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Severe pain eating 7 weeks post-RT
Hi all,
First-time poster here. 40M, stage 1 P16 / HPV+ tonsil cancer. Completed 33 fx, 70 gy proton radiation about 7 weeks ago. No chemo.
Problem is, the treated back corner of my mouth and soft palate are set off into a fury without much provocation - 8-9/10 pain that leaves my nose running and eyes watering - think hot nail being pounded through the mouth. Eruption of clear painful blisters. It all subsides in 12 hours. Things that have set it off include a green smoothie with coconut water and spinach, Boost VHC drink; Orgain protein drink...to name a few.
Anyone else have similar experience? Did it get better? I'm trying to subsist on a diet largely of neutral dairy products, oatmeal, and bland soup. Hardly enough to sustain myself because "real" food is either too hard to eat or the taste disagrees with me to where I can't eat it.
Oncology team where I was treated (a global center for cancer) does not seem to care; it seems that unless I am found to still have cancer then I am effectively on my own to manage this.
Very much appreciate any advice or shared experience!
Tom
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@harleytiger Eating burgers…amazing. I’d do it if I didn’t think it’d put me on the pain train. I wouldn’t ever consider a feeding tube at this point since I’m now creatively finding ways to get calories until these damn “water blisters” go away and I can at least half eat like a human again.
Check out pilocarpine fo saliva, it’s a short acting salivary stimulant and might help at meal times, although maybe not so much overnight. If you ask for your DVH (dose volume histogram) you can check the dosage your different salivary glands received, which will provide clues as to how much you might get back. From the research I’ve done after 39gy of dosage to your parotid or sub-mandibular glands, they’re basically done for good. I also had tonsil and my submandibular was in the 50’s, so not expecting too much recovery from that one
You may want to talk to a cardiologist as I found out that besides recurrence, the biggest mortality risk factor is stroke due to the dose your carotid receives. Happy to provide more info on that if helpful
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1 ReactionWell some good news to share. Managed to eat a slice of super greasy pizza (less the crust) and 5 handfuls of movie theater popcorn (very carefully). A bit of salty burn from both but no huge reaction and not enough to stop me from eating it. Was really overjoyed. Hope it’s a sign my mouth might be starting to turn a corner.
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5 Reactions@ranchroad
I commend your bravery. You must of been on cloud 9.
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1 Reaction@ranchroad Please ask your med group about oral lidocaine gel or rinse. Using this just prior to eating made a world of difference for me while healing. Those of us who did not use a stomach tube for radiation must just grin and bear it to get the calories in. I like your half and half solution. I made smoothies of half and half, ricotta cheese, and a raw egg to get calories in. It is a battle but it gets better. Have patience and be strong.
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4 Reactions@lizzyj58 How is your husband doing? Where is he in the treatment schedule? I have been a bit out of the loop lately, my fault.
I know it is often more difficult to be the caregiver than the patient, harder still to witness the suffering. But tough times never last. Courage.
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3 ReactionsHis treatments start Nov. 20 TH, very anxious about this, not sure if he will have the 3 chemo sessions yet! Thank you so much for keeping in touch, it means a lot. I sincerely hope that you are okay.
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1 Reaction@metsgirl - I did meet with my Dr. this afternoon at my 8-week check-up, and discussed and showed him some pictures of the "blisters". He really hadn't seen them before, or if he had, couldn't remember a clear example. His advice for me was to try to eat more "real" food since it's been mostly different nutritional drinks and smoothies that have set it off. He said that eventually they would subside - So nothing profound.
My scans and exam did come back clear 🙂 ... was quite anxious about that
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6 Reactions@ranchroad First, wonderful that your scans are clear!! I don't get my first post treatment scan until December 4th.
Second, congrats on eating some food successfully. I tried a piece of sausage yesterday which set off about 6 or 7 blisters. But low level pain. I suspect it was the pepper in the sausage. I am extremely sensitive to pepper.
My doctors didn't think too much of the blisters either. They just encouraged me to keep eating according to my tolerance and seemed sure that eventually they would quit appearing. We'll see how it goes.
By the way, thanks so much for posting about the dose volume histogram. I've asked for my information. Right now I have almost no saliva, which is as bothersome to me as the blisters. It will be good to know how much radiation was delivered to my salivary glands so that I can manage my expectations.
Wishing you continued healing!
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3 Reactions@metsgirl I also just met with my ENT to get another opinion. He’s not a young doctor and had never really seen this. He prescribed me a compounded mouthwash with a steroid ingredient to see if that helps (basically magic mouthwash without the lidocaine). Otherwise the advice was to make do and get through it. I was never prescribed magic mouthwash during treatment, so I’ll give it a go and let you know if it helps this
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4 Reactions@metsgirl
I would ask your radiologist how much radiation you received measured in Gy (Gray). Standard care was for head & neck had been 70 Gy but there has been a big deescalation in recent years.
And the kind of radiation you received- Photon or Proton.