 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Jim:
Im sorry to hear you are still having difficulties. Nystatin burns like fire in my mouth too. Im 6 months post tx and not back to normal yet either. My tongue rubs on my teeth just like Nelie explained. My taste and swallowing are at about 75%. Have you tried yoo-hoo or chocolate milk? I have found those to be very soothing to my mouth. Do you use a regular toothbrush? I still use a baby's soft toothbrush. Even biotene, oralgel, peroxyl and oasis mouth rinses burn. I water them down and rinse with water after I use them. I hope you improve with more time. Hang in there.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | 
