MDS is a bone marrow failure disorder
MDS is a blood cancer
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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 4 posts - 1 through 4 (of 4 total)
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  • in reply to: Almost 42 a little over a year since diagnosis #57235
    Chris
    Participant

    Shaun – I’m sorry that you’ve joined the club at such a young age. I’m 50 and was diagnosed in October ’21. I’m on a watch and wait, but it’s being suggested that I would bypass treatment when my numbers start dropping and instead look to the stem cell transplant. I have heard several times recently that Dr’s are moving more towards aggressive streatment (i.e. SCT) in young, relatively healthy individuals before the disease has an opportunity to progress. I’m curious to hear if you’ve been told the same thing? For what it’s worth, I’m being treated at a COE.

    in reply to: Beta-glucan #57234
    Chris
    Participant

    Paula – I had my first CBC since I started taking beta-glucan, and my numbers were better across the board (RBC, WBC, and Hb, platelets were the same, but in normal range). Of course, I have no idea if the two are related, nor do I know if these improvements will persist. But I thought I’d provide an update. Next CBC will be in 4 weeks.

    in reply to: Young-ish and Newly Diagnosed – del9q #56918
    Chris
    Participant

    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.

    in reply to: Beta-glucan #56916
    Chris
    Participant

    Paula – newly diagnosed and started taking beta glucan in the form of the supplement Wellmune. I have blood work coming up and I am wondering if I’ll see any changes to my neutrophil counts. Of course even if there is a change, making a causal relationship between the two is questionable, but would be anecdotal support.

Viewing 4 posts - 1 through 4 (of 4 total)

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