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Hi,
There is a new story in the news section of the OCF that has an important report about the potential for oral cancer patients to suffer from fluoride toxicity which can cause a variety of symptoms, including gastric problems, difficulty in swallowing, knee and hip joint pain, etc.
The story is at:

http://www.oralcancerfoundation.org/news/story.asp?newsId=602


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
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Thanks Sheldon, Those of you with a good memory might rember this discussion almost two years ago.
http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/6/t/000129.html#000001

be sure to read the whole thing.

Just a pioneer in common sense.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Sheldon, thanks for the tip. I will refer my dentist to it today.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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Thanks for the tip! This might explain my hip pain and other symptoms. I'll raise the issue with docs and dentist

Ken


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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I just wrote down the article specs to give to my dentist. She is attached exclusively to our Cancer Care facility so I expect she should have further info for me about safe levels for those of us who are so faithful in following the directions they give.
I've had ongoing gastric problems since radiation...this may be part of the puzzle.
Thanks,
Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
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This is a classic example of risk vs. benefit. The benefit: - avoidance of OsteoRadioNecrosis (ORN) because of extractions due to dental caries, which could translate into having your jawbone removed.

The risk: - the items mentioned in the study.

Certainly this is something that needs to be watched. I have used presciption strength flouride for the last couple of years with no other problems or side effects.

And how did they separate this from the side effects of chemotherapy? Chemo is hell on the gastrointestinal system and does a number on the stomach lining.

Common sense is required here as is stated in the study. DO NOT SWALLOW it, use it sparingly. The stuff I use is a foam that I place in custom fit dental trays. A 1/2 hour after I remove the trays, I rinse whatever residue is left.

I can see where this could be a bigger issue with people with dry mouth

There is no doubt that excessive flouride is toxic, so are too many MacDonalds hamburgers! In a recent study published on the ACS site the colon cancer rate is 50% higher for those eating more than 3 ozs. of red meat a day (about a MacDonalds hamburger patty).

From all I have been able to read on this so called study it is based on the conclusions of the study of ONE patient. This is not a true double blind scientific study with a large number of subjects, a control group and a wide range patient demographics. It is merely a white paper that should lead to further scientific research to validate what I believe to be a hypothesis (I am not challenging it's accuracy). If I have missed something please enlighten me. An abstract of the study parameters is listed below.

"Abstract:

Background. High-concentration topical fluorides are used commonly to prevent caries in patients with compromised salivary function due to irradiation and chemotherapy.

Case Description. The authors describe a 50-year-old man with previously treated cancer who was using tray-applied topical fluoride gel. He complained of gastric symptoms, difficulty in swallowing, leg muscle soreness and knee joint soreness. A computed tomographic scan revealed thickening of the esophageal walls. An upper endoscopy revealed abnormal motility. The motility test indicated high-amplitude peristalsis and hypertensive lower esophageal sphincter, and urine testing indicated high levels of systemic fluoride. The patient's fluoride regimen was altered, and within a short period his urinary fluoride levels returned to normal and his symptoms resolved.

Clinical Implications. Clinicians prescribing home-applied high-concentration fluorides need to be cognizant of the symptoms of fluoride toxicity, carefully monitor the patient's compliance with the treatment regimen, and adjust the dosage or mode of application to control the total ingested dose of fluoride."

Here is a reference to oral complications from the NCI: http://cancerweb.ncl.ac.uk/cancernet/302904.html


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Thanks for the info. I emailed it to my dentist. (He lives next door). I will let you all know what he says.

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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I did not have chemo and I have not been taking flouride (still burns my mouth). I've always had stomach issues, but it's been over the top since radiation (ended last June). I attributed it to the liquid diet I had for so long and the stomachs difficulty in switching over to normal food. Every time I eat, it feels like it's coming back up. Thankfully it hasn't yet. On vacation last month, though, my stomach revolted on the food and I couldn't stop throwing up. I ended up going to the ER to get them to stop it. Ever since then, my stomach has been worse than ever.

Just a thought that it might not be entirely flouride.

Sabrina

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Sabrina, I have had bad stomach issues all of my life. Since I was a young child (age 5 or so) I have had a bad stomach. I used to live on Rolaids (ten to twenty per day). I tried all of the over-the-counter meds like Prilosec, Zantec, etc. I was finally put on Nexium by my GP and that has taken care of my stomach problems to 98% or so. I haven't taken a Rolaids since my chemo treatment. Which reminds me, my Oncologist said that one of the bi-products of chemo was that some high percentage of patients (I forget exactly, something along the lines of 70%) with reflux were virtually cured by the chemo treatment, which was ciplatin in my case. It sounds like you may have reflux disease from what you described above. You might want to check with your GP about Nexium.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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Hi Sabrina,
Good to see you back. Missed you and been thinking about you. Sorry to hear about the stomach problems. I've have had stomach and intestinal problems ever since my surgery 4 years ago. I've tried Zantac, Prevacid, etc and nothing really controlled the gas and flatulence. I found Maalox with antigas seems to work the best. Then I discovered, through pot luck, that a supplement, Fenugreek, that I was taking for mucous can cause flatulence if taken in doses > 100mg. I stopped it immediately and within a few days most of the symptoms disappeared. Still need the Maalox sometimes and still take the Prevacid but seem to be on the improve. Don't know if you take any supplements, but it might be worth checking the side effects if you do.

For those of you complaining about the taste of your flouride, I use GelKam Fruit and Berry Flavor in my trays. It tastes quite good and actually gets my saliva started in the am. It is .4 stannous flouride and over the counter. I pop the trays in when I shower in the am. This stuff might work for you Sabrina. My tongue was very sensitive after radiation and everything burned, but I was able to use the fruit and berry.

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

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