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Joined: Mar 2010
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Elianne Offline OP
"OCF Canuck"
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"OCF Canuck"
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Joined: Mar 2010
Posts: 126
Thank you all for your comments. I have emailed some to Gordon, as he will read things I send him (but won't come to the Forum himself), and hopefully he'll feel encouraged.

He's now carrying the water bottle with him everywhere (even to restaurants) and can now eat Japanese and Greek food, selectively, with water to wash it down. It's a big step forward! Tempura and kalimari are big hits (relatively speaking) right now. I think it's the batter. smile

I'd be happy to hear from anyone else on this topic, and thanks again.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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It is likely that it will never return to what it once was. As the saying goes...he will have a "new normal". Everyone recovers differently, based on their treatment plan and dose of radiation. I learned that saliva has two parts. The viscous part and the cirrus part. My rad doc said that the radiation usually destroys the cirrus (watery) producing salivary glands. That is why most of us oral cancer patients are only left with the viscous (thick) saliva, if we are lucky to have any at all. It takes a long time to adapt...just trying different things and ways of eating. For instance, I cannot swallow anything thicker than my saliva without drinking a liquid to wash it down. In fact, my doctor told me the truth. He said..."you will never be able to eat the way you used to eat". When he said that, I knew he was being honest. I am now three years post treatments and can eat most things, but not everything that I did before and not with the ease that I did before the cancer. Good luck to you and tell Gordon to hang in there because it DOES get better.


Nine years out. New normal with limitations, but surviving and living life to the fullest.
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I went almost 2 years with ~70% pre rad saliva. It was low enough to where eating with a fluid was my only option. A friend took me to an Acupuncturist. I know, I know this stuff sounds hokey cause I was a skeptic. The nice lady hit 2 spots on my right ankle and foot and woosh - saliva. My saliva has maintained about 85 - 90% ever since, even through my second round of radiation. This only took one visit. I was able to eat without drinking until my throat closed down and stopped moving. I still have saliva to my doctors surprise. I wish your man the best with his recovery.


11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
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I am about 14 months post treatment and have about 75 percent back now, it has been improving the more I eat. My neighbor is about 4 months ahead of me and he is doing pretty good now also. he also carries a water bottle everywhere he goes I don't as I have never been a big water drinker and at my age the more I drink during the day the less sleep I end up getting, guess that is what they mean by the "Golden Years" smile. My taste buds haven't improved as much which is my major problem as my hobby is cooking and it is hard for me to tell if something tastes good or not. Still having problems with anything sweet ie cake candy, cookies and ice cream tastes terrible.


54 yr old male, Tongue and neck cancer , left side of tongue base and 1 lymph node on carated artery on the same side.Cells checked and they were HPV virous Positive. Dx 4/09 finished treatment in July 09, Clear cat scan and pet scan in june 10, also have MS Dx 8/08 and am type 2 diabetic.
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