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After radiation for HPV neck cancer: Hang in there, it gets better

Posted by kent8692 @kent8692, Jul 17 7:42am

So 9 weeks out from radiation and chemo for HPV neck cancer…

Been a wild trip, some really down days and some days when life is pretty damn good.

Just had my PEG removed, so that was a nice milestone. Couldn’t have survived without it, but glad it’s outta here!

I have the usual items to deal with…dry mouth, fatigue, lack of taste, and some neck stiffness/soreness. The constant dry mouth may be the worst thing to deal with, but I’m dealing.

Diet is pretty boring, protein shakes, mashed potatoes, all kinds of noodles, but every once in a while I’ll have a piece of pizza or something that takes real effort to chew. Usually regret that decision, lol. Had a beer on Fathers Day, that tasted awesome:)

If you’re going thru this, hang in there it will get better.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

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csshman | @csshman | 2 days ago
In reply to @simplygrand "@csshman Good solid advice! Sorry to hear the weight didn't come back. Is your caloric intake..." + (show)
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@csshman

Good solid advice! Sorry to hear the weight didn't come back. Is your caloric intake just too low?

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@simplygrand I’m sure that’s it. Everything I used like no longer taste the same. I’ve tried going out to eat only to be disappointed. So food has become a daily chore that I try to fill with as much nutrition as I can. The good thing is I’m now wearing 29 inch waist? 😂

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lilypilly | @lilypilly | 1 day ago
In reply to @csshman "if it helps try to eat as healthy as you can. I can't eat much 16..." + (show)
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if it helps try to eat as healthy as you can. I can't eat much 16 month post CRT. I lost 50 pounds and mostly survived on Boost high calorie for awhile. Try High protein oatmeal. Make it a little juicy and it goes down smooth. Always add blueberries, bananas or some fruit. In the beginning I found Liptons chicken noodle soup in the pouch was good. I ate so much of it i can't stand it now. Mostly anything you can add a little sauce or gravy to makes it easier to chew and enjoy. Smoothies are good. Add protein powder. You can even make with your Boost for added nutrition. I've only been able to gain a few pounds back. I went for 180 to 128. This morning I was 132. Also, even though I'm tired I make myself get out and enjoy nature and do my walks with my pups. I also lift some light weights and do my daily neck massages.

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@csshman I read your post to my partner and her response was "did you write that"?
Our stories are so similar. I lost 80 pounds and none has come back on. I an eating 2 small meals per day but no tastes buds and dry mouth...nothing is enjoyable. I do qx smoothies per day using my Boost with added vitamin drops.
Thank you for sharing!

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jeffvalvassori | @jeffvalvassori | 1 day ago
In reply to @sepdvm "@jeffvalvassori I agree with you on medical team providing more information. We learn to ask more..." + (show)
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@jeffvalvassori I agree with you on medical team providing more information. We learn to ask more questions as we go along, but if you made it clear that you wanted details of side effects of treatment, then they missed the mark with you. Some patients would prefer not to have this information so it can be hard for the medical team to know. I wish I had known more about late effects of radiation. Just so we can recognize and address the changes.
I sincerely hope that your new mass turns out to be scar tissue and not cancer. But there are new treatments coming along regularly so we must keep fighting. A newer immunotherapy has squelched my last metastasis and after 2 years on and 3 years off it, I have remained clear. And as for the nerve damage, be patient because nerve tissue is very slow to heal. I had right sided facial paralysis 14 years ago when I woke up from surgery but improvement continued for many years. Research Lion's Mane mushrooms for support in nerve healing. Keep us informed about your results.

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@sepdvm thank you. I’m going to look up lion’s mane mushrooms when I get home. I’ve only tried them once but definitely worth looking into

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csshman | @csshman | 1 day ago
In reply to @lilypilly "@csshman I read your post to my partner and her response was "did you write that"?..." + (show)
Profile picture for lilypilly @lilypilly

@csshman I read your post to my partner and her response was "did you write that"?
Our stories are so similar. I lost 80 pounds and none has come back on. I an eating 2 small meals per day but no tastes buds and dry mouth...nothing is enjoyable. I do qx smoothies per day using my Boost with added vitamin drops.
Thank you for sharing!

Jump to this post

@lilypilly how long have you been post CRT? Fortunately i still like eggs over easy with toast. I do have to have a glass of iced tea to add some moisture to most mouthfuls. Eggs are good for you. I switched to organic bread. Much better for you. Cost more but worth it. Alternate eggs, French toast with syrup and 20gram per pack Peak oatmeal. Also more expensive than Quaker but better ingredients. I can also eat patty sausage with my eggs. Almost every night I eat ice cream. I do like my ice cream. It makes my mouth happy. Don’t know about you but I am eating more variety. I just don’t like much of what I am eating. I don’t feel bad about throwing something away after I can’t stand anymore. Keep trying. It’s just a challenge getting those calories when you don’t enjoy the food.

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