I'm now 12 weeks post treatment. Up until about 2 weeks ago, I was working very hard at eating. I really want to get rid of the PEG. Eating was difficult and I drank a lot of water to wash the small bits of soft foods down and soothe my burning tongue. Most everything I ate burned.

The radiation oncologist said it was nerves regenerating... so I kept at it. Then about 2 weeks ago, water began to burn. I can do only very small sips of water and I use magic mothwash to control the pain. I had a dental appointment last week and my dentist said that my tongue was irritated, probably as a consequence of dry mouth. He told me to try to keep my mouth moist and the tongue should get better in 10 days to 2 weeks.

Has anyone else had a similar experience? I'm a bit discouraged about the regression.

Other than my tongue, the swelling in my neck, and very little saliva, I feel pretty good... almost normal.

marilyn

I wouldn't think regression as much as you probably have thrush. Quite common at this stage. Get in to see your ENT or MO - you don't want thrush to go systemic. You'll need Diflucan or Nystatin or one of the other "...azole" family of anti-fungals.

Hi, Marilyn, When you see the ENT or MO, depending on whether or not it is thrush, you might also ask about using Lidocaine 2% viscous solution and or Rincinol prn to help with the tongue pain. Remember, these Docs have not personally expereinced this problem [they have vicarious info from patients] you need to keep pushing for answers when you have a pain problem. Amy in the Ozarks

Hum...I've had thrush. It doesn't look like that
to me. But I certainly will get it checked out.

thanks for your help.

marilyn

My last episode with thrush, which was 2 months ago, was a red tongue and a sensation that I burned it eating food that was too hot. It stung all of the time (and that at nearly 5 years post Tx). There were no white patches or any of the typical visual symptoms. My culture test came back positive. Ask them to to do a culture test as well. Find out what's causing it before you treat the symptoms.

At 12 weeks post post Tx you are still a prime candidate for thrush.

Marilyn,

Gary is correct. Post chemo and radiation treatment "candidiasis" or thrush can occur without the characteristic white patches I see in "healthy" patients. One of the reasons for this is that the condition can invade between cells and cell layers. This is due to the fact that the normal tight connection is weak and now can be penetrated by the fungus. Get it looked at and diagnosed. If it is thrush get it treated ASAP.
Systemic thrush is not fun...so treat it early.

Cheers,

Mike