| | Joined: Mar 2005 Posts: 35 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2005 Posts: 35 | I have a problem of when it get really cold out and my neck is exposed my muscles tense up and my tounge will swell and turn blue. I have had a few CT's to look into the problem and they find nothing. I just had my 5 year checkup with a clean bill of health from squamous cell carcinoma. Radiation 46 treatments and 3 rounds of cisplantin. I do have some fibrosis of the neck muscles. My dr kids that he could write that I am allergic to the cold. To help I have to stop and get something warm to drink and hold it in my mouth. My problem is I still love to hunt and do out door activities plus I do have to walk sometimes to get to my vehicle at work. Does anyone else have this problem? What helps? Thanks and good luck to everyone here. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ive had experience with my tongue turning grey. Its something to do with bad circulation and cold temps. It hasnt happened to me in a very long time. Here are 2 links that discuss the subject. Sorry, dont have any ideas that will fix the problem. I just try to keep my mouth closed and bundle up with scarves when outside in the cold. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=92220#Post92220http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=113704&page=1
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Not a doctor of any kind here but turning blue would indicate to me that oxygenated blood flow has been compromised so perhaps a supplying blood vessel(s) gets pinched when the muscles tighten up. Just my 2 cents.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I was and am like Christine. My tongue still gets a dark grey color. Brushing it a lot with a soft toothebrush helps it to come back to it's normal color. I never heard of a blue tongue before this.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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