Throat & Neck Cancer - HPV 16+

Sportsfan957

New post to share my story. Age 59 year old male, very overweight. I was diagnosed with throat and neck cancer hpv16+ Fall 2022. Started in my right tonsil and spread to my lymph nodes on right side of my neck. Doctors provided two choices for treatment they said about equal outcomes. First choice was radiation and chemo and second choice was surgery and possibly follow-on radiation therapy and maybe chemo too depending on the results of surgery. I went with the latter as was worried about the side affects of chemo given my other medical issues.

Surgery was on Nov 28th 2022. They found total 5 lymph nodes cancerous in L2-3. L1 and L4 were clear..in total they took out 31 lymph nodes to check. Opted not to do the feeding tube…First couple weeks were rough from the pain with days 8-9 the worst. Had some nerve issues in being able to raise my right arm but that has resolved itself many months later.

Based on the surgery results, doctors recommend 6 weeks radiation treatments but no chemotherapy. A week after starting radiation treatments, I was involved in a horrible accident falling from a tall ladder while cutting tree branches. Broke my pelvis requiring plates and screws, fractured my spine requiring spinal fusion on 6 vertebrae and busted a number of ribs. I was in the hospital for one month and confined to a wheelchair with a thoracic brace.

After getting out of the hospital, doctors restarted me on 6 week’s radiation treatments. This time I was smart enough to get a feeding tube installed as I didn’t know how much more pain I could tolerate.

This past Monday I rang the bell and the next day doctors cleared me to get out of the wheelchair and remove the thoracic brace. In total, from the start of this long ordeal until radiation finished, I lost 60 pounds, which I am sure a lot of is muscle atrophy from being confined to a wheelchair. I have had a good attitude throughout this process until this week. For some reason I just thought things would turn back to normal, but my throat or back have other plans. Turned to this site for guidance how long it would take for my throat and mouth to recover and now in process of resetting my expectations. I will follow up with a few more messages in the coming weeks/months how my recovery is going…I think it is going to be the hardest part because I just want my life to return to normal.

wbcgaruss

Hello Sportsfan and welcome to the CSN H&N discussion board. My goodness, I thought I was enduring a lot just with cancer treatment but you certainly got the maximum test of mind body, and soul with the combination of cancer and a serious accident you went through. If you had a good attitude throughout this process as you say you did well and don't stop now, you will get through this and things will get better, much better.

Also, congrats to you for opting for the feeding tube, it makes the whole process easier and eliminates any problems getting nutrition and meds in. And when you don't need it anymore they just pop it right out.

Let me tell you about recovery from cancer treatment. The treatment itself is not too difficult but now the recovery is dealing with the effects of the treatment that got rid of cancer and the effects it has on the body.

Let me just tell you recovery from radiation and or radiation and chemotherapy is a slow process measured in weeks and months not days and weeks, such as having a cold or flu or something. If we have a bad cold let's say and we treat it and it resolves in a week then we pretty quickly start feeling better. This is not so with cancer treatment. But you will get better just in a slower process and it just requires patience which I would think you have because of what you went through with your accident. But with the two issues combined, I can see you are getting tired of it all and just want to get through it all. Depending on your particular case recovery could be longer or shorter but you should notice improvements in 2 to 8 weeks and from there on up to a year. Below is a quote from the American Cancer Society page and a link to it.

https://www.cancer.org/cancer/managing-cancer/treatment-types/radiation/effects-on-different-parts-of-body.html

It's very important to remember that every person reacts differently to treatment. Any side effect you might have depends on the type and location of cancer, the dose of radiation being given, and your general health. Some people have few or no side effects, while others have quite a few.

How long do side effects last?

Remember that the type of radiation side effects you might have depends on the prescribed dose and schedule. Most side effects go away within a few months of ending treatment. Some side effects may continue after treatment ends because it takes time for the healthy cells to recover from radiation.

Side effects might limit your ability to do some things. What you can do will depend on how you feel. Some patients are able to go to work or enjoy leisure activities while they get radiation therapy. Others find they need more rest than usual and can’t do as much. If you have side effects that are bothersome and affecting your daily activities or health, the doctor may stop your treatments for a while, change the schedule, or change the type of treatment you’re getting. Tell your cancer care team about any side affects you notice so they can help you with them.

