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    To bring everyone up to date, I was put on Reblozyl and had moderate results until I became refractory to the drug 6 months later. I had been on Procrit prior to that and that did not work for me either. Since the discontinuation of Reblozyl, I was put on chemotherapy, i.e. decitabine for 4 months and that did not work either. During all of this I was receiving blood transfusions on a regular basis. I have a very good local hematologist here where I live, and was consulting with one of the MDS experts at Moffitt.

    My condition has not worsened from my ‘low risk status’, or progressed, but I am refractory to all standards of care now, and am also ineligible for clinical trials as I have comorbid kidney disease, which doesnot allow me to participate.

    In conclusion, I am now on weekly or every other week blood transfusions which has a very negative impact on my quality of life. Moffitt has said, there is nothing else that can be done, as I have gone through all options. So, I guess I put up a good fight to find a cure, and now that all else has failed, I will have to live with blood transfusions, unless something else comes along. Soon, I will have another bone marrow biopsy, just to make sure the disease has not actually progressed and that my status is still ‘low risk’.

    So, my advice, is to try everything available, in hopes that one of them will work for you. It is a nasty disease, but being an orphan disease means there are few options, but for me other than fatigue I am asymptomatic and can carry on with work and my personal life for now.

    Kathleen Till

    I am high risk and hoping to get BMT this Saturday 4th.

    I have some health problems but pretty fit for a 73 year old – I think.

    How old are you and why have they not tried Azatidine on you? I guess because of your health problem.

    Read my other post. I am with Moffitt and live in Dunedin.


    Kathy Lynch

    Thank You for sharing… i am 3 years in, low risk. I have been on Aranesp for close to year… so far holding my own…but getting almost daily headaches and more tired. I know we all have MDS but our journeys are so different. I had breast cancer 15 years ago, lumpectomy, chemo and radiation. It was pretty easy to find other women who had a lot of the same “issues.” After the year of cancer life has been good. It was so weird to find out I had a rare cancer 12 years later. Doc said I was lucky those who get MDS after their initial cancer usually get it within 10 years… wooppie!!!!

    I love my oncologist…but he only has a couple of us with MDS …my MDS doc is at Stanford and I am not an exciting case.. LOL so it is hard to ask any questions…and when I do I always get “Everyone is different and respond differently???” So at times it can feel lonely… being able to read and share here helps a lo!
    As “they” say we don’t have expatriation dates on our foreheads!!! Hugs!

    Kathleen Till

    Have you had a biopsy lately and if so what were your blasts.

    I am going in Saturday to Moffitt for BMTransplant. Today I got the great news that the Venclaxta they gave me with my last chemo worked so well, I am now in remission. Because I am high risk still need the BMT for complete cure.

    I used to live in Danville, CA and there is a cluster of MDS there.

    Take care


    Kathy Lynch

    Congrats Kathleen!
    My oncologists does not feel anther BMB would be helpful at this time…as long as my numbers are holding. Stanford only does them with no drugs or even twilight!! Not real anxious to have one without.

    I am considered too “mature” for a transplant Seriously! I’m only 68… LOL But according to all the “experts” I won’t make it to AML before it takes me out.

    Strange about the cluster. I hit the top 3 ways to get MDS… Chemo and Radiation 15 years ago and 20 years working in a very smoke filled environment. As the docs say “there’s no way to tell what caused it but you do have the top 3 qualifiers.


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