HELP TREATMENTS START APRIL 30

nancytc

I was diagnosed at T2N2bM0. I

I was diagnosed at T2N2bM0. I was a Stage 4a. I had three infected lymph nodes with no capsular extension (thats good) and my right tonsil had a tumor that was 2.1 cm. I had 4 tonsils removed and the base of my tongue resected with a Robotic surgery to find my primary cancer as well a lymphadenectomy to remove a lymph node for diagnosis. My treatment plan was 33 rounds of radiation and 3 mega doses of Cisplatin. I asked my Radiologist if I would just get the right side radiated (hoping). He said that the lymph nodes are like a sink drain. That the cancer can back them up and the cells can go up and over to the other side. So they were going to lightly treat the left side as well to be on the safe side.

I haven't heard of too many on this site that did not have bilateral treatment although Im sure they are out there, but I am sure it depends on all of the particulars.

Nancy

Billie67

Charmit said:

Florid trays picked up today,

Florid trays picked up today, water pik I ordered today, will stock up on the cream. And my hair I will have her go shorter next cut in a few weeks, as petty as this sounds that will be a hard part seeeing clumps of my hair but in reality small price to pay for my furture. WHY DOES THIS HAVE TO SUCK SO MUCH???? Tonight I’m terrified and can’t shake it, 5 more days!!! I cried a lot tonight....

Thank you for all the wonderful advice as always y’all will never know how much I appreciate it!!! 

God bless and thank you 

‘Charlene

Charlene, 

Charlene, 

do you know which chemo you are going to have? Have they told you that you would lose your hair? I ask because some Chemo does not make you lose your hair. My chemo did not. Radiation made the very back and underneath hair fall out but my top hair covered it. Like if you were to put your hair up in a pony tail, the part under the ponytail holder is what I lost. If I had my hair down and not in a ponytail you couldn’t tell. 

ProustLover

When my husband's tongue

When my husband's tongue cancer metasticized to lymph node in his neck (Stage IV Level 4) they told him that even though his tongue and neck cancers were on same side, there was chance that a "low lying" cancer will move to other side. This was based on the standard stastistics/algorithms used in the field.  Husband not thrilled, had hoped to do just one side, but opted for both.  Last treatments (33 radiation, 6 chemo) ended two weeks ago.  We had all the fears you've so courageously expressed, Charmit, and I have to tell you he got through the treatment and first 2 weeks post, right on track.  Worst side effect, for him, is the mucus, which didn't really kick in until towards the end.  We're now in the "follow up" mode, hoping for the best.  I'm glad you have found this site (so sorry you had to) and sincerely admire how in touch you are with your feelings and that you're willing to share.  One day at a time..you can do this!  

Charmit

Billie67 said:

Charlene, 

Charlene, 

do you know which chemo you are going to have? Have they told you that you would lose your hair? I ask because some Chemo does not make you lose your hair. My chemo did not. Radiation made the very back and underneath hair fall out but my top hair covered it. Like if you were to put your hair up in a pony tail, the part under the ponytail holder is what I lost. If I had my hair down and not in a ponytail you couldn’t tell. 

Oncologist said I will NOT

Oncologist said I will NOT loose my hair!! So I will put it up in a small ponu seeing it’s kinda short now anyway. 

nancytc

Hi Charlene Great news about

Hi Charlene Great news about your hair! Where ever the radiation ejects out through out the back of your head, the hair falls out was how my radiologist described it. Your radiation plan must be at an angle that it isnt going to go above your hairline. Your oncologist would know. I would be celebrating that!!!

Nancy

GooganK1965

Charmit said:

Wow thank you for all that

Wow thank you for all that insight went and purchased a humidifier tonight and some different flavored ensure shakes to see what I like aslo husband bought me the magic bullet so we can make me drinks. 

Can you tell me if you had radiation on both sides or just one?? I’m having it just the left with chemo for 7 weeks....and I pray I manage as well as you have. God Bless yoU and thanks for reaching out to me and all the informative information you shared!!

Both sides

I had radiation on both sides. Best of luck, you will do great...

