Gary & Mark-

Well, after using the Nystatin for 3 days my husband's tongue is burning more than ever and he is spitting up more "gunk" than he had been for a while. He stopped using it last night and I'm hoping it calms down soon. Did either of you have that problem?

The one soothing thing that he can actually drink is iced tea. He forces down Ensure when I have to be gone to work, he can't feed himself using the PEG tube (too difficult, needs 3 hands, because we manually do it...he does not have a machine that drips it in). He has found that, amazingly, coke doesn't hurt. He stopped drinking it though, 3 weeks ago, because we were afraid that it my have been inhibiting the healing of his tongue. There was only a slight difference when he stopped. Both the oncologist and the dentist say that if it doesn't hurt then there is no problem with him drinking small amounts. He does have to be careful to brush his teeth after so as not to develop cavities.

As far as the dentist prescribing the Nystatin, we have been fortunate enough to have a dentist that specializes in treating patients with oral cancers and he is in contact with the oncologist (who is the one that recommended him).

My husband's spirits have been very low the past few days. He says he feels as though there is something wrong because he isn't healing. He is also experiencing pain in his shoulders and left elbow (same side they found the tumor). Do either of you know if shoulder pain is a side effect of the radiation? He does have an oncologist appointment on Thursday and we will definitely mention this. I am trying to be positive for him and remind him that there were times he felt things wouldn't get any better, especially during chemo, and that all got better.

Thanks again for all your support. I print out your responses for my husband as he hasn't moved into the computer world yet.

Lorie