I had a feeding tube inserted 2 weeks before treatment. This was recommended by all my doctors including what i read on this forum. Pretty standard procedure to install tube (again not really pleasant). Make sure docs give you some pain meds and anti-nausea drug after insertion of tube. When I came home from hospital, I was actually feeling ok…for about 3 hours..then I hit me. I started getting really nauseous and a lot of pain. No one from hospital told me about this or gave me any meds before i left. I actually felt like calling an ambulance and the paramedics…as I was feeling really bad. I called a doctor friend of mine and she said “they should have given you pain and anti-nausea meds as many people have reaction to anesthesia”. Fortunately, I already anti-nausea meds…for my upcoming chemotherapy treatments. She told me take one of these pills, and about 30 minutes later I felt like a new man. Felt completely better. So make sure you get the right meds (and fill at the pharmacy) before you leave the hospital. Side note: I talked to my main doctor the next day and he said “they should have given pain and anti-nausea meds when you left hospital”.

But you kind of look like a Cyborg from Star Trek with feeding tube hanging out your stomach. But oh well…this tube REALLY helped out during treatment. I could still somewhat eat and drink all the way through treatment. But you are so nauseous with chemotherapy (even with anti-nausea drugs) that eating is actually repulsive. So having a feeding tube is the best way of getting food into your body to keep your weight up. Even with feeding tube, my weight dropped from 140 to 128. I had my feeding tube removed about 1 month after last treatment. My doctors said this was pretty early. Most people keep feeding tube for several months.

This was not as bad as I thought it would be. I scheduled my daily treatment at 10:30am each day. 5 days per week (no weekends and no holidays). I would sleep in until 9am. Have some breakfast then drive myself to clinic. I always joked around with radiation helpers…they have tough job. They make this “mask” for you….to keep you head still when doing radiation. They strap you head down and then radiation machine starts working for about 5 minutes or so. I would just close my eyes, stay still, and think about surfing or playing at the beach. As treatment got into 5th week, then I started having issues like raw skin on my neck, mouth sores, sore throat. See below for products I used to help with all these issues

I had 3 sessions of CHEMOTHERAPY (CISplatin). Each session was around 8 hours each time. Make sure to bring yourself something to either read or watch. Bring your iPad or laptop and watch movies. You are sitting on your ass all day.

I hate shots, but oh well, I just grinned and bear it each time. Not bad once they get IV into you. Big hint: You need to bring something to eat for lunch. But do NOT bring anything favorite to eat. Because your body will associate this food with chemo treatment and you will not be able to eat your favorite food for the rest of your life. Trust me… I read this in this forum and ignored and they were totally correct. I cannot eat one of my favorite foods now. Even the thought of my favorite food makes me nauseous and sick to my stomach.

I will break down the pain with treatment into several sections and let you know what I used to help resolve each issue.

Skin and throat pain in area of radiation treatment.
If you are like me, the radiation people radiate both the cancer in the throat area AND radiate all the lymph nodes in the throat and lymph nodes in back of neck area (who would have known there were lymph nodes in the back of the neck??). So the skin area affected was much larger than what I initially anticipated (so make sure to ask your radiation doctor about this).
So my entire neck area was being radiated and started becoming red. Based upon what I read on numerous websites, I started doing the following main things:

Throat pain in area of radiation treatment (i.e. tonsil area). I read on this forum about people taking L-Glutamine Powder both before, during and after treatment. My wife is an acupuncturist and she said this stuff sounded like a good idea. So I would take 1 teaspoon in 8ozs of water, three times a day. I would gargle the solution for about 30 seconds before I drank it. I started right before treatment started and continue taking all the way through treatment until about 1 month after last treatment. My throat got sore during treatment, but not really that bad. I could drink and eat soft foods during the entire time. My radiation doctor was amazed. He said that most people are super sore in their throat and can barely eat anything without severe pain. The actual product I purchased was NOW Foods L-Glutamine Pure Powder, 1-Pound. Price runs around $20. I went through two of these bottles.
Here is link to buy from amazon: http://smile.amazon.com/Foods-L-Glutamine-Pure-Powder-1-Pound

