Recovery from Right Tonsil Cancer

GTroop

Today was my last chemo session (Cisplatin) and tomorrow is my last radiation treatment (2/4/26). I also had Stage 1 breast cancer in the beginning of 2025! When those radiation treatments ended I was so excited to ring the bell and be done. Now I feel everyone around me is disappointed that I'm not feeling celebratory, but it just got really bad yesterday!

I have been able to eat soup and smoothies until yesterday and was told that that is extremely rare and that I am doing fantastic for weeks. Then my body kind of caved to the radiation yesterday. I am relying on the PEG tube completely for the last 2 days and feel a lot of pain and severe difficulty swallowing.

My oncologist is telling me very dark things and my radiation oncologist is much more upbeat about the inertia effect of radiation and my recovery. I need to get this PEG tube out. I hate it, but also really appreciate it now that swallowing has become so painful. I've had major problems and pain with the G Tube and have barely used it once a day until two days ago. When did you get yours out? Did you have pain with it for weeks after surgery?

For reference, I am in my 50s, was in great shape going in. I gained 10 lbs. on a fantastic trip to New Orleans the week before my treatments started. I am now 10 lbs. under my normal weight (which is a healthier weight for me anyway) and 20 under my starting weight.

Please share recent accounts about your recovery and what you went through with it. I haven't talked to anyone going through this same cancer. There are 3 masks in the radiation room and the other two people, "haven't started", when I asked about them.

wbcgaruss

Hello, GTroop, and welcome to the CSN H&N discussion forum.My oh my, my heart goes out to you, breast cancer last year, and then tonsil cancer this year, praying cancer stays away from you from now on.

I am reading your first paragraph, and first off, let me congratulate you on getting through this difficult treatment regimen. It looks like you were doing really well, but then things went south recently.

Don’t let people around you seeming disappointed in your progress hold you back, you will find with this head and Neck cancer treatment, there are many ups and downs, and you just hit a down time.

You will find H&N cancer recovery a roller coaster of ups and downs till you hit a settling or leveling off later on in recovery.

You will, over time, find out now who your true friends are.

I can’t comment on breast cancer treatment and recovery, and since it was stage 1, maybe it was really not too difficult with few side effects.

But you will find Head and Neck cancer treatment and recovery is much different. Did you get the standard treatment for H&N cancer, 35 radiation treatments with chemo at least several times, usually in the beginning, middle, and the end. The treatment is difficult for sure, but you are just getting to the hard part now. Post-treatment recovery.

In your second paragraph, they are correct you are lucky to be doing so well so long but every case is different. You say your body caved, yes, to the treatment; it just caught up with you. I am relying on the PEG Tube-Yes, and be glad you have it and don’t be in a hurry to get rid of it because it is your lifesaver and friend. When you can maintain body weight for 2-3 weeks by mouth, you can then consider getting it out.

And you say you are having a lot of pain. Do not put up with it; your care team should provide or give prescriptions for all the pain meds you should need. You should stay ahead of your pain in this kind of situation (H&N treatment Recovery). That means taking pain meds on a schedule, whether you have immediate pain or not, such as every 4-6 hours or whatever works for your situation, but stay ahead of your pain.

You say your oncologist is telling me very dark things; I would say probably the truth, and to be prepared for a difficult time in recovery. I am going to post a previous excerpt using your name about H&N treatment recovery, it saves me typing...

  Hello Troop, hang in there and be patient. Please keep in mind recovery from this is a long process, it's not like a bad cold and in 2 weeks you feel great again. Recovery from H&N treatment is a Long-Haul Process Recovery from this is measured in weeks and months. Did I mention, Recovery from H&N treatment is a Long-Haul Process and is measured in weeks and months. It is a slow process but a sure process. You are still early out of treatments. It is said that we are still cookin' so to speak from the radiation for about 2 weeks after treatment is finished. Every person's cancer regimen and treatment and recovery for H&N treatment are all different. From my experience and many others I have read about, once treatment is finished recovery from treatment till you start feeling better is usually 6-8 weeks. Full recovery can be 6-8 months or up to a year or more. I still remember my Radiation nurse telling me in a pre-treatment meeting that "I might as well figure a year off my life till I get through this treatment", meaning till I go through treatment and pretty much fully recover it will be about a year. I never forgot that from back in late 2012, and she knew her stuff from dealing with cancer patients and she was spot on with her assessment. You will notice improvements a little at a time just be patient. Do whatever you need to do to get through each week, each day, each hour, each minute, and one morning you will wake up and think to yourself "By golly ya know I feel pretty good today, in fact, better than I have for a long time.

And below is one more for your information it was addressed to a member named Tracy. Please note at the end it talks about the thickening saliva from radiation and the salt rinses to use and tips like sleeping in a recliner. I am not trying to upset you or scare you with this info just prepare you. Be prepared for the worst and hopefully your recovery will not be too harsh.

