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Thread: Pain and Difficulty in opening mouth after radiation treatment

  1. #1

    Question Pain and Difficulty in opening mouth after radiation treatment

    I am new to this forum and I was hoping to meet or talk to someone who has been through this journey and came out successful at the end.

    My FIL was recently diagnosed with buccal mucosa carcinoma and underwent surgery for the same. Afterward, he was suggested to undergo radiation plus chemo treatment (33 radiations and 6 chemos), which is now complete. It has been about 6 weeks since end of radio/chemo, but he still is in a lot of pain. He keeps saying that the pain hasn't reduced 1 bit post surgery. All his teeth and gums pain and he can hardly open his mouth 1 finger wide.

    Is this normal? We recently got the rhyle's tube removed and he has started taking food orally now. But watching him eat is quite painful. How long does this last? When can we start to feel a bit of relief?

  2. #2
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Hello, Lakshmi-

    I'm sorry to hear about your FIL. I hope the worst is behind him, but I'll be honest, the healing following radiation to the head and neck area takes longer than one might believe. Truly, the recovery will be measured in months, not days or weeks. I wanted to let you know that up front--there's no easy way around it. It just takes time. How much time, depends on the patient. Everyone is different.

    In the meantime, I hope his doctor's office is seeing him regularly, and helping him to manage his symptoms. There are many different types of mouth rinses/washes; some of them even contain lidocaine, which helps to alleviate some of the pain. I would strongly recommend doing frequent rinses with either a salt water mixture, or a 50/50 mix of water and hydrogen peroxide. Always use tepid, or room temperature water, never cold or too hot. The swollen gums and tongue will slowly return to normal.

    Speaking of pain, it may still be quite painful for him to swallow. If he's in severe pain, he should be taking a narcotic pain reliever. My radiologist always told me to "not be a martyr" when it came to pain. There's nothing beneficial that comes from suffering.

    Finally, you mentioned food and nutrition. It's imperative that your FIL get enough calories, not only to sustain his weight, but to fuel his body to recover. He will not feel like eating much, especially with a pained mouth. I always found that the Ensure drinks were something I could tolerate and even enjoy; food will taste different, and eating won't be pleasurable for a while. It will be hard to swallow breads, some meats, shellfish (like shrimp), and pulpy foods (like apples--at least with skins). His saliva production will be low. This will improve gradually, over time, but he will need lots of room temperature water to help with eating. Meals will be very slow. He'll have to experiment with different foods to see what works. If his doctor's office has a dietitian, perhaps they could offer some suggestions.

    I wish your FIL well; treatment of H&N cancers are insidious, but he will get better over time. Be patient, and don't expect too much, too soon. Please leave any other questions you might have.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

  3. #3
    Newbie New User
    Join Date
    May 2018
    Hi there
    I understand how you feel. I've been finished with radiation for 2 months now and I'm still dealing with its side effects on and off.
    Please get help for pain if you need it. It's terrible not to sleep.
    Drink and eat what you can. What I mean is, if Ensure is what you can tolerate do it!! My hubby fed me Ensure laced with a protein powder to ensure I was getting enough nutrition. Even now it's trial and error: I had pasta tonight but the tomato sauce burned terribly and made me cry.
    My nutritionist suggested a glutamine supplement to help with mouth sores. I think it helped some, maybe check it out?
    I'm attending Physical therapy now for trismus and it's a pain, but I can open wider than before and find myself in less pain.
    I hope this helps some friend. Think positive, you can do this


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