#41310 05-31-2007 07:56 PM | Joined: May 2007 Posts: 39 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2007 Posts: 39 | Hello Forum; Is there any consensus of opinion whether or not I might return to more normal eating habits ? Facts: radiation treatments wiped out my salivary glands; radical neck dissection resulted in minimal movement of my lower mandible, and it is difficult for me to use common utensils so I don't. Nor can I do a full and proper cleaning of my teeth with such minimal access. Stretching increased the opening from 13 to 16 millimeters (about 5/8ths of an inch) as measured between the upper and lower front teeth, but that's about all the pain I can handle for now. I did not lose all sense of taste, but haven't fully explored what remains of my taste buds either. Although my long term dentist did a lot more work before treatment than what the cancer centre dentist specified, my teeth are now rapidly deteriorating and the prognosis for saving them is bleak. I cannot open my mouth wide enough for my dentist to do the necessary preventive or restorative work. Consequently, I am reluctant to take food orally with no saliva or effective cleaning technique to battle food related bacteria. I receive 99% of my nutrition via G-Tube, and the other 1% via disolvable sugar-wafer cone. I use medical ice cream as a training aide to help preserve my tongue's licking capability All kidding aside, I would appreciate any input with respect to what I am likely to experience in the long run, or if there are any helpful tips or suggestions that others have pursued with success. No need to shelter any bad news.... Thanks in advance for your assistance; JT2
Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
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#41311 06-01-2007 02:57 AM | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2007 Posts: 176 | I started with cottage cheese, ricotta cheese, apple sauce, etc as my training wheels. You have to start somewhere. Good luck.
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit) 3-9-09 last of 30 HBO treatments.
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#41312 06-01-2007 03:41 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Hello JT2
There are many products to protect your teeth. and many have said the saliva "sometimes" comes back slowly. (2 to 3 years) Everyone is differeent. There are two search engines here. One at the top & one at the bottom of each page. Click search, type in xerostomia. Do this on both searches.
I am just starting radiation, but I have read much here about it.
Accupuncture is an option, but only works for a few.
Trismus should be searched also. Good Luck, Petey
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#41313 06-02-2007 11:09 AM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2004 Posts: 188 Likes: 1 | JT2, You didn't say whether your rad treatment was IMRT or XRT. The likelyhood of your saliva returning, at least some, is much better with IMRT. I pretty much lost all of my saliva initially, but it has slowly returned over 3 years. It started coming back at around the one year point, and continues to improve. I still need liquids to eat, but the water bottle is not required ALL of the time like it was. I'm able to go for a 3 to 5 mile run without it. Just a piece of the dry-mouth gum. My sense of taste gradually returned to near normal after 12 to 18 months. There are some things that still don't taste right, and I still can't tolerate spicey foods, but improvements continue.
As far as the range of motion (trismus) issues and swallowing, does your health service have a speech and swallowing therapist available? Mine did, and her assistance was invaluable in returning to near normal. She prescribed a device called the Therabite which helped me to stretch my mouth open slowly over several months, and she also performed a swallowing study which identified where my problems were, and allowed her to prescribe a series of swallowing exercises to improve the swallowing function.
I hope this info is helpful.
Hang in there, the improvements are frustratingly slow sometimes, but things continue to get better.
Good Health,
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun. It's always something "Adversity doesn't build character, it reveals it." | | |
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