HPV Tonsil cancer: I'm very nervous about chemo and radiation

@lizzyj58 My oncologist doesn't do feeding tubes and so I didn't get one. They use the Boost method and it works. I bought a Ninja smoothie maker and some large silicone straws to make my own. I guess it depends on who you're being treated by for the feeding tube? The surgery was bad, but I was able to push through it. The radiation treatments themselves are not tough. It's the end of Radiation when it hits you like a rock. The radiation is accumulative and so it builds up. You lose your appetite and have to force yourself to eat. Food is horrible and it tastes metallic. That lasted about a week? Boost made this doable. Then I started eating normal food again, but it always had to have a wet component. However, the food has no taste at first, then at about two weeks, I had a hint of the tastes on the first bite, then it goes away. I had two cheeseburgers about 1 ½ weeks out, I drank a lot of water with them. I lost about 15 pounds and now I'm about staying the same at 201, from 218/220.
Neck stiffness is another issue. It's called radiation fibrosis and I'm constantly stretching it. I gargled with 3 things. Salt and Baking Soda/ Water; Salt and Water; L-Glutamine Powder and Warm Water. The L-Glutamine was very throat soothing. I also had hot Green Tea in the morning which was also very throat soothing. I use Act mouth (kids apple) wash and Xylitabs at night. Water by the bed for the dry mouth. The mornings are usually good for me, and the evenings things start to go south. I'll be a month out on Wednesday (10-22) and I'm doing ok compared to a lot of others I've read their stories. I didn't miss a day at the gym accept when I had my drain tubes in ( a few days). So, the biggest surprise for me is how long the recovery is, I'm not a patient person. I'm getting better everyday though and that's a positive. If you have a Chinese Restaurant near order the egg flour soup in the beginning it helped.

@harleytiger I'm a few days past my 2 year an from tongue cancer surgery. It sounds like you are healing well! The best I can tell you is that healing, eating, taste, etc is slow...very slow...extremely slow! The neck stiffness come and goes. I also have times when swelling in my mouth and throat are an issue. Then I will go weeks,with no issues. I've learned that when problems come up they are not permanent. So don't be discouraged if you have times when your throat is tighter or mouth is drier....it will pass. I was told that by other patients and its true. Good times get longer and bad times are shorter.
I triggered my taste buds with salty, sweet, and sour to get them to relearn their job. Dill pickles, lemon slices, cheap candy suckers all helped trigger taste and saliva. I would drink water and touch them to my tongue. Sometimes it triggered nerve pain on my surgical side. But my saliva is pretty much normal now. Taste, too. Good luck to you. Sandy

@lizzyj58 I was in your same boat about 2 months ago. It's a rough journey for sure.

18 years ago I had stage 4 tonsil and tongue cancer with a few lymph nodes involved. I had surgery ,Dr couldn’t quite get it all. Then I had targeted radiation therapy and chemo. I did both at same time. I did have sores in my mouth, I used lidocaine viscus constantly, it numbs the inside of your mouth. I never threw up , doctors have wonderful medications to take that feeing away.i was given 1to2 years to live. So 18 years later I am fine. When I was diagnosed I wanted that crap out of me 2 days later it was. Probably you would’ve find one person on here that wasn’t afraid. I was more afraid after treatments of cancer coming back.Whatever fear I originally had was wiped away watching both my daughters get married, watching 1–2–3 grandchildren come along. There are ups and downs as in everyone’s life. I don’t understand what an alternative treatment would be. You have cancer growing in your body everyday. This is your decision and your life. My husband is a doctor, if his patient refuses to do what he says you have to do to save your foot, he also would not waste his time with someone who has a death wish. You are very ill . You need to call your doctor and. Get an appointment so so can live. No one makes that choice by you. You will have to explain to receptionist that you need help and you want to live, because they might not want to give you appointments. If you can do that then we can text and I will go thru it with you. Get the cat scan and see if cancer has moved. But we will get thru that.

@mrsfootdoc one more thing I was told by a respected physician that unless you are dying absolutely don’t get a feeding tube. Once you go on it’s hard to get off. I had a gastric bypass year’s before. So I don’t even have a stomach. I was able to eat mashed potatoes with gravy. And lots of other recipes ! Text me if you need more information 312-750-9889

Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. The Good news is HPV 16 is a very treatable cancer. I am sure the earlier you start treatment the better. Trust me I had not visited a Doctor in 20 years and I found it hard to trust them but a good Oncology Doctor that treats alot of HPV cancer should be able to help guide you to the correct and proper care. I urge you not to keep waiting.
If this is any help here is my story....I am 58. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 18 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up. You got this. Trust in your Faith

@jonesja I keep reading your story for inspiration. I'm still only 2 months out and still feeling the effects of everything. I hope I land on my feet like you did.

@harleytiger I am happy to hear you are done being zapped. Many of us had 35 rounds or seven weeks of radiation. Those last two weeks did the most damage to me and I'm sure others would agree. It's like making toast and then watching it burn instead of popping it out.
The thick saliva will likely hang around for a few months as you heal. Lovely I know, right?
Your nose runs, common thing for many of us. Some say it is a salivary gland re-route. I have a friend who leaks saliva from a small fold in the neck when she eats since radiation. I have the runny nose while eating all these years out of radiation.
Your neck will be stiff. You likely will have brief nerve pains in the neck, shoulders and arms. Be careful eating dry foods, breads, rice, white meats. Lack of saliva. Most issues go away in a few months while others might hang around for years or forever. The good thing is you are on the mend. You got through what very much the thought would scare most people.
Good healing and welcome to life post-cancer.