HELP TREATMENTS START APRIL 30

Charmit said:

Awe your so sweet!! And so

Awe your so sweet!! And so right it would help for sure but this is the next best thing. I will inquire about the mouthwash need to pick up my floride trays this week. Also want to make an appointment with the nutritionst they have on staff there. Speech therapist tomorrow and that last appointment before the big day. I will be asking them to crank my country brings me to a happy place by my pool or the beach. This site is a God send for sure.

good for you! At my radiation office there is a nutritionist on staff that would meet with me once a week. I had been in speech therapy prior to radiation but during actual radiation I took break towards the end or perhaps midway thru just because I was so exhausted. I resumed afterwards. And yes to the country music!! Thats what I listened to. 

Hi Charmit, you sound like me just a little over 2 years ago. Everything below is my advice to you. Take it with a grain of salt or as a bible...it's just advice and it worked for me.

To begin:

                I was diagnosed April 1, 2016 with stage 3 HPV SCC of the left tonsil and 3 lymph nodes, unfortunately it wasn’t an April Fool’s joke. I was 50 - 5’11’’ 218 lbs. and in otherwise good health. I’ve worked out regularly, and on-and-off for the past 15 years (no steroid use). Mary Bird Perkins and a team of LSU Doctors recommended 35 treatments – no chemo – no surgery. I decided to go with Mary Bird Perkins and LSU (I had 2 other options/opinions as well) but decided on LSU. They all had approximately an 85% success rate, and I wanted as many options as I could get on the back end if radiation didn’t work.

*Keep in mind, everyone’s body is different and everyone heals differently.

Last day of treatment:

                Mucositis took over entire throat, uvula, soft palate, tonsils, 50% of hard palate, left side top and bottom of Maxillary tuberosity & vestibules, and left side of tongue front to back. My weight dropped to 181 lbs. (lost 37 lbs.), DRY Mouth, NO feeding tube, and I physically felt very good (besides my mouth), but was radiation-drained tired.

As of today (4-23-2018):

                Both my ENT and Oncologist are startled as to how well I’ve done during and after treatment recovery, and say it looks as if I hadn’t even gone through 35 treatments. I have no physical appearances either in my mouth or on my neck. My tongue gets sore from time to time, my neck is a little stiffer, I get the back/neck tingles occasionally, and my mouth is drier than I like, but I am way way better off than most. Almost all my taste is back to normal or a new normal. I use hot sauce, I used to use tons now I just use more than most people. I still lightly struggle with tomato and pickled stuff, but it’s getting better and better each month. I can drink anything: coffee, tea, soda and juices, including beer and alcohol. But, coffee and alcohol (diuretics) make my mouth drier than it normally is.

*Keep in mind, everyone’s body is different and everyone heals differently.

How I got my results and my recommendations:

                Listen to your doctor’s advice. They are for the most part highly intelligent (my daughter is one and she’s a smarty), experienced, and you are not their first patient. However, most of them have not gone through what you are about to. In my opinion, they got everything right except the “eat as much “food” as you can”. Let me explain: Nutrition is the best weapon you personally can bring to the fight, but getting enough good calories down can be the hard part. Maintaining your weight is your goal, you will hear it constantly from all the medical professionals. IN MY OPINION, it all comes down to your mucous membrane, and how well you take care of it. Chemo: the side effect of vomiting up stomach acid erodes the lining of your mucous membrane which may cause mucositis. If it develops, it should heal fairly quickly (4 days to a week) and cause you no significant problems. Nausea will be what keeps you from eating. Radiation: radiation destroys the epithelial cells lining your gastro-intestinal tract. Because you undergo radiation continuously for an extended period of time, the cells of the mucus membrane are never able to replicate quickly enough to fully heal the damaged membrane which in turn develops into mucositis, and eating/nutritional issues develop. Although my mucositis was rough at the end, it only got rough the last 3-4 days of treatment and 1-2 weeks after; it took about 1 ½ months for the mucositis to visibly disappear.

Where the Doctors mistakenly advised me:

                In my opinion, and I figured this out just a little too late, do not eat solid food of any kind starting the day you begin radiation treatment. By eating solid food you tear away the mucous membrane of your throat. What you should do is drink super high calorie nutritional shakes and smoothies. This will allow you to fend off mucositis for a longer period of time, increase your quality of life and hopefully prevent you from having to get a feeding tube. Also more importantly, you will be capable of ingesting enough nutrients and calories to help heal during treatment, and maintain your weight. Normally, a 3,000 calorie diet would make just about anyone fat, but it doesn’t do anything against radiation. I drank 3 2,500 – 3,000 calorie shakes/smoothies a day and still lost 37 lbs., although about half was lost the last week of treatment and the first week of recovery when my mucositis was rough. The high calorie/nutrient shakes/smoothies are KEY to prevention and recovery.

In short, here’s the formula to my success and the ingredients I used in my shakes/smoothies; all of the ingredients can be purchased at your grocer, GNC and/or Amazon.

1. Stop eating solid food day 1 of radiation treatment.

2. Drink at least 3 shakes a day to maintain weight.

3. Take a good multi vitamin after each shake.

4. Floss & brush teeth very lightly with extra soft tooth brush after each shake.

5. Rinse lightly using oral rinse (baking soda – salt – water) several (20+) times a day,

6. Do all speech and swallowing rehab exercises as prescribed.

7. Quit all chores and activities.

8. Sleep and rest every possible moment you can.

9. Take Advil every 4 hours as needed, you’ll need it. Pain pills (hydrocodone) didn’t work, so I fought the inflammation instead which helped a lot.

10. Drink water (lots of water). You’re going to do this anyway when your saliva glands stop working, but I wanted to mention it because of its importance.

