Hello All

The Cincinnati Kid

...and good luck to all of you.

First, my breif history. Had a swelling in the gland / lymph area in left neck (no pain). Fortunately I didn't wait on it too long and after about 4 weeks went to see my regular doc. within 3 weeks of seeing him, I'd had a CAT scan (inconclusive) , seen a head and neck specialist for a thorough exam and had a biopsy (inconclusive).  Just had the surgery last week and whilst I'm in Margeritaville on the op table, samples are taken and tested and, long story short I have the lump(lymph) cut out and 1 tonsil removed. Other areas tested during surgery were negative. At post op I'm told the origin was the tonsil, which had then spread to the lymph.

I'm currently scheduled to see oncologist and radiation doc for initial consult early next week which I expect the treatment to be maybe chemo shots and daily radiation for 4-6 weeks.

 

Anyhow, what I'm particularly interested in from you veterans is, do any of you have any advice regarding diet / excercise / supplements and "natural" remedies in addition to your treatments?

I'm looking for stuff that is backed a tad by science and not too far "out there" if you know what I mean. 

To excercise or not?

Supplemnets / vitimins or not?

Diet / food to avoid or to add?

Immune system boosters backed by science?

 

Anything that might help give that extra 1% edge in the battle.

 

Cheers in advance and again, I wish you all well.

TCK

 

 

ERomanO

Welcome, Kid!

Hello from the opposite corner of Ohio.

The first thing you should do is look at the Superthread (Read only) at the top of this page.  There you will find a plethora of information.

You defnitely want to exercise as much as possible while undergoing treatments.  But how much exercise you'll be able to do is something only you can determine.

Prior to beginning radiation your oncologist will likely tell you to put on as much weight as possible because you will probably lose some as most of us did.  After treatments begin your diet may change quite a bit based on how much of your taste you lose and whether or not you're experiencing pain.  It's an ongoing process.

Not sure about supplements or immune sytem boosters.

Best of luck to you.  I'm sure others will chime in.  Keep us posted on your progress.

The Cincinnati Kid

Good day ERomanO and thanks

Good day ERomanO and thanks for the heads up on the SuperduperThread. Very informative.

Why is it that vegan smoothies are helpful but red wine, cigars and chocolate cake dont get a good mention?

Anways, superthread asisde I'm interested to know what oddball stuff the rest of you might have done to help you get through.

As an example from my end, I just started adding cinnamon to my coffee based on an article I read in Fall 2020 Holistic Primary Care. Now, dont for a minute think that I'm a sucker for every herbal smoothie ginger root sucking garlic chomping idea that comes along..... and the 'natural Healing" of things is much more an interest of my better half than mine. However, it dont hurt none to put a 1/4 teaspoon of cinnamon in your coffee and it tastes pretty good so why not?

So, what, if anything are the rest of you doing thats a little out of the box but has at least some basis in the real world

wbcgaruss

Hey Kid

Welcome to the club nobody really wanted to join. I don't have much to tell ya because ERomanO took care of most of the introductory stuff we always tell the new folks. He's quite a guy and knows what he's talking about. I would add emphasis on adding some extra weight if you don't already have some. Because there comes a time during chemo and radiation where if you can still eat that is not having swallowing challenges that everything tastes like cardboard or basically no flavor. So no joy in eating just forcing down food to get enough calories in. So for now pizza, subs, steaks, potatoes loaded with butter, bacon, eggs, anything you want, and lots of it. Also keep in mind Boost VHC (Very High Calorie) drink 530 calories in 8 ounces if you have issues with getting enough in this is a lot in 8 ounces. This is not an easy treatment but we all got through it and came out the other side, you can too. Prayer helps a lot and family and friends support and if you are not up to it folks help[ing with house chores or driving etc. I don't know the extent of your treatment schedule yet but I had 36 rads and chemo beginning middle and at the end plus some 24-hour chemos in the hospital beforehand. The rad doctors nurse did not mix any words she told me I might as well figure a year total of my life to do this which would be treatment and recovery combined and she was not far off. So I tell you this not to scare you but prepare for the worst and hopefully, your treatment regimen may not be as hard on you and your problems with it will be few. Some folks come through this with not many issues and have it pretty easy so I hope this for you. One more thing to be aware of is your saliva can get very thick during radiation treatment so you need to rinse as often as necessary with water, salt, and baking soda mixture as often as needed to keep ahead of it. Also if you have any pain during your treatment stay ahead of it don't wait till you have pain. You may have to just take pain meds for a while. Wishing you the best, we are here for ya, pray a lot-Take Care-God Bless-Russ

