortable with a watch and wait so I researched specialists and found a Dr. whose speciality was MPN/MDs and other similar diseases. I made an appointment and in the two month time frame from when I called until my appointment, my blasts had risen from 3% to 10% and I was told the same thing. I was relatively healthy and the best chance for a bmt to have a successful outcome was now. I am 14 months post transplant. MDS can change that rapidly.

    in reply to: Bone Marrow Transplant Success #55041
    Sue
    Participant

    You are welcome. I am 14 months post transplant and the biggest “quality of life” issue I deal with is the pandemic. I have been vaccinated along with the booster shot but with every new variant, I tend to hunker down.
    Without Covid, I believe I’d be living a somewhat normal life!

    • This reply was modified 8 months, 3 weeks ago by Sue.
    in reply to: Bone Marrow Transplant Success #55034
    Sue
    Participant

    LLS.org is the Leukemia & Lymphoma Society. They also have great resources and support.
    Search for – Transplantation: Blood and Marrow or support resources.

    in reply to: Bone Marrow Transplant Success #55033
    Sue
    Participant

    If you are on FB, check this out.

    https://fb.me/e/HenNIG7R

    in reply to: Newly Diagnosed with MDS #54925
    Sue
    Participant

    Hi Kathy!
    Hope all is well. I replied to the email address you posted. Check your spam if you don’t get it.
    Try to get some rest. Let me know if I can help!
    Sue

    • This reply was modified 9 months, 3 weeks ago by Sue.
    in reply to: Newly Diagnosed with MDS #54923
    Sue
    Participant

    Kathy!
    Thanks for checking in. I was thinking of you yesterday. I knew you were “moving in.”
    I must admit, I have not read the rules but if you were to post your email, I will get a message that you posted. I’ll check and when I email you, then you can always delete it.
    If we don’t connect for whatever reason, make sure you chew all the ice! I could not hold it in my mouth for long so I chewed it. I only ended up with a small amount of burning!
    Sue 🙏

    in reply to: Azacitidine #54916
    Sue
    Participant

    Hi Lee,
    I was on the Vidaza injections for 6 months, along with the pill form of Venclexta. I had no side effects at all except bruising. They were injecting it in my stomach so after a few months I was really bruised and the shots became annoying so I asked to have it given through an IV. It takes longer, about 45 minutes as opposed to a shot and you’re done, but for me it worked. The 6 months knocked my blasts down low enough that I could get my transplant.
    Rooting for you!
    Sue

    in reply to: Newly Diagnosed with MDS #54908
    Sue
    Participant

    Well kiddo,
    I’ve been through it so if you have any questions or just need a shoulder, let me know. Moffitt will take good care of you, ask for what you need. If you live in Dunedin will they let you go back home when released? I am north, in Ocala, so we had to find an apartment for 90 days. I was away from home for about 4 months with hubby and eventually, our furry daughter.
    I will be thinking of you and sending healing vibes. You got this!
    Sue

    in reply to: Newly Diagnosed with MDS #54906
    Sue
    Participant

    As scary as it all is it is great news! ❤️
    My transplant was done at Moffitt. You are in good hands. Vidaza and Venclexta worked wonders to knock those blasts down!
    When I went in to the hospital, they were already in covid lockdown, same like they are now. There was a recent lift of those rules, but I see they are back in place. Hubby stayed with me through the transplant; but could only stay for a total of 10 days. It was very difficult being alone but not much I could do about it.
    I’m wishing you all the best. Check in if you are up to it.
    Take good care,
    Sue
    PS – tell your daughter to ask for the blow up mattress topper. It will help. 😊

    in reply to: Newly Diagnosed with MDS #54903
    Sue
    Participant

    Lee,
    When I was diagnosed with MDS, my hem/onc waited to have the pathology report in her hand before she would render her diagnosis. After reading the results, it was the pathologist who pretty much told her what I had and what the next step should be. Even that was iffy for me because he suggested watch and wait while I watched my blasts climb. I had my transplant August 06, 2020.

    I don’t know why computer vs biopsy would be so different but my last bmb result from pathology was 27 pages long so maybe your computer result was based off blood smears and not the actual marrow which takes longer to process. Also, it could be that the computer is only the preliminary result.

    So, even though you think the Hem/Oncs of the world would know a lot about MDS it seems a lot of them only know the basics. I’m glad you are seeing a specialist. That should help a lot.
    Keep us posted,
    Sue

    in reply to: Newly Diagnosed with MDS #54902
    Sue
    Participant

    Kevin,
    I think the blasts are the key to determining a transplant. In my case I went from low risk to intermediate risk group and put on the “watch and wait” list. That drove me crazy! By the time I got a second opinion, I was high risk, put on Vidaza and Venclexta for 6 months then it was time for the transplant. As the blasts get closer to 20% the concern for your MDS turning into AML is higher.

    in reply to: MDS High Risk #54900
    Sue
    Participant

    Thanks, John!
    I did really well for a year but as they weaned me off of the immunosuppressant meds, I got graft vs host disease so I am battling that right now.

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