| Joined: Mar 2012 Posts: 15 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Mar 2012 Posts: 15 | 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.
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0 Age 46 at DX RT June - July 2009
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | 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.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2011 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2011 Posts: 61 | 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?
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated") 33 rads ended 10/21/11. Dx Non small cell lung cancer 05/18/15 | | | | Joined: Oct 2011 Posts: 67 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Oct 2011 Posts: 67 | 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...
Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation. Leukoplakia Bx Feb 2011 - Lichen Planus. Bx May 2011 - Hyperplasia. Same sample retested as SCC. June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia. T3N1M0 Stage IV. | | | | Joined: Mar 2012 Posts: 15 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Mar 2012 Posts: 15 | 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.
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0 Age 46 at DX RT June - July 2009
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | 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!
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | 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
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2011 Posts: 126 | 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?
Emily - 24 years old at diagnosis HPV-, no risk factors T2N2b Squamous Cell Carcinoma Left oral tongue, poorly differentiated Hemiglossectamy, reconstruction, partial neck dissection 30 Radiation treatments, weekly chemo (cisplatin) 1/13/12 last day of treatment Diagnosed October 2011
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yes - spicy food causes tongue trauma - and vidicon foods too... ;)give your mouth a break for a bit.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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