 

The Cincinnati Kid

Good to meet you wbc and

Good to meet you wbc and thanks for the heads up especially on weight gain as I do have a small amount of time for it and I'm a lightweight and always have been. Was 160 before the surgery and I'm pretty sure my tonsil didnt weigh 8lbs but I did lose that much in a week. So, good news, we now have a use for the chocolate cake. Adding whole whipped cream to the cinnamon coffee as I type,

ERomanO

Weight loss

I ended up losing about 30 lbs over the course of my treatments (35 rads and 3 7-hour chemo sessions).  The problem I had was that I not only lost my taste for carbs but was generally repulsed by them.  So I ended up on an unintentional Atkins diet or fish, steak, eggs (lots of eggs), bacon & cheese.  At one point I was even repulsed by water and ended up having to force myself to drink 2 liters of fluids per day.  Much of that was Gatorade, and it wasn't far behind water on the repulsive scale.

One of the nurses that adminstered my chemo, who resembled Mr Clean, told me to eat as much as possible because once I lost more than a quarter of my body weight I would be losing muscle mass, and after age 50 that muscle isn't coming back.

The main reason wine may not be a good idea is that radiation will give you a "sunburn" at the primary tumor site and you'll want to avoid anything that is acidic.  Eat all the chocolate cake you want but it will likely have no taste or taste awful.  But everyone is different, so until you are the thick of things you will know what works and what doesn't. Take these recommendations as guideline.  I didn't discover this site until a few months after I had completed treatments.  So I was just going by what my doctors told me and by figuring things out along the way.  Every Thursday during treatments I would meet with my radiology oncologist.  After completing my 5th week of radiation I met with a resident before my RO came in.  He asked if I was able to eat enough.  I told him about my diet and said that I had 4 scrambled eggs w/cheese and a big pile of bacon every morning.  He looked at me in amazement because many patients have so much pain that they have to get a feeding tube and/or go on pain meds.  I had neither, but, again, everyone is unique in regards to how they are affected by radiation.

Once you begin treatments start adding up your daily calories.  My docs to me to consume at least 2000 calories a day.  I failed at that.  You may find yourself in the same boat.  It's amazing how much you need to eat to get your daily calories in.

debbiel0

My experience was about the

My experience was about the same. My dr's encouraged me to eat as much as possible. My advice.. eat what you love now! There maybe a time when nothing tastes good, or you can't swallow properly.. gain as much weight as you can.. I lost over 75 lbs..(ok, at least  25 was  needed!)  But my body totally shut down. I was on a feeding tube for 11 months...eat eat eat and exercise as much as you can everyday! 

Also, if you haven't been recommended to a speech therapist.. ask for it! My therapist literally saved my life! I still have troubles, but 3 years out.. I still do my mouth exercises.  Sometime they seem silly,  but they are very important! 

The best you can, keep up your daily calorie intake. My nutritionist stressed intake now! Deal with proper diet later!  

I have lots of tricks to add calories ( without volume) to your diet. Later if you need help, reach out!

You have found the perfect place for support, helpful hints, and a shoulder to lean on.  

Let us help!  

debbiel0

The Cincinnati Kid said:

Good day ERomanO and thanks

Good day ERomanO and thanks for the heads up on the SuperduperThread. Very informative.

Why is it that vegan smoothies are helpful but red wine, cigars and chocolate cake dont get a good mention?

Anways, superthread asisde I'm interested to know what oddball stuff the rest of you might have done to help you get through.

As an example from my end, I just started adding cinnamon to my coffee based on an article I read in Fall 2020 Holistic Primary Care. Now, dont for a minute think that I'm a sucker for every herbal smoothie ginger root sucking garlic chomping idea that comes along..... and the 'natural Healing" of things is much more an interest of my better half than mine. However, it dont hurt none to put a 1/4 teaspoon of cinnamon in your coffee and it tastes pretty good so why not?

So, what, if anything are the rest of you doing thats a little out of the box but has at least some basis in the real world

Healthy or not.. cinnamon in

Healthy or not.. cinnamon in coffee works for me! Both my  daughter in laws swear by bee pollen.. they gave me some, I didnt really get a sense of change, but it made them happy I tried! ? Does it work? Who knows..mind over matter !

The Cincinnati Kid

Thanks for that debbie.

Thanks for that debbie. Hopefully honey counts as bee pollen. I already use that a lot in cooking. Maybe I'll add it to my hot tea. Interesting on the speech therapist. I immigrated to USA from England many moons ago and I still have the British accent. Hopefully that doesn't get lost....its been my passport to love for years!.....Maybe I'll have to find an English Speech theapist. 