Early and late effects of radiation therapy

• Early side effects happen during or shortly after treatment. These side effects tend to be short-term, mild, and treatable. They’re usually gone within a few weeks after treatment ends. The most common early side effects are fatigue (feeling tired) and skin changes. Other early side effects usually are related to the area being treated, such as hair loss and mouth problems when radiation treatment is given to this area.
• Late side effects can take months or even years to develop. They can occur in any normal tissue in the body that has received radiation. The risk of late side effects depends on the area treated as well as the radiation dose that was used. Careful treatment planning can help avoid serious long-term side effects. It’s always best to talk to your radiation oncologist about the risk of long-term side effects.

Also here is a link about radiotherapy side effects you may experience and how to deal with them including the thick saliva.

https://www.macmillan.org.uk/cancer-information-and-support/head-and-neck-cancer/side-effects-of-radiotherapy-for-head-and-neck-cancer

Also, everyone and everyones case is different and unique as to how large their cancer was and the area that it covered which would determine the amount and strength of radiation you would have gotten. Also, everyone recovers at a different pace unique to their situation.

I don't know how you feel now but you are probably tired and from your comment about your throat it is probably sore and you may be experiencing dry mouth and possibly some pain. Usually the worst problem I feel is thick mucous in your mouth. Thick to the point of being stringy and gagging you. If you can for now sleep and rest in a recliner because laying down sends the thick mucous to your throat causing problems. If you don't have one stay partially propped up in a bed. Eat if you can and keep your swallowing going. You can forget how to swallow if on a feeding tube. I had a speech therapist assigned to help watch over me in the process and she gave me swallowing exercises to do. Some folks feel that they want to avoid a feeding tube to keep the swallowing function going but many of us get to the point where we just can't swallow anymore for a while either due to swelling or pain or both and that is where the swallowing exercises come in to keep that function active and working. Some have refused the tube only to get it later because they just couldn't swallow for a while.

Thick mucous, you will probably have thick mucous for a while so stay ahead of it by spitting it out and rinsing as often as needed with a baking soda and salt recipe. It keeps your mouth cleaned out and it helps you feel better and refreshes your mouth from bad tastes, etc.

Pain, if you have pain work with your doctors and make sure you get pain meds to get you through this, and stay ahead of it. You may need to take pain meds on a schedule, say every six hours but don't wait till you have bad pain, and then take meds. Eventually, you will not need them.

Nutrition, get plenty of nutrition in preferably by eating but if that's not possible right now make sure you get plenty of calories and nutrition, and hydration through your feeding tube. It is important for your recovery. You may want to get some Boost VHC (Very High Calorie) to add in for now it has 530 calories per 8 ounce serving. I will post some recipes below for smoothies, etc.

These are just some suggestions for now feel free to ask any more you may have. i would like to add that prayer always helps during times like this.

I am posting the salt and baking soda recipes below and the recipes and smoothies mixes.

Wishing You the Best

Take Care, God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy Radiation

Soda and Salt Mouth Rinse

1/4 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 Eat

1 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 Rinse

1/4 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.

Sportsfan Welcome

The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain food, I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.

Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.

Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--

Deb,

So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding

3/4 cup half & half cream

1/2 cup of water

1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!

Karen

These Recipes and Tips Are From Debbiel0 on CSN H&N Section

And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--

• Coffee cream ( 18%) 1 cup 480 calories
• Coconut milk 1/3 cup 150 calories
• Greek style yogurt 1 cup 270 cal
• 2 tbsp Ground Flax seed 100 cal
• 3 tbsp Hemp Hearts 170 cal
• 1 tsp nut butter 100 cal
• 1 tsp honey 100 cal
• banana 80 cal.

I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.

Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)

Use honey as much as you can in tea or coffee, or just in warm water.

I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.

Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.

I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!

Split pea soup and baked beans with honey are great for calories..

The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)

Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.

I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.

Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!

Also Here Are A Few More Postings For Weight Gain From The Forum

Flyinhigh says:

High calorie

I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).

Grandmax4 says:

calorie

I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious

Drivingdaisy says:

Drinks

Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.

Suzj says:

if you want to mix it up..

If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories

Here's my radiologist's recipe. You can change the flavors by finding a substitute for peanut butter, using a different fruit, or a flavored yogurt. These are mixed by my better half in a Vitamix machine.

1 cup ice cream

1 cup greek (or any full-fat) yogurt

Pack of Carnation instant breakfast

1/3 cup peanut butter

1 banana

Milk to thin to the right consistency

In Closing:

I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.

Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.

Be patient and Eat, Eat, Eat.

I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ

Sportsfan957

https://csn.cancer.org/discussion/comment/1705865#Comment_1705865

Thanks wbcgaruss for the feedback and encouragement. Yes, after the surgery I had to learn how to swallow again and was amazed how hard it was to get everything working together. Even weeks after my surgery, if I was drinking something and not concentrating on swallowing, the fluids would come out my nose. Definitely feeding tube is the way to go as it is still too painful to swallow and my throat swollen to get food down from the radiation treatments. I hope within 1-2 weeks post radiation I can start eating soft foods. Just on Day 4 of recovery and don’t see any improvement yet. Have come to realize recovery is the hardest phase as my patience is waning. I will look into those high calorie meals as I can only put so much volume thru the feeding tube or I feel very bloated.

wbcgaruss

Very good. See if your doc can set you up with a speech therapist to help and monitor you on your journey. They may even give you a swallowing test, I have had several. The speech therapist can give you swallowing exercises and help with anything else they see necessary to your case. Please you need to be patient, work at whatever you can do such as swallowing exercises and getting in enough nutrition and liquids as you should, and let your recovery take its course. Your recovery will not look exactly like anyone else's story. I couldn't eat or drink for 2 or 3 months, literally could not swallow because my throat was too swollen up to let anything pass. There are those on here that waited longer or had shorter span times till they could eat. But I kept trying now and then to eat or sip some coffee and one day just a little went down and then a little more and it will be like that. Your soreness will be gone someday and swallowing and eating will slowly resume. Some say this recovery is to be taken in baby steps just a little at a time in small increments. This is the hardest phase, recovery from the treatment. Again be patient. I think it's the fact that you had a double whammy on you also. Your recovery from the fall is really similar in that your body has to heal and it takes a certain amount of time no matter what your mind wants. You'll get there.

Videos to help you below--and keep you busy--

Take Care, God Bless-Russ

Role of the Speech Therapist--

https://www.youtube.com/watch?v=uhwFg8oyGMY

Use it or lose it--

https://www.youtube.com/watch?v=Qaip9BMnO0c

Example of swallowing exercises--if you get with a speech therapist she will have you do exercises for your situation, I was doing between 3 and 5 exercises at certain times mainly dealing with swallowing.

https://www.youtube.com/watch?v=aZTXHwmOK6Q

You may at some point get a swallowing test-easy to do--

https://www.youtube.com/watch?v=dRvYL_TAtKI

steven59

Sportsfan957

I finished my radiation middle of January this year and am still 30 lbs underweight. I chose the same route as yoy surgery then radiation for hpv+ SCC in tonsils and lymph nodes on both sides. I'm just, just beginning to get some salvia back 4 months later. The therapist that taught me the exercises to get thru radiation without a feeding tube also pushed me to be pro active with the homemade mouthwash, xyli melts, ACT chewing gum, anything to help. Dr's and therapist's all reiterate that recovery can take a full year so I guess we just have to be patient and stay positive.

Sportsfan957

Thanks to those who have provided feedback what to expect during recovery.

I am now two weeks post recovery from radiation treatments and wanted to share my progress to date. The burns on my skin around the neck are healing nicely. It is still very painful to swallow, though I am just now being able to tolerate swallowing a little bit of applesauce sauce, so that’s progress. Not taking any pain meds for over a month now as I didn’t like how the OxyContin was blocking me up even with stool softener. Maybe if I was on pain meds I could tolerate to swallow liquids or soft foods. Been on the feeding tube for over a month now and hope to transition to soft foods and liquids over the next week. Still have sores in my mouth and tongue but hope that will start to improve soon too. Seems symptoms in week 2 were recovery slightly worse than week 1, but I think I have turned the corner now in starting to improve. No change in the mucous and stringy saliva, though if I I can start swallowing it instead of spitting it into a cup, I will sleep better and not need a spit cup around me 24x7. Overall, still pretty miserable after 2 weeks of recovery but feeling positive things will start to improve from here.

wbcgaruss

Sportsfan thanks for checking in. As you have noticed for a couple of weeks after treatment stops things actually get worse before they get better. But as you say you have turned a corner and are improving slowly. And slowly is the word because H&N recovery is measured in weeks and months. But hang in there because in 4 to 8 weeks you should see a considerable difference. Congrats on being off the pain meds and starting to get a little applesauce down. Eat what you can and try many different foods. Butter or gravy on everything helps it slide down. Mashed potatoes and noodles go down pretty easily. You are on your way just a little at a time, just take small steps in whatever you do but keep moving forward and stay positive. Time goes quickly and you soon will feel far better. Don't rush getting the feeding tube out, be sure you can easily maintain your weight by eating for 2 weeks before considering removal. I am so glad for you, your progress, and your upbeat attitude. Congrats on finishing treatment and your continued progress.

