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#1
Mon Feb 18, 2013, 06:57 PM
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Tongue sores
I was diagnosed with MDS in Sept of 2012. My white blood count is a little low.
Red and platelets kind of ok. For the last two months I have experienced sores on parts of my tongue. They last for a day or so and then a new one appears in a different part of the tongue. Searching the web I see that MDS with low white counts can have mouth sores. It doesn't say tongue. I saw my Dr. in Jan and his nurse suggested salt and baking soda gargles. The best thing I have found is a benzoyl peroxide rinse that is used with kids with braces. Any ideas about this? I realize this is probably the mildest symptom I will every face. But I am also struggling with eating issues as I am recovering from a nissen fundoplication. I can only eat small amounts at any given time and am on a limited selection. I do take vitamins so I don't think it is do to low A or C for instance.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts 
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#2
Wed Feb 20, 2013, 08:59 AM
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Even though you take vitamins, you may not be absorbing them well. Insufficient levels of the B vitamins could be the reason for the sores. If you've been on meds for gerd, they block stomach acid. That acid is needed to breakdown the food to release the nutrients. You may need more bio-available forms of B12, folate and B6, as well as a good b complex. Just something to consider.
Also, a good probiotic could help.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#3
Wed Feb 20, 2013, 05:31 PM
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Good ideas
I think you may be on to something useful. I am not taking a B complex specific vitamin. There is of course some B in the regular vitamin. Also since I am low on protein (no big Macs or even little Macs) I could very well be getting less B than I am used to getting.
I am taking a probiotic which I recommend to everyone. I had Cdiff last year and it was awful. You need to keep those good bugs working! Carol
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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#4
Wed Feb 20, 2013, 11:44 PM
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Pure coconut oil is known to be healing for mouth sores - you need to swish it around the area for a few minutes before spitting it out. I also found "oil pulling" with coconut oil excellent for relieving a sensitive tooth I had.
See http://www.coconutresearchcenter.org...%20pulling.htm
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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