Left tonsil and left lymph node.

Dave705

Excellent news! So happy for you. Keep up your faith. You will get through this journey! Dave

LuvnTN

Just saw your topic and it caught my eye. I, also, was 56 last year in September when diagnosed with met SCC in my left tonsil and left lymphnodes (also hpv+). Hmmm.. seems to be a pattern, huh? I had TORs, RND.. removed 58 lymnodes (positive in 34 of them), with a nodal extension in one. Had 7 weekly cisplatin chemo sessions, 6 weeks of proton radiation (had to do both sides due to nodal extension - lower dose on right side). Finished all treatments mid-Jan of this year. Heading down for my last follow-up for this year tomorrow (hopefully). Was able to work through the trismus using mouth stretches several time a day (mine kicked in around 2-3 weeks post treatment). I used the three fingers measurement as a goal... and I literally stetched it open with my hands several time a day to get it there (yes, it was painful.. but worked). Every morning I woke up, I was back at step one... kind of frustrating. Then one day, I just yawned... and my mouth opened up all by itself. It was an amazingly good day! That day happened a few months after it started... and now I only stretch my mouth once ever week or so to relieve any tightness. Periodic swallowing difficulty has subsided for the most part. Constant massages and stretching to clear any lymph that might build up was a must to prevent lymphodema. I picked up this device called an "anma" for that purpose. Keep the neck stretched out and moist with some type of natural oils or lotions every day... it will speed up healing. My lymph accumulation ceased a few month after finishing treatments as well... I really massaged it well to keep the lymph flowing down the neck and around the scar. I had a pretty good darkening of the skin where I was radiated.. although, it is all looking good now. Probably the biggest issue right now is from what I assume is fibrosis or scar tissue accumulation in the areas of both the tonsil removal and the neck dissection. For DIY-going-forward prevention, I read into the "Joe Tippens Protocol" and do that daily (mycancerstory.rocks). I also spent 6 months dosing with AHCC in an attempt to clear the HPV (don't know if it worked.. haven't been tested yet). For the fibrosis build up, I am daily dosing with serrapeptase.. can't tell if that is working or not - but still doing it daily. The doctors have no comment when I mention any of this; however, they can't provide any guidance on how to prevent it from occurring elsewhere in the body going forward. So, I am doing what I can reasonably sustain to do as a daily protocol. Finally back to some level of physical strength near where I was last year prior to surgery. Good luck going forward!

DaveInVirginia

HPV+ in my left tonsil, 54 y.o. male, stage 1. Diagnosed this time last year ("Happy birthday, you have tonsil cancer."). TOR surgery in January w/neck dissection (clean lymph), 6 weeks of 60 Gy radiation concluded in mid-April. Clean PET scan in mid-July (hoorah!). That's my stats. Excellent medical care at GW Hospital and INOVA, for which I'm very grateful.

Six months out from ending radiation and my taste is still pretty hosed up; in fact, it seems almost worse, if that's possible. I get sweet, but everything else is very, very bland and unappetizing. I've got mild trismus (and some lymphedema, nothing major), but nothing I can't clear with stretching. Problem is, angular cheilitis set in, which makes opening my mouth very painful (basically cracking/tearing at the corners of my mouth). I've lost about 25 pounds (187 to 162; 6'1"), and can't seem to put it back on. I keep going with high-cal Boost drinks and cream soups, but I'm hoping for more taste as time goes on. I was interested to read an earlier comment that claimed some benefit to taste from taking hyperbaric chamber treatments; I'm not familiar with that, but may look into it...!

The side-effects are a bummer, but the clean scan in July was all that mattered. Best wishes to all out there!

wbcgaruss

Dave, you have made it through the worst and have come out on the other side with a clean PET scan in July Ye-HAH. As far as taste it is sort of a waiting game till it comes back and to what extent. In my case, I can taste enough that it is not difficult to eat. But my taste is not strong but I am Blessed to be where I am. I favor sweet or salty, and put plenty of salt on my meals Just be patient and hope for the best. If there is a food bar near you or a place to eat that offers a bar where you can pick out what you want and try real small amounts of different foods sometimes that helps. I have trismus also and I am working with a speech therapist right now on swallowing problems and dealing with trismus is part of the regimen. She gave me tongue depressors and you stack them up till you have the maximum amount you can get between the front teeth and try to add one more stick and keep them between the teeth stretching the mouth for 30 seconds if possible. Repeat several times and do several times a day eventually increasing the opening till you can add another stick. Below is a video explaining it only he uses wooden spoons. Either way, it is having the ability to add to the stack and slowly increase your mouth opening without hurting yourself or causing any damage. The Chelitus should go away with a little care and you will be able to do this.

Angular cheilitis is a common skin condition affecting the corners of your mouth. It leads to painful, cracked sores. People often confuse angular cheilitis with cold sores. Unlike cold sores, angular cheilitis isn't contagious. This condition usually goes away with special skin ointments, medication or diet changes.Jun 15, 2021

https://www.youtube.com/watch?v=oFuBCPj0644

You are still actually early in complete recovery you will probably experience more improvements over time. As far as gaining weight I will post a saved file I have with suggestions below, I hope something here helps you.

Take Care God Bless-Russ

There is a small story preceding the recipes from someone.

I give Debbie l0 credit for this and a lady named Karen

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