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!

@ranchroad Thank you so much!

Thank you! Just heard that his first chemo is Tues. 18th,apparently he will have 3 but each is divided into 2 sessions! Two a week every 3 weeks .How long was each of your chemo treatments? Doctor said 5 hours but most of that will be hydration!

Hi @lizzyj58,

I saw this mentioned yesterday in a different thread and thought I would pass it along in case you didn't see it.

jfh1970 | @jfh1970 | 3 hours ago
In reply to @justwow "@jfh1970 Thank you so much. I’m just wondering why they are recommending that I do the..." + (show)
@justwow The Mayo team believed the metastasis to my left lymph nodes were too extensive to risk surgery. Plus most surgeries end up needing radiation chemotherapy anyway. HPV+ SCC is very susceptible to radiation.
Ask the team if their institution is participating in the DART 2.0 trial, which tracks the DNA marker of the cancer cell death. Mine dropped to zero by week 4 and I was able to stop a week later (two weeks early - meaning fewer and less severe side effects).

Thank you,I will ask!

@lizzyj58 my chemo was cisplatin. Its taken once a week during radiation. I had little trouble with it. Evidently nausea is the biggest problem with it. I was never nauseous from it.

@metsgirl 300mg gabapentin seemed to knock out 90% of the pain associated with the "blisters", which is still bad. Might be worth a shot. I actually felt normal eating dinner with my family, even though looking in my mouth I can see blisters flaring up. It was actually unbelievable how well it worked.

I'd stopped taking gabapentin 1 week post-RT and had honestly hoped to avoid it because the dose I was on was making me feel a little foggy/loopy and I need to go back to work full time after thanksgiving and be very mentally sharp. I'm going to see if I can control this with 300mg/day (1 pill) until these blisters calm down. Will update in a few days once I can tell how well the gabapentin is working over a longer time period.

@sandy8043 My husband is having cisplatin as well but his is 1 treatment split over 2 days but he will have it before radiation starts again after 3 weeks and again at the end of radiation. Doctor did say today that he can reduce dose if my husband doesn't tolerate it well.

@ranchroad Thanks for the information. I'm really glad this is working for you. It's interesting how doctors approach things differently. I was put on gabapentin at the end of week 2. First 1 300 mg pill a day for one week, Then 2 pills a day for a second week. Then maxed at 3 pills a day until the end of treatment and then I was weaned the same way, 2 pills to 1 pill to none. I never felt loopy from the gabapentin but I had sleep adjustment issues while being weaned. So, I don't want to take it again.

My pain is very tolerable though. And my blisters seem to be coming from textured foods...solids that are dryer. I believe this is exacerbated by my lack of saliva. I asked my radiation oncologist and he hasn't responded regarding the gys delivered to my salivary glands. I'll ask again because this information is becoming more important to me.

Thanks again!!

@metsgirl ask them to send you the entire DVH report. They would have created it as part of the development of your treatment plan. It will show a curve (histogram) for all OARs (organs at risk) where you can see % volume by dose. You need that because your glands don’t receive one consistent dose. It should also have all of your CT slices with iso-gy contours superimposed.

Mine showed that nearly 100% of my right submandibular received over 50gy, and 88% over 60gy. So I think it’s basically toast.

Right parotid - 43% < 20gy, 75% < 40gy. So I think much of this one is coming back to life.

This is the kind of info you want. There are some studies that correlate salivary flow and improvement over time vs dosage received by the subject glands. Apply that to your own DVH and you can get a decent picture of what to expect. I can dig up the study if you want

My left glands were basically spared. Overall my salivas a bit stickier than normal but does actually seem to be improving. So it seems like my xerostomia isn’t quite as bad as yours, only been mildly annoying but something I can deal with. Dentist thought saliva flow was good enough where I shouldn’t have unusual dental issues.

I would imagine that since you got proton, they were able to spare your contralateral glands, and they’ll start to pick up the slack for your treated side. I’m assuming with that statement that you were treated unilaterally, obviously different if you needed bilateral radiation.

Keep asking and they will send it to you. I am an engineer with way too much time on my hands right now so have gotten into the details on almost everything.