Getting frustrated with throat pain post 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.

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?

@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.

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

Finally did turn the corner
Thanks!
Radonc put me in Trental and vit E and I used red light

Not sure what kind of cancer you had but I had 35 rounds of radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 and I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey and it took some of the edge off for me.

Hi @noni777777 and welcome to the Head and Neck group here on Connect.
It seems like a lot of advice is coming your way but one wonders if any has had the actual experience. Here you will find those who have experienced what you are going through.
I have a couple items for you. First, milk. It doesn’t matter if it comes from goats, yaks, cows, or whatever, it will cause phlegm issues and contribute to hacking.
Next, could you expand on your cancer please such as where exactly, what was the treatment so far, and what type was it?
Have you had a conversation about feeding tubes? You are not even half way into radiation treatment and by that I mean the effects continue to destroy for several days after it ends. You will probably not find much of anything tasty or appetizing shortly.
Anyway someone here can answer questions. Don’t give up in this most difficult fight. Courage will get you through.

I'm on day 16 of 35 radiation treatments. My throat is getting a bit sore. I can only drink Goat's milk but now it acts like it went a bit into my lungs and it starts me into a dry cough that doesn't produce anything. I do get lots of phlegm and thrush. I have a suction machine that helps get a lot of that out. Sometimes in the morning when I am getting this gunk out there is bits of blood. So far nothing is stopping the thrush. So maybe some of this is getting dried in my throat? I would like something to sooth the throat so I can get the Goat's milk down without choking and coughing. I've lost a ton of weight. But reading here that so many had to go about 2 years to get past it all is disconcerning. I've been rearranging and restocking my kitchen for the day I can cook again. I found Ancient Whole Grains to grind myself to get away from the bad flour the US grows. I'm going with a monthly service to get my meats from healthy animals. Luckily, I have enough grocery stores around with organic produce. All this research right now so looking forward to the day I can start cooking again. When does the throat open back up after all the radiation? I also have a holistic doctor alongside this Radiologist and he got me off sugar, onto doing coffee enemas weekly that cleanses the liver that helps the body with the radiation, Mistletoe injections, Helleborus niger injectons and the nebulizer version. There is a good book on it called "Mistletoe and the Emerging Future of Integrative Oncology". Germany and Switzerland use this method intensely. I invested in a live blood microscope and discovered after a Pet scan I lost all my white blood cells but they are coming back slowly. So the radiation is a necessary evil and it will take a lot to recover from it in itself. I also do a lot of IVs at the holistic center like Vit C. The Pet scan immediately caused my ankles to swell which never had I had that. They tell me it is not the radiation but I wonder. So far the best pain meds that work for me is 2 Advil and 1 Tylenol which I was a 3 times a day and down to 1 time a day. But this throat urge to cough when I drink is getting to me. It restricts my intake that I can't afford. Someone wrote Marshmellow Root Tea. I will get that in and try it. I have decided never on Chemo and was confirmed with my holistic doc for radiation but never chemo as my heart rate is too high although blood pressure is always good. How does that work?

Jclassey
I know how frustrating it is and what you are experiencing having been there just weeks ago. J believe I have finally turned a corner. That awful throat pain after trying to eat would be me to tears and bouts of anxiety and depression. I am now over 14 weeks post radiation and on very day of 14 weeks I finally had a day where I did not need the feeding tube. (I too caught Covid just after Christmas which was a setback.) Yesterday was day 2 where I got by without feeding tube and I pray to god i am hopefully done. My throat is not perfect still sore here and there and eating does aggravate it especially anything coarse. I do still need lots of water to get to swallow because of dryness.
I hope you get there soon. My only advise is eat very soft foods and try to be patient by keeping busy if you can. For me daily walks, light exercise and home projects were key to filling my time.

Has anyone here had their throat pain increase again after starting to get better?
2 mos after finishing treatment I got Covid and throat got really bad again. Now it’s been bad for almost 2 months. Ent said that I have an ulcer in my throat . Pet scan was clear.
Rad/onc says it will get better…. Nothing seems to help healing…..