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Severe pain eating 7 weeks post-RT

Posted by ranchroad @ranchroad, 6 days ago

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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ranchroad | @ranchroad | 3 hours ago
In reply to @lizzyj58 "@lizzyj58 Was there anything that helped with the side effects? I suppose my husband will have..." + (show)
Profile picture for lizzyj58 @lizzyj58

@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!

Jump to this post

@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!

REPLY
1 reply
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lizzyj58 | @lizzyj58 | 2 hours ago
In reply to @ranchroad "@lizzyj58 Here's my toolkit for how I dealt with the side effects: - Started 600mg gabapentin..." + (show)
Profile picture for ranchroad @ranchroad

@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!

Jump to this post

@ranchroad Thank you so much!

REPLY
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lizzyj58 | @lizzyj58 | 2 hours ago

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!

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roblem | @roblem | 2 hours ago
In reply to @lizzyj58 "@sandy8043 My husband is about to start 7 weeks of radiation and possibly 3 chemo sessions...." + (show)
Profile picture for lizzyj58 @lizzyj58

@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 .

Jump to this post

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).

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