Severe pain eating 7 weeks post radiation: Any tips?

@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!

@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 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!

@metsgirl Thank you so much!

@lizzyj58 You are more than welcome. I was/ am HPV 16 positive as well. And yes, HPV positive patients generally respond well to treatment and have high cure rates. Trust your doctors. Best of luck to you and your husband!

@metsgirl Thank you for that suggestion, I will ask the oncologist when we see her next week. My husband had the tonsil with the tumor removed, clear margins. But the cancer is in adjacent lymph nodes, don't know how many. I feel like 35 radiation treatments as well as chemo is a lot but we have to trust that his doctor knows best. My husband's is HPV positive 16, apparently this has a very high cure rate , still it's very scary. Thank you so much for replying to my question.

@lizzyj58 Hi. You might ask your husband's treatment team if they plan on 3 biweekly 100 mg cisplatin chemotherapy treatments. And if so, why not weekly 40 mg cisplatin treatments. I had the latter. The side effects are significantly less with the weekly lower dose treatment. The research suggests that the key in the chemotherapy's success is to get to a minimum of 200 total mg. If he can tolerate more, then that is better.

My chemo made me nauseous but was completely controlled through antiemetics. I was also very fatigued which got worse over time.

@sandy8043 My husband is about to start 7 weeks of radiation and possibly 3 chemo sessions. How did your chemo affect you? I'm trying to anticipate how he may feel,very scary .

@roblem By the way, thank you for posting about your experience with acupuncture stimulating your salivary glands. I plan to investigate that in my area.

@roblem I was "speaking" to ranchroad about the amout of gys specifically applied to my salivary glands. Since the 70 gys are not delivered evenly throughout the treatment area I am questioning my radiology oncologist regarding the dose my parotid, sublingual and submandular glands received.