Right side tonsil cancer spread to 2 right lymph nodes

Hello Shari and welcome to the CSN H&N forum, of course, the place we would rather not be, but it is a great help for us all. So sorry you are going through this and yes the pain can be difficult to deal with among other things. I understand from reading many posts over the tears that a tonsillectomy operation is one of the most painful and difficult operations to handle as far as pain mostly I think but it may also be overall effects. And on top of that being an adult they say is much worse as say a child getting one for some reason.

I am not a medical person by any means, these are just my ideas and opinions.

I am wondering why they couldn't just get enough of the cancer the first time and just be able to mop up errant cancer cells with chemo and radiation. I had a small spot on my tongue and my ENT said during the operation he would remove what he thought was the necessary amount of tissue and send it to the lab and they would check it right away and if there was still cancer there he would take a little more and when the lab told him he had clear margins, no cancer cells seen, he quit and sewed me up. By the way, your tongue looks odd after being operated on and having stitches in it. So I would be under the impression that an operation you had could be done the same way, checking for clear margins and stopping once they had them thus only going in one time. I understand every situation is different so you may want to ask.

Very many H&N situations these days are handled with chemo and radiation exclusively. But in cases of operating then chemo and radiation are then used as a follow-up to mop up errant cancer and cells in the area that can't be seen.

If you can ask your doctor about the option of chemo and rads rather than the second operation as an option weighing the risks and benefits. There are leftover effects from both so there are some not-so-good effects from both treatments but they get rid of cancer and some people only get mild after effects to deal with. Again every case, each person is different.

And if you are really unsure and feel comfortable doing it get a second opinion from another doctor if possible. I know this is hard to consider mid-treatment, but an option.

As MG said before starting radiation if you are not carrying some weight now, pile it on, you may need it. Do it just in case. Each case is different on here but most pose difficulties eating during treatment. Also as a drink to consider is Boost VHC (Very High Calorie). I never found it on the shelf in stores only regular boost so I bought it online on eBay, but it is available many places online. I will post recipes below for weight gain.

But let me just say as far as pain no one going through this horrific treatment should be limited in their pain medications or not have their pain kept to as minimum as possible. Your doctors should respond to your needs and be sure you have enough and are pain-free as much as possible, we suffer with enough else through this.

Also, let me say that if you are having steady regular pain with this you have to stay ahead of the pain and keep it under control. That means if you have constant pain don't wait to take meds when it is bad or you start to feel it again, get on a regular schedule of say taking pain meds every 4 hours, or 6 hours, or whatever works for your particular situation, these days Fentynol patches are available and many other meds. And if your prescription is not enough for a schedule then call your doctor's office, often if necessary till they address your situation.

Just because there is an addiction crisis in the United States is not your fault or mine and I think recently it seems like some docs are holding back in response to it. Can't say for sure.

Wishing You the Best

Take Care God Bless-Russ

Recipes for smoothies, etc, are below.

Shari Welcome

To the forum glad to have you. I too ended having a small nodule on my lung and liver but they are just being watched for now and I believe unless they start growing nothing will be done. My sister had one for years they were watching and it finally started increasing in size and I believe they used a cyberknife on it and it is gone. I would imagine your case is similar with a watch and see approach.

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 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

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

I agree. I am grateful, thankful, and blessed. After my last cancer episode, I am grateful every morning when I open my eyes and see I am at home and didn't wake up in a hospital room, Hallelujah.

After you go through this brutal H&N treatment and survive cancer, the smallest things can bring appreciation, satisfaction, and Joy. You find satisfaction in the little things in this world. Day-to-day normal things are somehow relegated to amazing things, and actually, they are, but now we see it before we looked right past it.

Take Care God Bless All

Wishing You the Best-Russ

No Gal, not my first go-round I have had three bouts of cancer. The first was throat cancer discovered in late 2012. That was a major cancer deal. The next was about 5 years later a spot on my tongue. Lost a bit of my tongue through surgery but not a big deal. And in 2019 lymph cancer in my neck which was a major deal with complications and I spent 36 days in the hospital and 10 days in a rehab hospital till I got home.

You will find there are a number of people on here who have had multiple cancers. But they fight on and keep going.

You can check out my profile, and in fact, read anyone's profile on here if you click on their picture or name, basically the little emoticons with everyone's name. Just click on their picture, click view profile and you are on their profile page and if they have filled any info out you can read their story. You can add info about yourself on your profile page. And add a picture if you like. Just click your picture in the upper right of the page and click edit profile.

Have a good one.

Take Care God Bless-Russ

DCX welcome to the forum, sorry you ended up here but it will be good, you can get help here.

First off I would recommend you check out the Superthread at the top of the page. You will find loads of helpful; information in there. Sir, you are now hitting the tough part when you get no taste from the food you are right it is difficult to eat. You are right it is a chore because no matter how tasteless and tough it is to eat you have to force eat enough calories every day to maintain your weight. What you may want to do is eat, no I mean drink a lot of your calories. I will post below a listing of high-calorie smoothies you can make and other recipes. It is easier to force high-calorie liquids through than chew and swallow regular food and easier to maintain your weight. Also in the meantime, you can buy Boost Very High Calorie-530 calories in an 8-ounce serving. A lot of calories in 8 ounces. Have your doctors mentioned the possibility of a temporary feeding tube, I had one as well as many others on here. Hopefully, you can hang in there and get through this. You are right about all the above it can get you down, it is draining, it mentally wears you, it's hard to stay positive and you feel like crap. You just have to set your mind and heart on finishing this treatment, every one of them because it is important. You tell yourself that you will do this no matter what. The toughest days are ahead. It is not going to get better till you finish treatment, and then the treatment effects really don't just stop and you start feeling better. They say you are still cooking so to speak from the rads for a couple of weeks and then after that, it may be several more weeks till you see improvement. But it will come, but slowly you will feel yourself getting better. but it is a slow process. This recovery is measured in weeks and months not in days and weeks, this is a slow process but you will get there and you will triumph because it can be done and has been done by thousands before you. I went through the same regimen only I had extra chemo for 2 weeks spaced out in the hospital 24 hours a day for 5 days. After I was done and reasonably recovered that I felt human again, and looked back at it I said to myself this is the hardest thing I have ever done in my life. Just go day to day getting treatments, resting over weekends, and do the same thing Monday again and you will get through. I read someone's comment on here years ago and they said they made up their mind they were going to get through no matter what even if they had to go day by day, hour by hour, minute by minute, or do it counting the seconds. What I said here may sound like a lot but it is not to scare you, just prepare you to keep forging ahead day by day and you will make it to the end and be cancer free. If eating or drinking your calories get to be impossible and you are offered a feeding tube take it, it will get you through and they are a lifesaver, and the treatment will save your life. If you have more questions, even daily that's what this forum is for. We are here to help others travel the path we traveled. Just get yourself anchored in, you can do this.

You will be amazed at yourself, what you are capable of, what you can do, and what you never thought you could do and you never knew it but you will.

Hang in There, stand strong, and NEGU (Never Ever Give Up)

Recipes and high-calorie information below

Wishing You the Best

Take Care God Bless-Russ

DCX Welcome

To the forum glad to have you. I too ended having a small nodule on my lung and liver but they are just being watched for now and I believe unless they start growing nothing will be done. My sister had one for years they were watching and it finally started increasing in size and I believe they used a cyberknife on it and it is gone. I would imagine your case is similar with a watch and see approach.

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 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

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