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Anyone dealing MDS and how are you doing?

Blood Cancers & Disorders | Last Active: May 9 12:29pm | Replies (23)

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@rrivory

I was diagnosed with MDS - MLD (Multi-lineage dysplasia) by BMB in 2020, but 2 other hospitals looked at my previous BMB from 2017 and said MDS was already present then. All 3 of my lines are low, with platelets and WBC being the most concerning. I have been on watch and wait since diagnosis, usually being seen every three months. There have been a few times (now being one of them) that my neutrophils dipped low enough that he preferred to only go 2 months between appointments. I am one of the lucky ones - I have no symptoms yet, and I thank God for that. My Dr. said if my neutrophils have dropped again at my next appointment, he'll want to do another BMB to see if anything is going on (increased blasts, new mutations, etc.)

If you don't have any other symptoms and your platelets are not dangerously low, I suspect you will end up in a watch and wait situation. It must be difficult to have to face this when you're already dealing with another cancer.

I can't verify, but I have read that red wine reduces platelets. Also, I see a naturopath, and one comment he made is that sesame oil may support platelets.

Please keep us posted on your biopsy results!

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Replies to "I was diagnosed with MDS - MLD (Multi-lineage dysplasia) by BMB in 2020, but 2 other..."

Cant thank you enough for the email!! I have been dealing with my other neuroendocrine cancer which I have learned to say its a desease I am living with.When the hemotologist called lat Friday at 5...well right before the weekend,I fliiped. But she did want me to look on the patient gateway and think this was leukemia,which thankfully its not. They have been giving me platelet shot for a while so I could continue chemo,but they dropped to 40 which put up the reed flag. Just a little more tired than usual as I still try to work. Going to get blood work tomorrow and waiting for the schedule department to call about the biopsy. I am hoping I am on the lower level to only need watching!! I saw my life flash on Friday and havent been able to get past that!