11. Drink Gatorade to help with your electrolytes. It will taste terrible. Grape was the best for me.

12. Appreciate the people and the little things in your life. You will do this regardless. And when this is all over you’ll feel reborn.

Base for the shakes and smoothies: (1,990 calories)

1-Boost Plus (360 Calories)

1-scoop - Optimum Nutrition 100% Whey Gold Standard (110 Calories), Vanilla or Chocolate

2-cups Ice cream (720), Vanilla or Chocolate

3-tablespoons Viva Naturals MCT Coconut Oil (420)

½-cup egg white: All Whites or Egg Beaters (200)

1-cup Horizan Organic DHS Omega-3 Milk (150)

1-tablespoon Optimum Nutrition Glutamine

2-tablespoons Benefiber (30), you’re going to need this stuff)

Stuff to add to shake base for nutrition and calories:

Wheat Germ (1/4 cup = 180 calories), this was a go-to for me

Oatmeal (1/2 cup = 150 calories) food processor this or it will scratch your throat.

Honey (1 tbls. = 64 calories)

Chocolate Syrup (1 tbls. = 45 calories)

Natural brown sugar (1 tbls. = 50 calories), go-to for me

Natural Peanut Butter (4 tbls. = 400 calories) this was a go-to for me, tasted kinda like peanut butter

Bananas – Blueberries – Raspberries – etc., blend more than normal, bananas were a go-to for me

Throw the base plus whatever else you want with ice as needed or extra milk for consistency in a blender and go. It should blend to about an inch from the top of a regular sized blender.

Other tips:

1. Buy a good cool humidifier. It helps a little with dry mouth.

2. Buy an extra soft toothbrush: Dr. Collins Perio Toothbrush.

3. Do NOT skimp on the quality of the base ingredients: protein, vitamins, Glutamine. If you can get medical grade, that’s even better.

Charmit said:

I’m so happy your well and on

I’m so happy your well and on the mend. I have an amazing support group that have encouraged and helped me. One another note they haven’t been where I am or faced what I’m facing so I feel when I talk concerns or fears they aren’t understanding. If that makes sense. It’s a struggle for real because right now it’s the fear of the unknown and I’m the type that needs to know. I am truly finding comfort here cause you all walked this path or are walking this path now. I know we are all different and handle things different but to hear other stories of dealing and coping help. 

‘I’m going to ask them next Monday if they can play country music for me. It’s helps my soul and relaxes me. Hoping they say the two Ativan will be good or maybe prescribe something stronger. Hate taking any kind of med but at this point whatever gets me through I’m game. A friend is certifing me for medical marijuana she said it will help with my sleeping, eating and nausea. I am willing to try anything at this point. 

Do you have any insight on mouthwash or creams for neck?? And I’m looking forward to June 18th last treatment and hope I come back strong because I’m taking one hell of a beach vacation lol

I used AquaPhor (AP), a lot of it. Buy the big tub. I had bad rad burns across my neck. I put thick layers of AP on and within 3-4 hours I was dry. Glad I did because my neck (outside) healed very nice.

Other advice that comes to mind right now:

- Get an electric blanket, I was cold all the time

- I had to have someone drive me to rad after about #20

- If you get the feeding tube installed, see realfoodblends.com, my insurance paid for this and it was real food. They initially gave me formula that was pure sugar, I would not use it. I mixed 1 cup of milk with each packet of realfoodblends and did 4 packets a day to get 1600 calories.

- For constipation I used Colace stool softener twice a day. I would go days/week without going. But was not eating much.

- Keep a daily diary of everything

- There were so many things, drugs, eating schedule, etc. I made a hourly schedule and it really helped. Especially food/water schedule. Sounds weird but without taste or food cravings and not getting hungry (even after days without food) you don't want/need to eat. After I was dropping weight like crazy fast, my wife helped me create an hourly schedule and I started eating by the clock. Once I started keeping my calorie intake at 1600 a day, things were better. I still eat by the clock four months out, don't crave food.

Hi again Charlene!

I few tidbits....I used per my Cancer Centers instructions a lotion called Calendula (plant based /healing available at Whole Foods) every four hours front and back of neck during the day, and Aquafor every night. You will need a fresh pillow case every day if you use the Aquafor as it is very greasy. I did this religiously and my radiation burns were very mild and I healed quickly and perfectly with zero scarring.  As far as nutrition, another smoothie drink to try that is very high protein and silky smooth on the throat is the Soy Protein drink made by Odwalla. It is in every grocery store and was very easy to swallow. The vanilla was the only flavor for me that did not make me gag. If you end up with a Peg Tube, I would highly recommend using "Liquid Hope" meal replacement for peg tubes. Look it up on Google. My insurance covered it. It is crazy amazing stuff. All natural and plant based with high protein.  You will lose your hair in the back of your head guaranteed. You may want to get a short hair cut now...I think mine was coming out in clumps around week three. I felt like a troll doll, but just kept it short. Mine started growing back about 2.5 months after treatment. It came back really curly, so I like it! Also, take immaculate care of your teeth. If you dont have one already, buy a water pik. Use your flouride trays EVERY day.Floss 2-3 times a day as well. Make sure you dont swallow any of the flouride from the trays as it kills all of your good bacteria in your stomach. And take a good Probiotic every day. As far as medications, always ask the pharmasist for the liquid form or under the tongue if available. If not, we used a mortal and pestle to grind up any pills to powder then dissolved them in water. I also found that one of those travel horseshoe shaped pillows to sleep in an elevated postion was incredibly helpful by week 4 when my mucous issue (the worst side effect for sure of my treatment) appeared.

Talk soon. Praying for you!!!

Nancy