You're on the Home Stretch now!

Wishing You the Best

Take Care, God Bless-Russ

Let's celebrate your progress---

Sportsfan957

New update at 4 weeks post radiation treatment. Week 3 saw slight improvement in symptoms from treatment as throat continued to hurt to swallow, was swollen and still sores in mouth and tongue. Stayed on feeding tube all of week 3.

Week 4 saw moderate improvement in ability to swallow as had less pain, etc. Towards the end of Week 4 I stopped using the feeding tube but most of my calories coming from liquid protein drinks, some yogurt, etc.. Sorbet has been a nice treat as it doesn’t trigger the mucus response that ice cream does. My main issue is that I still can’t taste most foods and having trouble finding the motivation to eat. I know I am supposed to keep my calories up so I don’t drop weight or they won’t remove the feeding tube in a couple weeks, but just strange not having the desire to eat, because that wasn’t me prior to the cancer. Other symptoms include thick stringy mucus, loss of facial hair around neck and chin area and still dealing with fatigue.

Going in for my first throat/neck CT scan on Friday following treatments and PET is supposed to be scheduled after that. Praying for good news on that front.

wbcgaruss

Sportsfan, so glad you are seeing some improvements in your condition and at the end of week 4 are eating to support nutrition and keep weight maintained.

I went through a period also where the taste is just not there and it is very difficult to eat so I know where you are coming from. You will not have a desire to eat and in fact, have to just force enough through to maintain your weight and caloric intake and get no enjoyment whatsoever from it at all. You are force eating to survive for a time period till you improve and your taste starts coming back to whatever your post-treatment level is going to be. As far as getting the feeding tube removed I am well aware that we don't like to have them in. But I caution people on getting them out too soon. Don't set a time like 2 weeks from now to get it removed, only when you are confident in eating by mouth and have maintained your weight by eating for 2 weeks or more. If it remains in a little longer to be safe then let it be that way so when it is removed you have no worries and you are comfortable.

The stringy mucus, loss of facial hair around neck and chin area and still dealing with fatigue are all a continued part of recovery. The stringy mucous will get less thick in due time. Your facial hair will come back but it may be patchy and not full, not a big deal. Fatigue is big in this treatment and it is just going to be a long time till you get your energy back. Your body has gone through a major assault.

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 this is measured in weeks and months.

Wishing You the Best and prayers on your upcoming scans.

Below is a little thing I wrote up previously about H&N treatment recovery, hope it helps with a little perspective.

Take Care, God Bless-Russ

Hang in there and be patient. Recovery from H&N treatment 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.

Sportsfan957

Update at 6 weeks post radiation treatments. Got my feeding tube removed during week 5 and have already gained a few pounds back. Swallowing still hurts some but soft foods ok. Stringy mucous is gone but saliva glands not producing much saliva so every bite of food involves drinking milk, water or other fluids. Still have sores on my mouth and tongue but gradually getting better each week.

Had the CT scan done for throat and neck area and results came back great. Doctor scheduled PET 3 months out as said my body still has too much radiation in it to do it now as results come back false positive. Overall at end of week 6 starting to feel normal again and I hope by week 8 I can report no nagging symptoms.

wbcgaruss

Sportsfan, congrats, congrats, congrats, on your post-treatment status and improvement. I am so glad for you that you can eat and gain weight and also have gotten your feeding tube removed. Hopefully, your saliva will continue to improve. CT scan is clear and you are seeing gradual steady improvement, what a wonderful place to be in and be finished with treatment and headed to getting better and better and fully recovered. We celebrate with you.

Take Care, God Bless-Russ

steven59

Your recovery sounds similar to mine. That you're putting on weight is great news and I'm happy for you. sores will heal and taste does return, although not as quickly as as it did after surgery. Hang in there, improvements are gradual so patience and gratitude are things I have to remind myself.