Forum Replies Created
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.
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.
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.
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.