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Hi all, I run a local chapter of Support for People w/ Oral Head and Neck Cancer in Southern Oregon. We have a member who is suffering from persistent burning mouth syndrome and nausea three years out after completion of treatment. She has tried many potential cures, conventional and alternative, over the past three years for both problems. Any ideas on how to resolve these persistent problems? What worked for you?

Thanks, Richard Boucher


T1N2bM0, Stage IV squamous cell cancer of left tonsil and 2 nodes, treated at Stanford. 44 yo at Dx in 2000, tonsilectomy, radical tonsilectomy/neck dissection, cisplatin X3, 30 rads.
Minimal side effect of Tx: some dry mouth.
Significant side effect of Tx: I'm alive!
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Re the burning, has thrush been eliminated? What about acid reflux?

How long have these conditions existed and were they always existing together?

Where was the cancer and what was the Tx?

What has she been told by her doctors?

What is your support group affiliated with?


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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Hello. Please give more info so we can try to help figure this out. Of course we are not doctors but are very familiar with all the after effects.

How was the person treated? chemo? radiation? surgery?

Where was their cancer? cheek? tongue? throat? etc...

What has this person tried so far?
You mentioned conventional and alternative cures, like what?

Have they ever been checked by a doctor who specializes in gastrio (digestive system) medicine?

Are they using a PEG tube or are they eating normal foods?

Has their gall bladder been checked?



Sorry for all the questions, but cant help if dont know more info.


Christine
SCC 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 smile
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I don't have the nausea but sure as heck have the burning mouth and anything connected to or near it. Get some magic mouth wash. It holds my pain off for awhile. Even biotene mouth wash does smome good. I tried something different at my dugyters because I forgot to take my standbyes.. I took a mouth ful of pepto bismol and helt it for about a minute the swallowed it kind of slow, Don't laugh because it worked.


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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Here are the details from the gal I'm posting on behalf of:



I don't have Thrush. Acid reflux is not a problem.

I have had nausea for over three years-even before the cancer was first detected. Burning mouth started after my surgery in 2007 when my surgeon had to remove one of my saliva glands to get to the cancerous lymph node behind it. There was no cancer in the saliva gland.

I had squamous cell carcinoma of the buccal mucousa (inside of my cheek). In March 2006 they removed the primary cancer and a few of my lymph nodes. The cancer was then stage 1 and had not spread beyond the original site which was about 1 centimeter in diameter. No further treatment was warranted at that time.

One year later in March 2007 cancer was found in one of my remaining lymph nodes on the right side closest to where the original cancer occured. Chemo and radiation went from May until late June 2007. No cancer has been seen since then, but the burning mouth and nausea continue. I just had another PET scan last month.

My doctors don't know what is causing my problems. I have tried every nausea medication that exists and none help. I tried mouth washes, Biotine, and a prescription mixture mouth wash containing an anti-acid and a pain killer. Only temporary relief.

I went to a GI doctor and she did blood tests and a scan of my GI tract. Everything was normal. She did not know what was causing the nausea. She said some nauseas are difficult to treat because there are many causes for nausea. She suggested various teas. I tried them but no success. I also tried accupuncture and holistic medications.

The nausea disappeared late last year for a couple of months but unfortunately has returned. Some days are better than others...

Thanks for your help.


T1N2bM0, Stage IV squamous cell cancer of left tonsil and 2 nodes, treated at Stanford. 44 yo at Dx in 2000, tonsilectomy, radical tonsilectomy/neck dissection, cisplatin X3, 30 rads.
Minimal side effect of Tx: some dry mouth.
Significant side effect of Tx: I'm alive!
Joined: Sep 2006
Posts: 8,311
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Certainly we are not to be compared to the experts you have already consulted so treat our comments accordingly.

The only person it doesn't appear that you have consulted is someone from the mental field. Perhaps stress is playing a role here? Maybe it's not only physical.


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
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How true that sounds David, Especially when it involves upchucking.


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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i am having the same problem with the burning of the whole mouth
doctor had me try a new rinse, not thick n gummy like magic mouth wash.It takes the burn away for me for awhile. Its called caphosol solution. It works for me but ask your doctor.You will need a prescription.


stage IV-B
SCC floor of the mouth. 6 rounds chemotherapy May 2008
resection of floor of mouth with parcel jaw removal.
Bilateral neck dissection and free flap reconstruction June 10, 2008
IMRT Oct.-Nov
PEG
SCC return 4/09 just found out

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