I also made my own salt and baking soda mouthwash solution. This homemade mouthwash seemed to really help my sore throat as well. I would gargle around 4 times per day. My recipe was pretty simple. Take an empty bottle of existing mouthwash. Should be around 16oz. in a separate large bowl. Mix 16oz of water (about two cups of water) with 2 teaspoons of regular salt and 2 teaspoons of regular baking soda (NOT baking powder). Then using a funnel, pour into your empty bottle. When ready to use mouthwash, just shake bottle and they take a swig of solution. Gargle for about 15-30 seconds. the longer the better. and spit out. your throat will feel better.

If you follow the above items, your throat area pain should be much less sore during and after treatment and heal much faster.

One thing my radiation doctor did for me…and appears to NOT be standard practice for IMRT radiation. He put a tongue depressor type of device in my mouth area each and every time when I was getting radiation treatment. He said this changes the position of the tongue and alleviates “some” radiation damage to the mouth and tongue area. My tongue was actually in much better shape that most everyone else I talked with…so this seems to be a good idea
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Make sure you get exercise each and every day after radiation treatment. You will NOT feel like doing anything. Tired, foggy brain, soreness, etc. I got on treadmill for about 30 minutes each day and just walked. OR I also got in pool and swam for about 30 minutes. Or do yoga. But do something each day for exercise.

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Make sure you use a Blendtec blender or Vitamix blender to blend your food. I prefer the Blendtec and you can buy from costco. These are the two best blenders on the market and will really help and make food you can easily eat.

Because I followed the above protocols, my pain level never became very high. In fact, my doctors prescribed so many pain medications…I thought my pain was going to be so high…I was actually starting to freak out a little bit. The only pain medications I took were some Tylenol just before going to bed. And i did this rarely.

My doctors said that most patients need to take major pain medications and were very surprised about my low pain level. The doctors were very curious about what protocol I followed to help alleviate the pain. Be aware, that most doctors are not aware about alternative treatments (outside of prescribed western medicine pharmaceuticals).

My motto has always been. What is the worst that can happen by taking these alternative treatments.
Worse case: Spend a little bit of money and some time. And nothing works.
Best case: Spend a little bit of money and some time. And it works great!!
In my case, I spent a little bit of money and some time and my results were great for myself. Do not let you doctor dissuade from trying new things to help with pain or healing, as it is your body (not theirs) and these doctors are not trained in alternative ways of healing. So the uneducated mind says “no”…and remember your doctor cannot usually recommend something that has not been double blind tested and FDA approved. It is your body…so make the decisions that are in your best interest.

This was something I was not expecting. No forums told me about this. And no doctor told me about possible tongue sores. When they radiate your throat they will get parts of tongue radiated as well on accident. Remember, your tongue is “in the way” on the radiation beam. So about 5 weeks into my treatment I started to get these type of canker sores (i.e. radiation sores) on the sides of my tongue. And this hurt more than my throat did. Because anytime you moved your tongue or tried to eat/drink something….it would really hurt. I asked my radiation doctor about these tongue sores and he said there was nothing to do about it. Of course I said “What the fu..?”, there must be some way to alleviating the pain and healing these sores. They almost look like canker sores on the sides of the tongue. So guess where I did my first search…Amazon.com again. And I found this super cool product that is used by people that have canker sores. So I ordered and said to myself again, what is the worse that can happen. Spend a little bit of money and time…and it works great. So guess what…it worked wonders. It hurts like hell (for about 5 seconds) to apply the affected areas. But afterwards the pain in deadened and a thin film of coating covers the sore area. Amazing technology. I have no pain for about 3-4 hours. I used both during daytime before eating and also right before going to bed (so I would have no tongue pain while sleeping). And ironically, when you apply to the sore area, you need to swallow after applying. And amazingly the medicine would go into my throat area when I swallowed my salvia and my throat would actually be less sore. Go figure.

