Hello All

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.

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

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.

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 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 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 swallowing exercises.. it shouldnt change your 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.

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.

Remember Andy anyone? He was always doing marathons!