| | Joined: Jul 2007 Posts: 30 Contributing Member (25+ posts) |  Contributing Member (25+ posts)
Joined: Jul 2007 Posts: 30 | Boy Nelie I have some of the same issues as you. Regular toothpaste burns and so does beer. I can do without the toothpaste but beer??? Actually Guinness is ok. I seem to have a "hot spot" on my tongue, lower left side that is affected by certain foods and toothpaste and hot, as in temperature, foods. Most taste is back, chocolate just recently but not completely, and only milk chocolate. Check out Dental Depot website for biotene products. I use the oral jel at bed time. Darn dry mouth. Finished my 35 rads and 7 chemos in Sept
Bruce
Age 57 SCC Stage3 BOT and 1 node PEG 35RADS
7CHEMOS Tx over 9-17-07 tube out 10-12-07 back to work 10-15-07.
| | | | | 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 | Bruce,
You're still a babe in the woods on the recovery road so don't think what is going on with your dry mouth, taste, pain, etc will be your last stop as you have many many more improvements left to come.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Hey Bruce, I can do Guinness too-as well as some other beers as long as they are not too fizzy or sweet. I also have a "hotspot" that is where the worst burning sensation takes place. Did you have surgery to your tongue? I did and the hotpsot, which is on the tip of my tongue, is an area where, after surgery but before radiation, would tingle when I drank wine or ate something acidic but not burn. In other words, it was some nerve reacting strangely from haivng a partial glossectomy. It was the radiation that made it supersupersenstive, though, and changed the tingling sensation to a pain sensation.
But David is right that you are still recovering way more than I am and you may find none of this is an issue for you a year from now. I hope for you that that is true.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | You guys are killing me. Beer!?! I'm only three months 11 days out, and have barely begun soups, and chowders and such, though I did brave a Sonic chili dog last nite with a bit of trouble. I made it through though, somehow. Seems like sometimes the struggle isn't worth it, but I'm ready to get rid of my PEG. All of the information you are sharing does enlighten me to a certain degree, in that I like to experiment, especially when it comes to food... but one of the biggest things I've learned is that we ALL take too much for granted... imagine the slow sweeping motion of a perfect tongue savoring a perfectly cooked steak as you prepare to take a sip of your beer... JEEZ! Keep up the conversation, it makes me feel better... gives me something to look forward to.... God bless us all!
The toothpaste thing... man, have I been checking them out. My dentist gave me a mouthwash and orange flavored toothpaste from 'the Natural Dentist.' Sensitivity has been my biggest issue since radiation... I have Sensodyne, Biotene, et.al., but this orange flavored stuff is my favorite... it's online and at different stores... at any rate, the flouride is in the toothpaste, and I brush it on my teeth, after brushing my teeth with my other tootpaste before bed, giving them a good coating... I can't get used to the trays... Nelie what is the flouride wash you use? You guys keep up the great conversation!
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Your not trying to sleep with the trays in are you? You are only supposed to use them for 20-30 minutes a day. I put mine in when I shower in the morning. I use Berry flavored GelKam in them. Gets the saliva going.
As to the taste thing, I think those that had surgery and/or rads to the tongue will prorbaly have longer recovery times than
those who only got collateral damage. I found letting beer and soda go somewhat flat allowed me to tolerate them. I still drink soda that way.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | God, John, if I could swallow a chili dog I wouldn't care if I could ever drink beer again.....MAN do I miss that kind of stuff!
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Eileen...no, I don't sleep with them... I avoid using them, and instead just sort of 'paint' my teeth 2-3 times a day with the flouride gel... I have to carry a toothbrush with me every where I go because my mouth feels so, well, just 'nasty.' And Nelie, I have very little mobility in my tongue so eating anything is a chore. Also, I had my bottom 4 molars removed prior to rad and I never realized until they were gone just how much they meant to me. I believe the chili sauce made it so that I could swallow everything... and, as I said, sometimes I wonder if it's all worth the struggle. Only time will tell... if I used the PEG for the beer that would be cheating, huh? So, it's all about the taste after all...
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | After Robs first outing after his surgery,his inability to drink a beer,and people he had known all his life treating him like a leper,on our return home and lots of angry tears,i put a large brandy down his peg.he couldn't taste it but it sure had the same effect,and he was relaxed and less distressed very quickly.
It was something we laughed about often in later weeks,although i remember the horrified replies when i posted about it.
During his last days,the hospice asked if he would like a brandy down his peg,but he managed to swallow right up until the very end,and enjoyed the taste.
love liz
love liz
Last edited by Cookey; 01-31-2008 08:19 AM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | John, I have Biotene Toothpaste and now no teeth LOL You can have it if you don't mention a good steak again.
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 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 | Jim,
That's what they make a blender for.
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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