  Hi, Tracy. Brace yourself as you go through this treatment, it is brutal and can be quite difficult. When I say it is brutal and difficult, it can be but then some go through this with relatively light effects. The treatment you are going through now is moderately difficult but the worsening effects are the hard part and the recovery period after treatment is over is the more difficult part. So everyone's cancer and treatment are different so you won't have the exact same results. I am glad the nurse gave you meds, that mask can be challenging. I can say there are many others here who have gone through this treatment and have made it and so will you. it can seem daunting at times but just ask questions and someone will have the answer. I would say the next difficulty you will encounter soon is from the radiation your saliva will get very thick to the point of being even stringy. One way is to spit a lot and for worst cases you can get a suction machine but the best thing to do is stay ahead of it by rinsing with salt and baking soda mix as often as necessary to keep it cleared and to keep your mouth feeling better. I would recommend sleeping in a recliner during treatment and if you don't have one sleep in a propped up position. Laying down sends the thick saliva to the throat causing coughing and choking. Make sure to eat plenty because your system needs the calories to recover and hydrate as much as you can. If you have any pain make sure your care team gives you plenty of meds to get you through this and stay ahead of the pain, take the pain pills on a schedule if you have pain don't wait till it hurts really bad. Rest as much as you need to this treatment will exhaust you but stay as active as possible. These are just some suggestions for now feel free to ask questions as they arise. I am going to post the rinse mix recipes for your mouth below plus some other info that may be helpful, please look it over-Take Care, God Bless-Russ

And remember NEGU (Never Ever Give Up)

Mouth Rinse Recipes to Use During Chemotherapy & Radiation Soda and Salt Mouth Rinse1/4 teaspoon baking soda
1/8 teaspoon salt
1 cup of warm water Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda. Soda Mouth Rinse: A Good Rinse for Before You Eat1 teaspoon baking soda
1 cup of warm water Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture. Saltwater Mouth Rinse1/4 teaspoon salt
1 cup of warm water Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt. Salt and Soda Rinse for Gummy Mouth Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."1/2 teaspoon salt
2 tablespoons baking soda
4 cups of warm water. This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out. Peroxide Rinse for Crusted Sores If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.1 cup hydrogen peroxide
1 cup water or
1 cup salt water (1 teaspoon of salt in 4 cups of water)If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.? Use a non-peroxide rinse for two days, before returning to this mixture.

So with all that said, I will try to add more later, but this is enough for now. If you have specific or general questions, please ask, or anything you can think of; no question is unreasonable when dealing with H&N cancer. I also have some informative and inspiring videos I can share.

I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.

Our Motto Here is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

MarineE5

GTroop,

Congratulations on ringing the Bell on your treatments. I am sorry you are dealing with your discomfort issues, each person reacts to the treatments differently. As one member stated years ago, some run to the finish line, others walk and some crawl but get there somehow.

Russ gave you a lot of information to take in. He did mention some very key points I would like to add to. Since you are in the recovery stage, I will mention those. The time we leave treatments as mentioned we "Cook" from the treatments. If you cook a chicken in a microwave for so long, then remove it, we place it on the counter to rest, but it still cooks. That is an example of what we go thru with the Radiation. The time frame of feeling better is almost the same as the amount of time spent in treatments, at least that is how it was for me.

The Baking Soda and Salt solution is very helpful and I am an over achiever so I would use 1 Tablespoon of Salt and 1 Tablespoon of Baking Soda in 1 Quart of room temperature of water. Mix it up and had a used plastic soda bottle to put some in to carry around with me during the day along with regular water, both at room temperature. I rinsed and gargled as often as 20-30 minutes to ease any discomfort I felt in my mouth. It also helped with the mucus a bit. The Nurses had suggested to do this 3 times a day, but as I mentioned, I over do things. My Radiation Oncologist was surprised when he asked me if I started taking the pain medicines yet in week 5 that I hadn't. He suggested I start as it would catch up to me and he was right.

Another thing to be aware of is Fatigue, it happens to most of us, there has been members that bounced back quickly and ran Marathons shortly afterwards. Again, each of us reacts differently. My RO stated that Fatigue could last for up to a year, but not everyone has that problem. Just know that it is a process. You will know you are on the way out of fatigue when you have a good day then 2 bad days, they eventually 2 good days then 1 bad day with energy until you are almost completely back to normal.

My Feeding Tube was removed about 2 1/2 months after treatments ended and I was able to maintain my weight by eating orally once again. As Russ mentioned, if you have any discomfort or issues with your feeding tube, contact your medical team as soon as possible, that is why they are there.

One suggestion from my Radiation Oncologist was to make sure when getting bloodwork, is to have our Thyroid levels checked. I isn't a matter of "IF" our Thyroid will fail, it is a matter of "When" it will fail. Mine didn't fail right away. Taking Levothyroxine now for that.

My Best to You

wbcgaruss

Thanks for adding in MarineE5.

You have always given good advice and well spoken, so easy to understand.

Glad to hear from you and to know you are still active.

My best to you

Take Care, God Bless

Russ

GTroop

https://csn.cancer.org/discussion/comment/1726107#Comment_1726107

Hadn't heard about the thyroid issues! That sucks. I have been maintaining my weight, even gained a pound in the last week… no idea how. Drinking my Ensure today, will just walk it back as quickly as I can. Thanks for the info!

MarineE5

You're welcome Russ and GTroop,

This site is full of knowledgeable folks and it makes for great team work.

My Best to Both of You and Everyone Here