| | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Has anyone ever had issues w/ their tongue having like a "seizure" ? Out of nowhere, my tongue will turn grey & feel numb? It lasts a min. or so. During that time it is very hard to speak, words are slurred. It seems to be happening more & more frequently, say 7 x in a day. I am also concerned about white patches on the R side of my tongue. In 8/09 my dr. did a swab, it cam back neg. f/cancer (ya) I call the patches "scar tissue" from the radiation, but my dr. calls it an ulcer. Sometimes that area gets painful & I apply Lidocaine Viscous 2%. It coats it for a little while. Another problem I have, is that because I am receiving SS Disability, I am earning over the medicare limits. Now every month, any medical issues, I have to pay the 1st $240. I so can NOT afford to do that. I still have a port in that needs to be flushed every 6 weeks, I'm due for another CT scan in Oct.& my chemo dr. wants me to go for another scope @ the ENT dr. too. My medical bills are adding up! Beacause I am not computer savy...at all, I messed up the "signiture line" but my history is BOT T3N2M0 No surgery, radiation&chemo, port, peg. Treatments ended 6/20/08. All so far, so good. Thanks everyone, DianneMH
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | 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 | Diane
BOT T3N2M0 No surgery, radiation&chemo, port, peg. Treatments ended 6/20/08. All so far, so good.
Just highlight the above with your mouse and click on EDIT at the top of your screen and click COPY and then click on MY STUFF and then PROFILE and scroll down to the Signature block and just click you mouse inside the box and then go back to EDIT and then click POST. After it's in the block then click SUBMIT.
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 | Diane, I would suggest that you brush your tongue a couple of times a day bith Biotene toothpaste. That's what I was told to do. I get the grey tongue everyday, but the soft tooth brush, mke sure it is soft, with biotene paste on it helps a lot. Just don't look too close at the brush when you finish LOL. It looks nasty. Then I wash it off with hot water and dipit in alcohol.
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
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hi David, Well I think I did it ! I followed your directions & I hope I did it OK. Thanks so much for helping me w/the sign. line. Also David thanks for ALL the posts you have, what a source of security, hope & encouragement you have provided to so many over the years. You are a blessing to us all! With much appreciation, Dianne MH
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Good Morning EzJim, Thank you for responding to my problem. But, my tongue is not grey all the time. It comes on like a, I don't know, it just all of a sudden turns grey & I cant even hardly move it during the "seizure" I know, it is very strange. Also, I am so affraid of tampering w/my tongue!!! I will try to brush it like you said...but I'm not going to like it ! Dianne
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hi David, Well I think I did it ! I followed your directions & I hope I did it OK. Thanks so much for helping me w/the sign. line. Also David thanks for ALL the posts you have, what a source of security, hope & encouragement you have provided to so many over the years. You are a blessing to us all! With much appreciation, Dianne MH
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | 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 | Congrats. It's a learning curve we all have to go through.
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: 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 | Dianne, the grey tongue problem you are having is very unusual. Its happened to me many times. My doc said its poor circulation. It seemed to happen when I was cold, like going outside on a chilly day. I havent had any more episodes lately.
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 | Christine.....you're back!!!
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.
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