[Vera W]

Hi Chirley,
About 8 months before my MDS DX I started having sores in my mouth. It was kind of like you get when you burn your tongue on something hot. In fact that would be how it started alot my tongue would be very sensitive to hot food, I would burn it and it seems like the wheels in my mouth would multiply. It was trouble some, I researched it and asked my dental hygienist, dentist and PCP about it and the best we could figure out was geographic tongue. It did go away but would come back fast. It worried me because I had never had it before and was concerned that it was a precursor to something being wrong in my body. AH HA and I was right! That was one of the first things my hematologist asked me, if I had sores in my mouth? Then I noticed the cycle and every time my neutrophils and WBC dropped I would get them. Just think of the Bacteria we have in our mouths and you figure with low white counts something has to go! Ever since I have been on the vidaza my tongue is beautiful. Sometimes in the low point of the cycle I notice a few but they resolve very fast. Hopefully after a while on revlimid you will see improvement. Ask your doc or dentist about some type of non-alcoholic mouth rinse, there are lot's of products and they will help! I worry that my mouth will be a big area of problems with my transplant but at least I have some experience with it!
We had our home built and it was definitely one of the best experiences of my life..Enjoy this!!! Savor every moment..and don't Stress!! Take care