| | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hi!
Wondering if anyone has experienced a horrible taste in their mouth? It's been 10 months since radiation, and I still have this putrid taste which comes from both side sides of my tongue in the very back and underneath. Not the worst thing I have to live with, but is awfully bothersome. I switched fluoride and it seemed to help for awhile, but now it's back with a vengeance. Some days it just makes me crabby!
Thanks....
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | ngk, can you define "bad"? If it resembles a sour dish cloth, that's thrush cooking.
Do you use a tongue scraper? I did before treatment and have continued that for many years.
If you don't have sugar issues, I would consider something like Manuka honey. A teaspoon from time to time will help with bacteria and yeast. If your blood sugar is high or you are diabetic, I wouldn't suggest it, though.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hey Uptown - it's definitely not thrush, since I just came back from the DDS. For the life of me I can't even explain the taste...the closest I can come up with is...sour fruit, (and just plain gross) and even that doesn't make sense. But the manuka honey is a great idea, I still have plenty left and will give it a try. I just can't imagine that I'm the only one that has this problem after rads, and hoping someone had it and resolved it! 
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Apr 2014 Posts: 13 Member | | Member
Joined: Apr 2014 Posts: 13 | Hi Nancy, manuka honey has been helping me. Three horrible sores on the tongue last weekend. Mostly gone now but this itching and tingling with almost everything I eat so awful. Start my last 2 weeks of rads tomorrow.
SCC stage 3, BOT, 1 Node, DX 4/10/14
CT4/10/14
PET4/11/14-clear (except for 1 node)
FNA4/14/14,4/24/14
T1N2M0
TORS 5/23/14
HPV+
30 rads completed 8/22/14
NED 11/6/14 😀
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Last two weeks! We can see the finish line!
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Ngk, if it helps, I had it and still get it from time to time 11 years later. 
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Nancy,
Last 2 weeks of what?
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Sorry David...I was responding to Tippie, only having two weeks of rads left. As soon as I hit submit I thought...that is not going to make sense. Uptown...I'll take a "time to time" occurrence. Wink I'm not sure if my question was bad timing or what, but hard to believe I'm the only one here that is struggling with this after rads. But hey, that would be great for everyone else! Hasn't even been one year yet, so I still have my hopes up.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Nancy - I'm six months post radiation and it is finally getting some better now. For first two months I had a horrible copper penny taste in my mouth most of the time. It occurred in the same places it does for you.
One thing that did seem to mask it some was chewing Trident gum. Cinnamon flavor works best for me, though in the beginning it mostly just burned when I'd try to chew it. A hard cinnamon candy works also.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Thanks so much for the reply Tony. The Trident tropical twist helps with the saliva...but unfortunately not the taste. Still have yet to try the manuka honey, I'm out of town til next week.
Oh well...all part of the journey.
Be well...
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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