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Severe pain eating 7 weeks post-RT

Head & Neck Cancer | Last Active: 2 minutes ago | Replies (41)

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@lizzyj58 Was there anything that helped with the side effects? I suppose my husband will have a sore throat,possibly blisters! Maybe even a sore neck where the radiation will be aimed at!

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Replies to "@lizzyj58 Was there anything that helped with the side effects? I suppose my husband will have..."

@lizzyj58 For the radiation, they gave me gabapentin for the pain inside the throat. I did not need anything stronger. I was also offered magic mouthwash which numbs the mouth/throat to facilitate eating. I went to a liquid diet by week4 and did not need the mouthwash. For the exterior burn I used mostly a lot of aquaphor for moisture. They gave me topical lidocaine for burns and silvrstat for healing. I healed very quickly. For chemo I relied on antiemetics and rest.

@lizzyj58 Here's my toolkit for how I dealt with the side effects:
- Started 600mg gabapentin on day 1 of radiation. Eventually was at 1,200mg/day. I was prescribed hydrocodone (Hycet) but did not personally benefit from it
- Tylenol as needed. (don't exceed 3,000mg acetaminophen/day, the Hycet also contains it)
- Healios mouth rinse x2-3/day starting day 1. It's not inexpensive but did seem to work
- Salt & baking soda rinse 5-8x/day starting day 1. I made a new 16oz batch every morning. I am still using this to help with the "saliva blisters"
- CeraVe lotion on the neck x2/day starting day 1. I was eventually given special moist bandages to put on that area in the last week of radiation, which I used for 2 weeks. Note that proton radiation is harder on your skin than photon/IMRT. Neck healed up very nicely by 2 weeks post-RT
- Spread 2% viscous lidocaine all over areas of my mouth affected by mucositis before meals. Keep the bottle next to me as I had to re-up every 5-10 minutes to keep eating tolerable; this helped a lot but seemed to become less effective after week 3 or 4
- Warm saline nasal rinse before bed to keep sinuses clear and moist
- Gentle neck / mouth stretches x3 times per day as Rx by SLP; keep lymphatic system active and keep neck/mouth muscles loose and working so they don't get stiff
- Yoga or walking for 30-60 minutes per day. Need to stay moving; avoiding sitting around all day
- Above all else, FOOD IS MEDICINE...eating is your job, keep eating no matter what, it won't be easy and I lost weight even though I was determined not to. Running a calorie deficit will put your body into a catabolic state and your healing will suffer significantly. Find something (anything) you can keep down.

Hope that helps...that was 95% of what I did

Now 8-weeks post RT and just dealing with these "saliva blisters" (which seem uncommon). I've come to terms with the fact that I may just be dealing with them for several more months. I'm taking Tylenol for those and am otherwise just dealing with the pain because frankly I need to get on with my life and also need to keep eating as mentioned above.

Happy to answer questions!