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Betts Offline OP
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I'm not sure how to do this....I'm new here....hello. I had radiation in my mouth for a small tumor in my lower right jaw. I had 10 treatments and now I am at 9 weeks since that ended and my mouth is still hurting and I have to use lidocaine all day long because of the pain. Can anyone tell me if this is normal for healing and how long have you had the mouth pain?
One of the problems is that talking makes my mouth hurt and I love to talk......LOL I don't want to go too far from home because I need to be able to rinse my mouth so often. I do carry a small bottle of the lidocaine/maalox mix and a cup to spit it into. Yuck
And I don't want to go to the park and walk because the pain interferes with any exercise, too. And I miss working out.
I hope someone out there can give me some positive feedback and support.
Thank you.
Betts

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Hello Betts,you have come to right place for support,when I was having my radiation to my mouth and neck I was given magic mouthwash and I rinse with baking soda and salt several times a day, each day you will start to see improvement it can take upto 6 months or longer for a complete healing but not that long for you to comfortably eat and talk read more posts here you will find lot of info to help you,good luck

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Betts Offline OP
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Hi...thanks for your response. I have the mouth rinse and have been using it after I eat and when my mouth feels like it needs it. I'm just concerned that it's been 9 weeks now and it seems that I have more pain....or the pain I have is more intense, even though it seems to be in a smaller area. I am using lidocaine all the time and am also concerned that I might be getting dependent on it....kinda like a junkie.....LOL...not funny! I'm only taking Tylenol and Motrin on occasion because I don't like the side effects when I took it regularly....(constipation) and I won't take any sort of narcotics for the pain. I've told my oncologist that I'll stick with OTC.
I just need to know that it will take longer than I had hoped.....and that it is very, very slow.....I won't wake up one morning and the pain will be gone....that's my prayer!
Thanks again.
Bette

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Hi Betts

I received 30 radiation treatments (60 Gy) for tongue cancer about a year ago. The pain lasted a long time, many months, but is essentially gone now. I have lingering tightness and occasional zingers (nerve pain) but that is more likely from my surgery. You stated the area is smaller. That sounds like good news.

Everyone responds differently to these treatments but I can tell you that I felt like exercise was extremely important to my recovery plan. Even though it cost me calories, I exercised essentially every day. Sometimes that meant light yoga or a walk. Sometimes I felt good enough to jog a couple miles. And, I was able to surf some days (I am lucky and live by an ocean). At a minimum, it helped my mental state, but I could also feel myself getting stronger over the weeks. It was more like two steps forward, one back, as it wasn't like I felt stronger every day.

As for being self-conscious of how you look or having spit cups with you, I get it. I had a feeding tube dangling out my nose and a hole in my throat (left over from the tracheotomy). At times, junk was dribbling out and down my neck behind the dressing and I didn't know it. The tube dangling out my nose cant be missed even if you try. But, I decided the exercise and being outside was more important than my pride. It took a couple days and a couple interactions with strangers of a "hello" as we passed each other on the sidewalk before I started to realize it wasn't that bad.

Maybe a friend or family member can join you? That helped me too. My wife or one of my kids would often join me early on. Also, I would sometimes go out really early so it was quieter/less people.

I hope you continue to recover and find ways to enjoy that which you did before all this. Praying for you.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Hi,
I had 30 radiation treatments and am three weeks out. My Dr prescribed hydrocodone and lidocaine for the pain from my radiation burn (which was quite extensive) and I constantly used and still use salt water and baking soda rinses (1teaspoon of each in 8 oz water) and the combination helped immensely…. Even waking up at night to rinse when I feel any discomfort. I have already seen major improvement and cut the hydrocodone in less than half of what I started on and no longer need lydocaine. I even ate a steak last night! I would certs consider a check in with your Dr just to have them take a peek and discuss options. Best of luck!


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Jewely

Thanks for explaining the exact measures you use for salt and baking soda. With this I don't have to guess at where to begin.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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I didn’t develop mucusitis until weeks after my 34 rounds of radiation was over. I’m not ashamed to tell you I took oxycodone, rinsed with Chlorahex 3 times per day and I would do the baking soda with natural sea salt throughout the day and night. I also rinsed with a flouride rinse 2x day. This took months to go away completely but it slowly did. But I also developed thrush repeatedly so I think that it complicated matters. Hopefully, you will heal quickly with the rinses. They did help. Oh, and I also used like an abusol type gel that I would put on right before bed because it would numb the area. I rinsed with the magic mouthwash immediately before putting it on. This saved me many times in the middle of the night when you need immediate relief.

Good luck!


Marianna

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