Hey There folks. Has anyone had issues with periodic, location specific swelling of the tongue? I can't seem to associate any foods or drinks that trigger it, and it is always in the same area of the tongue (front right quadrant, same side as cancer). Anti-histimine always seems to resolve the swelling though. I have mentioned to my RO on previous visits but he doesn't seem to have any sense of what might be causing, and since it has never manifested just prior to a visit, I have never had the opportunity to show him while it is occuring.
FYI, I am 3 years post treatment...and I am just wondering if this is yet another example of radiation specific side effects.
Would love to hear if anyone else has encountered this.

Oh, wow, I have this, too, and I am also three years out. My doctors have no clue, either. Another poster referred to it as "football tongue". It never lasts long, a minute or two at the most, and I haven't been able to pinpoint a reason, either. Two of my doctors thought that it almost sounded like an allergic reaction, but there isn't anything that would seem to trigger it. I would guess that it is just another example of "the gift that keeps on giving" - radiation.

Same here... My tongue swells for all sorts of reasons.. Foods,drinks, position of my head, sleeping position.. It really has an attitude of its own.

Same here. 7 months post rads. I have noticed that it does it either while I am exercising or right after. Maybe elevated heart rate? But it does it at other times as well. Who knows?

Me too. My oncologist said as long as it felt soft and the swelling went back down it's ok. Rads will do that.
He also gave me hope that some more saliva could return by September.
Funny the things we hope for now...

Thanks Everyone. It really is a comfort to know that there are folks out there going through the same things...not that it makes me happy there are folks going through the same things, well...you know what I mean. In this, I am glad that I am not unique. It *is* funny the things that we hope for now, versus pre-cancer days.

Hi Lori, my hubby gets the swollen tongue too, but on the opposite side of his cancers. It also goes down after a little while, but he says it's sore whilst it's swollen. His next oncology appt isn't until August, so will bring it up with him then. We don't know what causes it either!

FOOTBALL TONGUE!! I get it from time to time. At times it feels like someone has inserted a football into my mouth. Makes a nice change from my foot, but it is not fun! I think this happens to lots of us who have had one (or two) partial glossectomies. Warm liquids usually help me while cold liquid just turn the football into a block of ice! Ain't this disease fun?

Donna

Does anyone have problems with their actual free flap swelling? I woke up this morning and my real tongue is sore, but my flap is also really swollen and bumpy. I ate food with a lot of spices in it last night, so I am thinking it is that. It has lasted all day though and my speech is pretty effected by it. Has anyone else had a similar experience?

Yes - spicy food causes tongue trauma - and vidicon foods too... ;)give your mouth a break for a bit.

Ditto...football tongue is a good way to describe it. My mouth always seems a bit drier then too, and I still have numbness to my tongue which makes things worse. lol.

Mine lasts anywhere from hours to a day or more. Affects my speech and makes me 'play' with my tongue more, between the speech and tongue thrusting it's as if my IQ has dropped 30 points. Purty! lol :P