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Young-ish and Newly Diagnosed – del9q

Home Demo forums Patient Message Board Young-ish and Newly Diagnosed – del9q

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    I am a relatively young (50) and active individual who was just diagnosed with MDS. My journey began in 2018 when I had blood work done in response to a case of pneumonia. That blood work showed mild neutropenia, but normal platelets and hemoglobin. Since that time I have been seeing a hematologist / oncologist on a six-month interval with regular blood work. All of my numbers have stayed consistent: mild neutropenia in the range of (1.2 – 2.0), normal hemoglobin (~14) and platelets (190 – 240). Over the summer, I had a bone marrow biopsy that after much analysis identified MDS via a del9q mutation (it also identified plasma cells / M protein and a corresponding diagnosis of smoldering multiple myeloma). So here I am at 50 with two, rare, blood cancers and a lot of questions. Fortunately, I am seeing an expert in MDS at a Center of Excellence who said that I do not need treatment now or likely soon – which he defined as a year. But with a family and twin 9 year old sons, that’s cold comfort. Once I got over the initial shock I was able to begin some reading up on the disease, but I have not found much at all on del9q – if anything, that mutation seems more related to AML (which didn’t help my state of mind). Anyway, I wanted to introduce myself and see if anyone might have insight on 9q or any other advice for a newly diagnosed.

    Amy Clark

    Hi Chris,
    Sorry you are having to deal with this. Sounds like you are in a “good” spot, though, not needing treatment now and being seen at a COE. Several people on this forum have lived on “watch and wait” protocols for many years before starting treatment. Reading is good so you can learn what you can, but don’t let the multiple dx. run your life until/if ever, you have to. If anything, do things now to increase your faith and pray for wisdom. And enjoy your family.

    My husband was dx at 52 with MDS/CMML/MPN, but he had MDS/CMML at 50 when we look back at earlier labs. He was also very active. He started on a clinical trial three years ago that became the drug, Inqovi. He is still taking the drug, although lately he has been having problems with his counts and liver. Currently we are in another “process of discovery” as I call it, trying to figure out what is going on. Progression of one or more of the diseases? Liver inflammation? Transition to leukemia? We have six children, 13-26, but our youngest was 10 when he was dx. We understand some of what you are feeling. Feel free to call if you think it may help. Or not. Richard and Amy -832-540-4214 God bless you!


    Amy – thank you for responding to me. It doesn’t appear that there’s a DM option on the site, so I’ll respond here, too. I am still learning about how the cyto genetics and gene mutations are influencing all of this and I’ve got a ways to go on that. I am sorry that you and your husband are in a similar situation, but I do take some comfort in knowing that there are others like me out there. I am really struggling with the 9q deletion (which is really described as a transcription between my 4th and 9th), I don’t see much on this at all. I probably shouldn’t be so fixated on it considering that while the different mutations can inform response and prognosis, everyone responds uniquely. I’ll keep your information and reach out should I hit a wall on figuring this all out.

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