Loss of taste

[connieore]

Hello, I have MDS – RAEB-2 (Diagnosed in January, 06) and just completed my eleventh round of Vidaza Chemotherapy. This one was harder on my body than any of the others; more bone pain, some bleeding at the injection sites, bruising, hoarseness and then the feeling on the tongue as though I had scalded it with hot liquid. Has anyone else experienced anything like this? (I am 69 years of age, and seem to have had more longevity than most, having survived a year and four months so far)

[eve]

make sure they check your mouth and tongue for any fungus infections – my dad had many – i don’t know if they were caused by the mds or the vidaza treatments ( he was on vidaza for more than 3 years)

good luck

eve

[jaxem]

connieore
have the rounds been continuous (4 weeks each)? have you had biopsies since starting the rounds?

[Jimbob]

Connie,
At your blog I read that you are trying a number of soft, pungent cheeses. I have to wonder if these might not cause you a problem. It may be different, but after I had my SCT, the hospital’s written list of items not be be eaten for at least 180 days (later if white blood cell count was not high enough) included ALL soft, non-pasteurized cheeses. I couldn’t even have brie or blue cheese for almost a year because my counts were so low.

[BETTE BOOP]

CONNIE,I`M PROBABLY LATE IN WRITTING BUT I WANTED TO TELL EVERYONE I HAVE BEEN 6 YEARS WITH MDS AND STILL GOING. IT HASN`T BEEN EASY AT TIMES. LOSS OF VOICE, SOOO TIRED, LOTS OF BLOOD TRANSFUSIONS
BUT WITH GOD WE CAN DO ANYTHING. KEEP BUSY AND TRY NOT TO THINK ABOUT MDS TO MUCH. I KNOW ITS DIFFICULT

[chuckk333]

A recent news letter from either MDS Foundation or the AA&MDS Intl. Foundation had an article on foods to avoid if you have low WBC (especially neutrophils) I can’t find it as we’ve just gone to our home in CA from CO, but perhaps you all can find it by contacting either org. It did mention non-pasturized cheeses as some to avoid, especially the “blue” cheeses eg.brie, etc.

Chuck

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