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#200774 04-13-2021 03:34 PM
Joined: Apr 2021
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Garvin Offline OP
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Hi Folks - new member here. I'm ten days out from a thirty day radiation treatment on my tongue and my neck. Just discovered the Forum and I'm so grateful to have found it. Google has provided mixed results in my search to find out (1) when I might be able to eat something other than Ensure, and (2) when will the mucositis in my mouth will subside to permit comfortable conversation without pain.

Can't wait to surf the posts and learn from all the first hand experiences that others have shared.


Tongue cancer survivor - 2 removal surgeries (March 2017 and December 2020) - 30 day course of radiation to tongue and neck (February to April, 2021)
Garvin #200775 04-14-2021 05:24 AM
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Garvin: Welcome. I recently had radiation on my lip and since a shield was placed inside the lip, my mouth was not involved. Therefore, I can't tell you much about when you can eat but I can tell you that for six weeks after treatment I experienced pain and discomfort. After that things got better so I will guess that you may be able to anticipate the same sort of ball park. My radiation ended in January and while reminders of it exist, they are tolerable.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
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Garvin #200796 04-22-2021 01:17 PM
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Hi Garvin

Welcome to OCF. First, everyone responds differently to RX but I will share my experience. I had 30 days of RX and 60Gy to mouth and neck last year. I had all the normal neck burns, mouth pain, and loss of taste. I also experienced thrush 3x but it was fairly easily controlled with medicine. Food and sensativity of neck, tongue etc continued to increase thru all treatment and 2 weeks after. My medical team warned me that I will bottom out about 2 weeks after my last radiation appt. They were right. Most everything came back fairly fast but flavors. I still struggle with anything spicy but it continues to get better every couple weeks. Dental issues continue as my saliva has improved but remains light most likely for the rest of my life.

Get a vitamix or similar. I used to play with all kinds of recipes but had to go blander and blander the deeper into treatment we went. At the end/worst i was only able to eat a few things - some tricks - add avacados to everything, taste was fine and lots of calories, scrambled eggs tasted fine, pancakes, french toast, vanilla yogurt, vanilla and chocolate ice cream, green beans, jello, boost, ensure, chocolate milk, simple soups, chicken pot pie...just keep trying stuff (careful of salty, any spice, pepper, etc). Any fruits with any acid tasted terrible such as a orange or grape or apple. I was able to do bananas almost all the way thru.

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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Garvin #200803 04-28-2021 12:34 PM
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Hi Garvin, welcome! I'm sorry to hear you are going through this but I'm glad you have found us.

I recently completed a course of radiation to my tongue/mouth and neck - last dose was Mar 22. So I am in the thick of it right there with you!

At the very end of my treatment and in the week that followed I was in a lot of pain, to the point that I had a pump to administer a constant infusion of hydromorphone subcutaneously. That was very short term - and now my mucositis is MUCH improved in terms of how it feels on a day-to-day basis, I would describe how it feels as a mild discomfort now, sort of like having a perpetually 'burned on hot coffee" sensation. I no longer need the hydromorphone. I do take pregabalin and duloxetine for nerve pain. I am comfortable speaking but do notice if I talk a lot my tongue starts to feel sore. Visually my tongue looks a lot better - the inflamed redness and ulcers are gone.

Having said all that, I am still surviving solely on Ensure shakes, much to my chagrin. I am SO sick of them, as its been about 6 weeks now . My sense of taste is still very much diminished and attempts at eating cause irritation and burning/stinging pain to my tongue so I have been avoiding most solid s only lately have I attempted some bland/soft foods (Ice cream - no, mashed soft veggies with butter -yes, cream of wheat - yes but tastes bad...etc) just trying things out to see what goes down easily enough.

I lamented to my doctor just yesterday that I was feeling frustrated with my perceived "lack of progress" but she reminded me that the radiation continues to take effect for a couple months! It is really a long haul...I feel well otherwise (energy good, more or less back to a normal routine) so it really is a mental game at this point. I really miss eating but I guess I will have to keep trying things.

Good luck!

2 members like this: Laney, Garvin

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