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Myelodysplastic Syndrome (MDS): how to increase red blood cells?
Blood Cancers & Disorders | Last Active: Sep 1 6:47pm | Replies (101)Comment receiving replies
Thank you for the wonderful introduction and explanation for the End Game. As best I understand the lab reports, my MDS will eventually morph into AML as well. Referring to the lab reports again, I continue to encounter MDS/MPN-UC. I assume these to be myelodisplastic/myeloproliferative neoplasm references, or acronyms? The lab Report also states that MDS/MPN is a very rare disease, and factors that affect RISK and PROGNOSIS are unknown.
I will start the 4th of scheduled six chemo treatments on 6/17 and am beginning to think this may be a waste of time. Father of a friend allegedly had MDS some years ago and declined any treatment. He survived two and a half years from diagnosis! My IPSS-R Cytogenetic score is "intermediate", and prognosis overall score < 4.5 with 25% AML progression in 3.2 years without therapy. However, considering I am in chemo therapy (Vidaza) I am not sure if it is extending my life, or just making me ill. And, my Oncologist initially suggested once started I should continue therapy to the end?? Does this seem reasonable? Have you any idea what the IPSS-R reference to MDS-7 for the intermediate rating is? The Calculator Report Endpoints are; Leukemia-free Survival (IPSS-M): 1.5 years, Overall Survival: 1.7 years, and AML Transformation: 14.3% (in 1-year). Not sure what other questions to ask so, any comment and/or discussion is welcome.
Replies to "Thank you for the wonderful introduction and explanation for the End Game. As best I understand..."
Hello @kmak1939stuart. I wanted to drop by to see how you’re doing. Last time we spoke you were about to start your 4th round of chemo for MDS but had reservations regarding continuing treatment. I know this is a personal decision and a difficult one to make, for sure. If you ever want to talk, I’m here for you. How are you feeling?
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I’m not really able to give you much guidance as to your type of MDS and statistics. I do know that MPN-UC isn’t common and it can make treating the disease more complicated. From what I’ve read though it can respond to the generally prescribed treatments for MDS and AML. But just as with some cases of AML (depending on the driving factors behind it) a bone marrow transplant remains the only potential cure at this time.
Since it’s been determined that a bmt isn’t a viable option for you, then this becomes a matter of personal choice as whether you continue with treatment or not. The goal of treatment for you is to keep the disease from progressing.
This may buy you precious time. If you do nothing then it’s basically throwing in the towel early. If you’re more miserable on the treatment than not, then you may wish to discontinue. And it will also depend on whether the Vidaza is having an impact on your disease or not. If it is, then you may want to stick with the treatments to see if it’s making a difference. You asked for my opinion and basically that’s what I would do. I’d want to do anything I could to hang in there a while longer. However, like you, if I started feeling the side effects weren’t worth it then I’d say enough is enough. There is definitely merit to having quality of life remaining.
I think you’ll know when it’s the right time to say ‘no more’ .
My other honest opinion for you would be to stop researching calculated endpoints or the prognosis for MDS or AML. No one can predict your personal endpoint and it won’t change the inevitable. But it is robbing you of the precious time remaining.
Think about what you’ve accomplished in the past 1.5 years or 1.7 years or 2 years!! There are many wonderful days ahead of you to not be worrying about that end date. Heck, any one of us could get hit by a bus tomorrow! So don’t waste a moment!
Enjoy your days with friends & family, do the things that bring you joy, have meaningful conversations with people who matter. Having been there myself, I found I didn’t fit into any of the statistical tables. I defied them all! 😅
I’m sure your doctor has you coming in for followup blood work. Is there any indication that the 3 months of treatments have had an impact on the disease? Have they mentioned seeing blasts in your peripheral blood? Did you have a bone marrow biopsy?