OKCnative

GooganK1965 said:

YOU GOT THIS!

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.

Congrats! And I personally

Congrats! And I personally agree with everything except #'s 1, 7, 8.

Just my experience... 

#1 - Docs and nutritionist were adamant I should eat solid food until physically impossible. That came around week 5-6 of radiation. They said it would ensure that my swallowing adapted to the changes in my epiglottis and would keep me from having swallowing issues in general and would be better for my mental attitude.

#7 - I actually made an effort to keep my routine as normal as possible (drove myself to rads every early morning and then went to work). I also added daily walks to keep my muscle loss at a minimum and to keep me active and mentally strong. Activity is what I credit for getting over fatigue and neuropathy.

#8 - While I had 2-weeks of pretty constant sleep and a week of no sleep at all (mucous to bad), the rest of the time I kept my normal sleep patterns and simply added one one hour nap in the middle of the day.

But, everyone reacts differently. I'm just glad I was back to 100% within 2 months of treatment.

Good luck to all.

QueenieJ

Charmit said:

Crazy question in the scheme

Crazy question in the scheme of things and I feel stupid asking but the loosing of the hair does it grow back?? I am not a vain person but we all love our hair!! Is it better if we pull it back and away from the line of treatment? I have the notebook already but my isn’t has cool as hello gorgeous Lol I think I need a new one lol 

My husband brought me the Nurti Bullet so hoping to find some good recipes for drinks. I don’t want the PEG so going to do my best to avoid but in the end if I need it I will suck it up and get. 

‘The tonsil thing was a mess a think my ENT dropped the ball on that one but he is a great doctor and I can’t fault him. Just sucks I had to endure that two times after having my neck dissected. I went from no surgeries to having three in less then two months.

The mask I contacted my doctor and asked if I can take two Ativan that day but haven’t heard back seeing it’s the weekend. Or maybe they can prescribe something stronger. My fear is laying in that room with the dreadful mask on all alone. I’m a hold hands type person when I’m scared. But maybe they can play me some country music loudly lol 

My questions now are simple how does one get through this, even if it’s one side for me I wonder if the side affects will be not as strong....time will only tell.....

I didn't see you mention the name of your chemo drug, but my husband is on Cisplatin. Hair loss is a very rare side effect on this drug. My hubs radiologist said he'd lose his facial hair in the treated area though... no more goatee. Honestly, as a nearly 50-year old woman, losing my whiskers sounds awesome! LOL   I really wish you all the very best tomorrow. You will do just great!!

Charmit

QueenieJ said:

I didn't see you mention the name of your chemo drug, but my husband is on Cisplatin. Hair loss is a very rare side effect on this drug. My hubs radiologist said he'd lose his facial hair in the treated area though... no more goatee. Honestly, as a nearly 50-year old woman, losing my whiskers sounds awesome! LOL   I really wish you all the very best tomorrow. You will do just great!!

Funny I said the same thing..

Funny I said the same thing....my chin hair can go lol 

And thank you for the luck I’m going to need it...told my mom they are going to have to knock me out to get me in the radiation room let alone on the table!!!

QueenieJ

Bobh63 said:

Neck cream

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.

 

neck cream question

My husband's rad team told him *nothing* but soap and water on his neck... that any cream at all would cause his skin to fry like bacon. Did you use the aquafor during or after treatment?

 

Also, I second the "daily diary" advice. We track EV.er.Y.THING... AND  the humidifier is a lifesaver.

dwp155

Easy Girl!

We were ALL scared to death.  I am 5 months post treatment for the same thing.  I put on 10 pounds before treatment to helap and it did.  This is all about you! If I can give you one major piece of advice do not use the last treatment as a goal.  The 2 weeks post treatment were the worst for me. I continued getting fluids to help me through it.  I published a blog filled with fears, successes, treatment tips, food and what it was like.  I am blessed for having to have gone through it and be cancer free.  The blog starts at diagnosis and is current through today.  During treatment I wrote daily, now about once a week.  www.cancerguy.blog   the rad treatments are okay - get to know your treatment team tell them you are scared - they will help you through.  Good Luck!