Anyone have issues with your tongue turning grey post radiation? It comes and goes but is really weird looking. It gets numb then the whole front half and underside of my tongue turns really pale grey for about 5 minutes or so then turns back to the normal red. My oncologist had no idea and I have a call out with my ENT. Just wondering if anyone had experienced it?

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=92220#Post92220

Turns out its a circulation issue which only happens occassionally. For me its when Im really cold it happens.

I have to keep ,my tongue brushed to keep thrush at bay. It gets a nasty dark color and looks dark grey until I do brush, then everything that comes out while I do is a nasty color like dried blood.

Jim,
Maybe you need to be on a maintenance dose of Nystatin for your thrush. I use 1 Tsp daily after lunch and it seems to keep it 'at bay'. Ask about it you don't already use it.

Eileen

Thanks everyone. I talked to my ENT and he told me to take 1 baby asprin a day to help with the circulation. He will recheck me next month so hopefully that will be ok. Thanks again for the advice.

I am soooo glad that this happens to someone else !!! It happens to me all the time. I say it is like my tongue is having a seizure! My tongue turns grey, numb and I am unable to talk until "it's" over. Seems to happen after a rapid movement...like leaving a restaurant, by the time I get in the car, my tongue is grey & numb. In the course of 1 day, this happens about 4-5 times. I asked my chemo dr. he said "ask your ENT dr. Well, at least I'm not alone..even if nobody else knows what this is...I'm glad YOU do!!!

I have had Nystatin and it didn't do much. Maybe it's from the implants in my tongue? Brushing seems to be what helps the most.

Dianne, I havent had an 'episode' for a long time. It just happens. I think I had it once during the whole winter. So that should be encouraging, the longer you are out of treatment the less frequent the grey/numb tongue appears.

Thanks Christine & EZJim, to say the truth...as long as I have my water w/me @ ALL TIMES...I could cope with Anything!!!

Water will be a part of you for a long time Dianne. I even take it to church and put it by my seat. LOL Now there are a lot that bring a bottle of it to church. Even the Pastor has one on his pulpit.