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#201555 10-20-2022 02:13 PM
Joined: Oct 2022
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28 years ago I was diagnosed with carcinoma nasopharynx at age 45. Unknown cause, non drinker, never smoked. I had 30 radiation treatments for a total of 12,500 cGys in British Columbia. Apparently then the radiation doses were much larger than today. I grew up in L.A., but moved to a beautiful small village in B.C. In 1975.
I lost 30 lbs, and taste and smell. After several years, I recovered them and enjoyed a good quality of life for many years, then the long term side effects started.
I am now 73 and have had every side effect listed by the Canadian Cancer Society, including double vision, skin cancers, and osteoradionecrosis in my temporal bone, complete loss of hearing in one ear. After some dental work almost 10 years ago I lost my taste again.
Now my biggest challenge is big difficulty swallowing , teeth rotting slowly but surely, gum sensitivity and very little saliva. Saliva- A very interesting special substance! Am curious and interested in discussing saliva analysis, about mouth chemistry, improvimg Ph balance
I could share about many adaptations to make life easier after cancer. I am maintaining 90lbs on my small frame, eat mostly liquids, smoothies, soups, baby foods, etc.
My medical system here is potentially very good, but overtaxed now and living in a small rural area gives me few options to find a radiation oncology specialist.

Joined: Aug 2020
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Joined: Aug 2020
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Debra

Thank you for sharing. You are a warrior! Impressive. I am just over two years out from surgery and radiation treatment for stage 4 SCC on my tongue and one lymph node in my neck. Got 60 Gy over 30 visits to mouth and about 40 Gy to my neck. Lots of dental work now. I am in the dental chair every couple months to fix everything from a filling to root canals. But, I still have all my teeth. I try to remind myself that this is my new normal and an easy trade for the reduced risk of cancer coming back.

No swallowing issues yet but sure those days are in my future. I do miss saliva. Wow, so many things are related to this that I took for granted. Our social lives are wrapped around food much more than I thought. Really hard to eat and talk with little to no saliva. Takes forever just to clear my oral cavity enough to speak without spitting food on my friend.

I live in Huntington Beach but grew up on Wisconsin (darn near a Canadian!). Welcome to the OCF forum and glad to have you.

Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
1 member likes this: ChrisCQ
Nels #201563 10-23-2022 02:56 PM
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Nels,
Good to hear from you, when I first logged in and browsed this forum, I saw some of your helpful posts to others and similarities to my situation s. And very positive attitude which leans us towards health in all ways.
Am home now after several days of car travel after disappointing specialist consultation in big city. But I am only now more motivated to look for more sources of relief and improvement, maybe visit a naturopath friend, research saliva analysis and other things pertinent. Am learning already about stuff like Fentanyl patch and lidocaine jelly and prescription mouthwash.

One thing that has helped me let go of enjoying food is knowing that the ancient and current sages counsel that our purposes in life go far beyond sensory pleasures.

My ancestors came from Ireland mid famine and settled very happily in Erin Prairie and Ashland. Visited both Wisconsin and Mayo county Ireland with my cousin a few years ago. Good places both.
Debra


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