Getting frustrated with throat pain post radiation

I to had the P16 cancer in my right tonsil witch went into my tounge and upper pallet its been 10 weeks since my last radiation treatment I had 42 treatments no chemo or surgery I thought I was starting to do better eating some soft foods then it got worse, I'm back on my protein shakes and that even hurts I'm 61 I've lost close to 50 pounds and just had a new Pete scan ,doc said the lymph nodes look good how ever he cannot say I'm cancer free as it shows still active he claims this could be do to the inflammation I've also been dealing with a swollen neck that makes me look like a bullfrog ,possibly lymphonema if any one else has had this let me know, my energy levels are low I wish I could workout but my calorie intake is to low I just found this group and reading through the post really helps. I'll pray for everyone on here ,I'm a painting contractor its just me and my partner and I had to work through the treatments and only took two weeks off when my partner was sick I try not to work full days as I'm exhausted but I raise to grandkids and take care of my mom so I don't have a choice, the dry mouth is insane and my teeth are now hurting, but this to shall pass at least that's my hope . I will be checking these post to see if I can find some new answers to what helps .on another note I'm checking into stem cell regeneration of Saliva glands they have grants in San Francisco that are doing this

@roblem I think you have a great suggestion here with honey. I might go a bit further and suggest Manuka honey as a stimulant for healing as well as soothing the throat. This honey is often quite thick so dilution with some warm water or tea would enable it to coat and soothe the throat. I wish I had thought to try this when I had mouth ulcers with radiation. And @noni777777 you seem to be well versed on the complementary therapies so might already be aware of the healing properties of Manuka honey. It is a soothing remedy for cough that equals or surpasses some cough suppressants in a recent study. The benefits likely outweigh the risks of the sugar consumed in this honey.

Welcome, @roblem. As a long time survivor of tonsil cancer, I'm confident your experience would be appreciated by members talking about tonsil cancer here:
- Just Diagnosed with Tonsil Cancer - How to Treat?
https://connect.mayoclinic.org/discussion/just-diagnosed-tonisl-cancer-how-to-treat/
There are several discussions related to tonsil cancer in the group https://connect.mayoclinic.org/group/head-neck-cancer/?search=tonsil%20cancer&index=discussions

May I ask what stage your cancer was at time of diagnosis? Did you have surgery prior to radiation?

Sure, in 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my lymph nodes was over 7cm and that is not a typo. I had no surgery whatsoever as I got a second opinion from Froedtert & Medical College of Wisconsin Cancer Center who said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct. In addition, cancer free in March of 2009.

Unfortunately, just diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and am finishing my research and second opinions. I have left partial glossectomy with a radical forearm free flap surgery scheduled for April 3. Also, includes a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.

One thing I am finding out is this big de-escalation cancer treatments coming about especially for people who got it as a result of HPV. I just talked to my oncologist a few days ago and he said I would have four different options if I had tonsil cancer today.

Once I have more time as I have a big decision coming up in a few days, I will definitely try to help where needed. I can tell them what to expect over the years and when as there were plenty of side effects from the 70Gy of radiation I had.

Diagnosed at stage 4B in April of 2015

Well in now 63 turning, 64 in April. I was diagnosed in April of 2015 so I’ll be 10 years out. Diagnosed at stage 4 B,I had molars pulled first then had tonsil surgery the doctor had to scoop out the back of my throat to get good margins. Did 35 radiation treatments and 6 chemotherapy treatments. It was hell on me I went from 235 lbs down to 150. Finally able to eat after 8 week after treatment stop and had the feeding tube removed end of September of 2015 told I was cancer free 9-11-2015. No saliva production for 7 years cavities at the unlike had bad receding gums had all test pulled had to do 30 hyperbaric treatments before having them removed and 10 after having them remover. Thyroid is shot and now on 2 different thyroid medications to get it back in balance. I’ve had pneumonia twice. 1st time was Christmas of 2022 and second time was November of 2024 I aspirate food and liquid every meal I’ve learned to cough it out of my lungs but it’s hard to clear it sometimes, I know the feeding tube is right around the corner. I’ve had a different look on life and love since I had the “C”. Taste buds kicked in about 2 months after the treatment stoped. Sense of smell was on over load sense treatment and still as good as ever. Lost all the grey hair (only) from the chemotherapy and it came back with vengeance. But I still have a dark streak of 1” of hair across the back of my neck at the top where the radiation burnt my neck. I get scoped every 6 months and yearly chest and head cat scans along with colonoscopy and endoscopy at the same time. It’s been hard on me but I think every day is a blessing and a gift from God if you ever need anything your welcome to react to my post it takes a while to feel better but after a year from treatment I felt like a 35 year old trapped in a 56 year old body and that stayed that way until I got the Covid shot in 2020. May God be with you as you recover. Mike

When it rains it pours! Sorry to hear of this latest development. At least you are in good hands. Froedtert did my initial surgery back in 2001 and I always believed they did an excellent job under difficult circumstances.
Good healing with this upcoming surgery and post treatment. Please keep me posted, PM if you wish. I’d tell you to have courage but you are already a lion.

I would say it took me about 4-6 months after radiation before my eating and drinking was somewhat normal. Soft foods, etc. Throat pain gradually decreased but it was 2 steps forward and 1 step back. There is a generic dry mouthwash at Walgreens/ CVS that really helped me with dry mouth resulting from low Salvia production. Hang in there it will slowly get better. Today I am 18 months out of radiation and back to about 90% normal with taste, Salvia, eating about anything, energy, etc. God Speed

I’m still doing radiation and to read this just crushed me!

Hello @cancergotme2 Welcome to the Head and Neck group although one would think you would rather be anywhere else but here.
With the treatments we all go through, rarely are two patients alike in course, response, overall health and so forth. However, throat pain is pretty common from the treatments, the experience certainly varies patient to patient. There are ways to help with this.
This is a very difficult fight you have found yourself in. It is likely the most difficult battle of your life. It is not however impossible, just difficult and for some, very difficult. It is normal-life halting. It is social-calendar cancelling. It can be financially altering and so forth. Surrender is not an option. As Churchill said, "If you're going through hell, keep going."
I and most everyone who follows this H&N feed have been down your road as a patient, going through this rough time, and coming out the other side to enjoy life. I can answer many of your questions. I can listen to your complaints. You can read many of the discussions over the past years here. While you might wish to comment or question on some of the older posts remember, many patients have healed and moved on, wishing not to remember this experience and therefore likely will not respond in kind. It is very understandable. Others like myself offer up our experience as perhaps a thought that we can help someone like you through the coming weeks, months, and yes sometimes years. Perhaps someday you might wish to do the same.
Please don't hesitate to ask, either by a comment on a discussion or better yet, start your own discussion with a question or three where we will see who can help you out a bit on this journey. In the meantime, Great-uncle Winston also was known for one word, "Courage!"