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Solly Mack

(92,819 posts)
1. Dry mouth is pretty much a forever thing once you've had radiation to the head/neck region.
Wed Oct 26, 2016, 08:59 PM
Oct 2016

I do water, various mouth rinses, and sprays constantly. All day long. Seriously, I usually take a sip of water every few minutes, all day long. I keep a bottle by the bed. I keep spray as well. And, yes, I go to the bathroom all day and night long.

When my tongue gets sore, it is usually from going too long without moistening my mouth. The tip of the tongue gets more air just from opening your mouth, so it would take the brunt.

I'm sorry. I really am. You will find a way that works for you and you will have to stick to it. If the soda/salt mixture helped to keep your tongue from drying out, then keep doing it forever.

Careful that your tongue does not become infected. That can happen once it it too dry. Sores can form that can become infected.

Seasonal changes make it worse, btw. As the temp changes, etc.. . My mouth gets dryer during fall and into winter.

alfredo

(60,135 posts)
3. Thanks. I just ate a grape. I can taste it a bit.
Thu Oct 27, 2016, 03:01 PM
Oct 2016

I saw my doctor today. She is taking me off pilocarpine, and is giving me a different rinse. She said it is causing my sore nipples and sore tongue. So time will tell what works.

Solly Mack

(92,819 posts)
5. I hope that is it. Sucks having to find a new solution, but I do hate it when
Thu Oct 27, 2016, 03:17 PM
Oct 2016

my tongue is sore.

I've adopted an attitude of "What now?" about my body after treatment, but not in a grimace sort of way. More like morbid curiosity. I have to laugh, or I would never stop crying.

There are times when I am a less than pleasant person to be around because of all the stuff I'm going through though. Each new thing, or even expected things flaring back up, can be frustrating and depressing.

You'll never really be your old self again, but that doesn't mean you can't be better. Time (and I do hate that word now) is the key, and the hardest thing there is, because it means waiting. I was used to bouncing back quick from illness or surgery. Not anymore.



alfredo

(60,135 posts)
6. A nasty surprise happens, then becomes my reality.
Thu Oct 27, 2016, 04:30 PM
Oct 2016

I'm so glad I was able to thank my doc for saving my life. She gave me a hug when we parted. That made the pain worth it.

A couple weeks ago, my head and neck doctor told me, that because I am in my seventies, healing will take much longer. I didn't like hearing that, but I tucked it away and carried on.

alfredo

(60,135 posts)
9. My Dr called and said my thyroid levels are off.
Fri Oct 28, 2016, 10:23 AM
Oct 2016

She has me set up for blood work in two weeks. I guess my thyroid got hammered during Radiation or chemo.

alfredo

(60,135 posts)
11. Sure will. My wife has Hypothyroidism, so she can relate.
Fri Oct 28, 2016, 05:16 PM
Oct 2016

She said it could explain why I take several naps every day. We can both be taking synthroid. Togetherness

Solly Mack

(92,819 posts)
12. Could very well, with fatigue one of the signs.
Fri Oct 28, 2016, 05:52 PM
Oct 2016

Gonna grow old together, may as well do it together all the way. That's kind of the unwritten rule in our house.

sinkingfeeling

(52,993 posts)
2. The dry mouth stays awhile. I'm 8 years out and still carry a water
Thu Oct 27, 2016, 09:13 AM
Oct 2016

bottle everywhere. Even today, some foods, like vinegar and spices, will cause tiny blisters on my tongue.

You're making progress and things get better as time goes by.

sinkingfeeling

(52,993 posts)
7. Yes. For me, it took a year until I felt my life hadn't been ruined
Thu Oct 27, 2016, 06:24 PM
Oct 2016

by the cancer. It took a trip to Italy before I got to eating real food again.

alfredo

(60,135 posts)
8. I'm a long way from eating tomatos, or pesto.
Thu Oct 27, 2016, 11:22 PM
Oct 2016

I made my wife's favorite dish, broccoli, and garlic in soy sauce over noodles. I tried a taste of the broth. It was awful. He loved it.

I hope to be able to eat greens some day.

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