Here is the actual product I purchased from amazon: Canker-Rid – Get Immediate Relief and Heal Canker Sores from Durham’s Bee Farm.
Here is link to buy on amazon: http://smile.amazon.com/Canker-Rid%C2%AE-Immediate-Restore-Quality-GUARANTEED
Directions: For sores inside the mouth, dry the affected area with a tissue. Then use a q-tip to apply Canker-Rid directly to the sore. The pain from the sore will stop almost immediately.
The stuff is actually made from bee pollen. Those amazing bees are helping my mouth sores:))

My mouth sores started to go away pretty quickly after radiation treatment ended.

After treatment ended and feeding tube was removed, I started eating regularly, but the top of my tongue hurt while eating. Almost any food would irritate the top of my tongue. Really nothing to do about this particular issue. Just grin and bear it…I was told. After about 4 months this all went away. There is some pain medication mouthwash you can get from your doctor (called Magic Mouthwash). I tried it and did not work for myself.

Because I was so freaked out I would have lots of pain (and I did not want to take heavy duty western meds), I actually went to go see a MD and get a prescription for medical Marijuana. Doctor was super knowledgeable and he told me that many cancer patients use medical marijuana to help with their pain (without the large side effects of western meds). I filled my prescription but never had to use the stuff, because my pain was actually really low. But this is something you investigate yourself…if you live in a state that has legalized marijuana for medical use.

Make sure your doctor refers you to RN or someone that specialized in helping teach you swallow exercises. This is SUPER IMPORANT. As when you have feeding tube, most people rarely eat for many months because their throat hurts so bad. So the old saying is true, if you do not use it…you will lose it.

If you do not swallow or use your tongue for a long (or even a short period) you will quickly lose your ability to eat food again…which would super suck…especially after all your hard work going through radiation/chemo treatment. They will teach you tongue and mouth exercises to do several times each day to help keep your swallow reflex working. Do NOT ignore this…as a little bit of inconvenience and hassle…will save your ass later on. I did this exercises everyday, which was painful and a hassle. And Fortunately, I was able to somewhat eat throughout my treatment. And I got off my feeding tube as quickly as possible. So 7 months later, I am able to eat almost anything. The only lingering issue is some jaw joint pain where they radiated my mouth. Hurts if I open my mouth really wide. But I assume this will be get better over time.

When going through chemo treatment, everyone is given anti nausea drugs. And yes, you will definitely need these drugs. The danger of not taking these drugs is you are going to be throwing up the entire time…for numerous days in the row. So you would not be able to keep any food or drink down. And you will start to dehydrate and losing a lot weight. And get very weak. Not good when you are going through this nasty treatment of radiation and chemotherapy…which is already kicking your ass. So take your anti nausea drugs and follow the directions for taking them. The only major issue i had with these drugs is constipation. I have never had constipation in my entire life. I have one or two bowel movements every day. So when doctors told me I should take anti-constipation meds during chemotherapy…I ignored them. And man was I wrong. the first chemo treatment, I did not have a bowel movement for almost three days. And when I finally did, my bowel was so hard and big, that I torn my hemorrhoids and start bleeding alot. And of course the new pain associated with the damaged hemorrhoids. So do not let my mistake happen to you. My wife ripped on me and bought the following from amazon.

Product was called: Senokot, 50-count Box
Contains the gentle and natural laxative ingredient shown to be effective in 50 clinical studies
http://smile.amazon.com/Senokot-0036761830050-50-count-Box

Once I took this Senokot, I was like a “new man”. Make sure to take this laxative during your entire chemo treatment and several days afterwards.

I am now approximately 7 months after my last treatment. My salvia is only about 20% of what I had before treatment. I am considered lucky, as many people lose all their salvia glands. But my saliva appears to be getting better each and every month. After cancer treatment, progress is measured in months (no days) as you will see little progress on a day to day basis. But when you look at each month, you will see progress.

Also my taste is about 50% level right now. I am able to taste certain things well and other things not well. But oh well…at least my taste is coming back. My doctor said it will take about 12 months before most taste comes back.
** I will be adding more to this over the next month or so.