Severe pain eating 7 weeks post radiation: Any tips?

Thought I would leave an update - I’m now 14 weeks post-RT.

For about two week, I haven’t had any painful blisters. A few pop up here and there, but not like they used to, and no pain, which used to be searing. For the last week, I’ve been chowing down on Tex-Mex, chips & queso, popcorn, chicken fried steak, BBQ brisket…you name it. Maybe 50% taste but I’m not complaining. A little irritation from spicy salsa, but nothing bad enough to keep me away. There is hope! I was drinking half & half two weeks ago to keep weight on and I jumped straight to fajitas. Not what I expected but I’ll take it.

And my 12-week PET came back NED. Feeling blessed after a truly awful 4 months.

Merry Christmas!

@roblem Thank you so much for all these helpful suggestions. I have the Xylimelts. I will try the sprays. If i do not regain saliva over the next year or two, then I will definitely look into acupuncture. I am glad to see that there are now a number of clinical trials addressing xerostomia. They all require that the participant be three years out from treatment. So, something else to possibly consider in the future.

Congratulations on your retirement!

@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.

Hi @metsgirl

Congrats, I too recently retired in at the beginning of the year.
I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of Cisplatin chemo for tonsil cancer back in 2008 but no surgery and to help with the brutal dry mouth and after my research I tried ELECTRICAL STIMULATION ACUPUNCTURE in 2015 which was offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and has been a non-issue even with only one working salivatory gland, and I don't have to carry a water bottle with me either to this day. Since then, I believe there are other additional avenues like sprays to help with that.

I got this from my other cancer group SPOHNC and it mention AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.

In addition, I didn't have this available to me but others on this support group site have mentioned “Xylimelts Stick-On Melts” you can buy off Amazon and the box of 40 was less that 10 bucks. People say they really work, and they sleep through the night. And their daytime dryness is much better also. You should research using for extended period of time effects. Also, Biotene spray is effective long time after 2 or 3 sprays! And more recently there is a Aquoral Protective Oral Spray- Dry Mouth Relief which is more than temporary relief of dry mouth. Or a prescription of Cevimeline.

Hope this helps for the dry mouth.

@ranchroad Thanks again. I did ask for the DVH. I will ask again. After you posted on this I did some research of my own into the histogram itself and studies on the dose volume and saliva flow related to each gland. I am a recently retired university professor with too much time on her hands. So, I too, have a tendency to dig into things!

Unfortunately, I was treated bilaterally, one lymph node on each side was affected. So, that explains my more severe xerostomia. I am hoping I can regain some saliva flow. But who knows?

@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.

@ranchroad Thanks again. I did ask for the DVH. I will ask again. After you posted on this I did some research of my own into the histogram itself and studies on the dose volume and saliva flow related to each gland. I am a recently retired university professor with too much time on her hands. So, I too, have a tendency to dig into things!

Unfortunately, I was treated bilaterally, one lymph node on each side was affected. So, that explains my more severe xerostomia. I am hoping I can regain some saliva flow. But who knows?

@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.

@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!!