Bring on the calorie add advice. So far, all Ive doen is buy a carload of chocolate milk protein drinks. Wife and myself are both pretty handy in the kitchen and have started to put some thought into what to cook. 

debbiel0

The Cincinnati Kid said:

Thanks for that debbie.

Thanks for that debbie. Hopefully honey counts as bee pollen. I already use that a lot in cooking. Maybe I'll add it to my hot tea. Interesting on the speech therapist. I immigrated to USA from England many moons ago and I still have the British accent. Hopefully that doesn't get lost....its been my passport to love for years!.....Maybe I'll have to find an English Speech theapist. 

Bring on the calorie add advice. So far, all Ive doen is buy a carload of chocolate milk protein drinks. Wife and myself are both pretty handy in the kitchen and have started to put some thought into what to cook. 

Speech therapy, is for

Speech therapy, is for swallowing exercises.. it shouldnt change your accent ?

 

The Cincinnati Kid

It better not! It's been my

It better not! It's been my ladykiller for years and I've got Bond, James Bond down pat. Kid, Cincinnati Kid

SuzJ

Accent..

It wont change it LOL

As everyone has said, eat, eat and eat. Try to really put weight on. I lost a bit more than most - 80 pounds, which was about 8 a week.

I refused a feeding tube - I insisted on eating (could be why I lost 80..) It was also because I was told it would be harder to get back into eating later.

I exercised - I sang LOL  - LOUD - in the car, with the radio on loud. I did A, E, I, O, U's to stretch my mouth/jaw.

I found pain meds didn't do much, so before meals, I gargled with liquid lidocaine - I tried magic mouthwash, of all the things I could taste, WHY did it have to be that??

Eat chocolate cake, because I am sorry, nothing will taste as good as what your memory tells you later. rip chocolate, fish n chips, .. yea, everything I liked.

wbcgaruss

The Cincinnati Kid said:

Thanks for that debbie.

Thanks for that debbie. Hopefully honey counts as bee pollen. I already use that a lot in cooking. Maybe I'll add it to my hot tea. Interesting on the speech therapist. I immigrated to USA from England many moons ago and I still have the British accent. Hopefully that doesn't get lost....its been my passport to love for years!.....Maybe I'll have to find an English Speech theapist. 

Bring on the calorie add advice. So far, all Ive doen is buy a carload of chocolate milk protein drinks. Wife and myself are both pretty handy in the kitchen and have started to put some thought into what to cook. 

Try Any High Fat Food

Maybe like puddings or ice cream and I have been drinking Boost VHC (Very High Calorie) 530 calories in 8 ounces. You have to buy the VHC online as it is not available in stores only the regular boost. again lately to try and gain some weight back. If you like bacon and eggs that would be good and fry the eggs in plenty of butter and use plenty of butter on your toast. And since you are handy in the kitchen nothings better than home fried potatoes with onions and whatever else you like such as mushrooms etc slowly fried in lots of butter. Also here is a recipe posted below that I found on the net a long time ago but haven't tried it yet and you only need a beater to make it not a blender. Best wishes-Take Care-God Bless-Russ

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

 

johnsonbl

If it's HPV positive you should be sure to...

explore all your options.  If they got clean margins on the tonsil and it had only spread to a single lymph node you could be a candidate for a variety of different approaches.  You may not need chemo at all.  And there are trials where the radiation dose is half of what most folks got.

If they don't offer you different options I'd be surprised and I'd seek out an academic medical center for a 2nd opinion.

Good luck.

 

Mattie65

Same as you but

… they removed both tonsils, for reasons of prophylaxes.

I take vitamin C, D and E as well as high doses of Melatonin (20 mg), which, according to some studies, promises to reduce some side effects of radiation.

I'm mainly living on high calorie drinks, because anything I ever try to eat tastes like rot. Sorry to be bland.
The calorie drinks go down easy. They can keep you away from the feeding tube, which I've had my fair share of after op, and I really wouldn't like to go back to. If nothing else works, though, a feeding tube can save someone's life.

Still struggling to find things I can eat. It's frustrating because you throw away a lot of food for the reason of being absolutely unable to eat it, due to the awful taste.

On a side note: radiation treatment has evolved a lot these last years, so don't be too scared, like I have been after reading a number of reports from people who had been treated in the past. Today's treatments are more precise and less damaging than a decade away from now or even less.

The Cincinnati Kid

johnsonbl said:

If it's HPV positive you should be sure to...

explore all your options.  If they got clean margins on the tonsil and it had only spread to a single lymph node you could be a candidate for a variety of different approaches.  You may not need chemo at all.  And there are trials where the radiation dose is half of what most folks got.

If they don't offer you different options I'd be surprised and I'd seek out an academic medical center for a 2nd opinion.

Good luck.

 

Thanks for that and top

Thanks for that and top advice. Fortunatly, or unfortunaltly whichever way you look at it, my better half went through a tough battle with breast cancer 10 yrs ago. Long story short it was at the same medical facility. She was victorius in her fight but one thing we learned through that year long process was to take charge, seek options and be utterly involved and educated in all aspects. We ask a lot of questions at all the appts and my upcoming one with the oncologist will be the same.

TCK

motorcycleguy

TCK,

I'm not a medical professional, but my Oncologist told me to continue to work out all I wanted - and I can't imagine why that would be a bad thing. If you're into very strenuous activity though - you should ask your own Oncologist.

A multivitamin was recommended to me, and I took it all the way through treatment.

As far as food, radiation and chemo treatment can put a dent in your ability to taste and swallow. I recommend you eat ALL the food you can, NOW - to build up a little.

I was able to drink smoothies throughout, that my girlfriend made for me. She spent a lot of time researching vitamins, minerals and immune system boosters.

I wish you the best possible outcome, from your treatment. Keeping your spirits up can be tough - but it's vital. I hope you have a lot of helpful people in your corner. (If you ask for support, you'll be amazed at how much help you'll get!)

mg

The Cincinnati Kid

motorcycleguy said:

TCK,

I'm not a medical professional, but my Oncologist told me to continue to work out all I wanted - and I can't imagine why that would be a bad thing. If you're into very strenuous activity though - you should ask your own Oncologist.

A multivitamin was recommended to me, and I took it all the way through treatment.

As far as food, radiation and chemo treatment can put a dent in your ability to taste and swallow. I recommend you eat ALL the food you can, NOW - to build up a little.

I was able to drink smoothies throughout, that my girlfriend made for me. She spent a lot of time researching vitamins, minerals and immune system boosters.

I wish you the best possible outcome, from your treatment. Keeping your spirits up can be tough - but it's vital. I hope you have a lot of helpful people in your corner. (If you ask for support, you'll be amazed at how much help you'll get!)

mg

thanks motorcycleguy. And

thanks motorcycleguy. And thanks for bringing us back to topic which was what other stuff are we all doing to give us the edge. Interesting to note on excercise, I just this week heard of a study out of England that leads us in the direction of excercise does indeed boost the immune system so if you are able....why the heck not do something if you can.

So, I've got cinnamon in the coffee, excercise, honey ....so far so good. 

motorcycleguy

The Cincinnati Kid said:

thanks motorcycleguy. And

thanks motorcycleguy. And thanks for bringing us back to topic which was what other stuff are we all doing to give us the edge. Interesting to note on excercise, I just this week heard of a study out of England that leads us in the direction of excercise does indeed boost the immune system so if you are able....why the heck not do something if you can.

So, I've got cinnamon in the coffee, excercise, honey ....so far so good. 

TCK,

Treatment may drain some of your energy, at some point during your treatment. So - don't stress, or push yourself too hard.

But, as you mention, if you can exercise, you'd be crazy not to!

Good luck - you certainly sound like a positive individual - and I suspect you'll get through this fine!

mg

SuzJ

Andy

Remember Andy anyone? He was always doing marathons!

PipLily

Hello!

You are in the right place on this forum! It is what got my husband and I through this past year! My husband finished treatment June 2020, and I’m happy to report he is able to eat literally anything, and enjoy the taste of most everything! Lost about 35 pounds total without the use of a feeding tube. I encouraged him to walk, even just short bits, most every day. I had researched many , many supplemental treatments ( ie: high dose Vitamin D amongst many others) We were basically told by his Rad Onc and Oncologist to hold off till after treatment in the way of herbal and vitamin supplements. Main reason being that many of these with antioxidant effects can have an antagonist effect on cancer treatments, basically trying to “work against “ the effects the treatments are trying to have on the cancer cells. ( We were at a major teaching hospital, so I ended up trusting what advice they gave, and did not implement things until after treatment ended a few months)

We basically just tried to maintain weight, calorie, protein intake by getting the most bang for his buck with any intake. Let your body dictate to you how much you do, what you fe up to on a daily basis. Sometimes it’s an hour by hour challenge, but you will come through the other end, and be able to live life again! Many people on this forum attest to that!!