Radiation Pain

My husband SCC of the right tonsil with neck lymph node involvement. He will start a six week treatment one to two times daily of IMRT radiation on  Tuesday. What experience have you guys had with pain? He is asking....immediate or progressively worse? Does it hurt while your on the table?  

DeniseB

Hi DeniseB,

No, the IMRT machine does not cause any pain on the table, although I found the sound of the IMRT machine was not very pleasant (I used to count the total time the machine was on as a diversion).

The side effects of the radiation will come with time.  Rawness and pain in the mouth and throat, difficulty eating (I did not get a PEG), burns on the neck (blossomed very late and after the end of treatment).  There are other side effects with the chemo (if he is having that).

The good news for me was that it was all manageable.  Eating will be very, very difficult, not just due to the pain but also my taste buds were affected so that food was literally repulsive.  I settled on a tolerable meal which I ate 3 times a day (you've got to get the calories, no matter what):  eggbeater omelet with cheese (and sometimes ham), 2 Boost Plus, tea with honey.

Anyway, stay on top of the side effects, get medications that work (it may take a few different meds to find what works), get the calories and liquids, try to keep active.

Best wishes,

Chris

Just to add a little to what Chris mentioned. Make sure to use a lotion on his neck several times a day. It will help with the redness of the burning effect of the Radiation. I used Kerri lotion and still do.

Also, I made a mixture of 1 tablespoon of baking soda and 1 tablespoon of salt in a quart of water and mixed it up. I would gargle with this as often as I needed to. It helped me with the sores that we all get from the radiation. My Oncologist was surprised that I wasn't taking meds in the 4th week of Radiation. I told him I gargled very often. I tend to over do some things.

As Chris mentioned, as many calories as possible. They don't want anyone lossing weight and moving in the Mask during the treatments. The foods will either taste like cardboard or Aluminum. I found that anything that I ate or drank, had to be at room temperature or it would feel like it was burning my throat.

Take Care

On 5/3/2008 Chrismd wrote:

Hi DeniseB,

No, the IMRT machine does not cause any pain on the table, although I found the sound of the IMRT machine was not very pleasant (I used to count the total time the machine was on as a diversion).

The side effects of the radiation will come with time.  Rawness and pain in the mouth and throat, difficulty eating (I did not get a PEG), burns on the neck (blossomed very late and after the end of treatment).  There are other side effects with the chemo (if he is having that).

The good news for me was that it was all manageable.  Eating will be very, very difficult, not just due to the pain but also my taste buds were affected so that food was literally repulsive.  I settled on a tolerable meal which I ate 3 times a day (you've got to get the calories, no matter what):  eggbeater omelet with cheese (and sometimes ham), 2 Boost Plus, tea with honey.

Anyway, stay on top of the side effects, get medications that work (it may take a few different meds to find what works), get the calories and liquids, try to keep active.

Best wishes,

Chris

Thanks Chris! This info from first hand experience will make him feel a lot better!

DeniseB

On 5/3/2008 Pop-Pop wrote:

Just to add a little to what Chris mentioned. Make sure to use a lotion on his neck several times a day. It will help with the redness of the burning effect of the Radiation. I used Kerri lotion and still do.

Also, I made a mixture of 1 tablespoon of baking soda and 1 tablespoon of salt in a quart of water and mixed it up. I would gargle with this as often as I needed to. It helped me with the sores that we all get from the radiation. My Oncologist was surprised that I wasn't taking meds in the 4th week of Radiation. I told him I gargled very often. I tend to over do some things.

As Chris mentioned, as many calories as possible. They don't want anyone lossing weight and moving in the Mask during the treatments. The foods will either taste like cardboard or Aluminum. I found that anything that I ate or drank, had to be at room temperature or it would feel like it was burning my throat.

Take Care

Pop-Pop,

Thanks so much for the feed back!! We had an analogy of "holding your hand over a hot fire" that really was frightening!!! We appreciate the quick feed back from the group--maybe we will both sleep better tonight.

We'll be sure to keep lotion and salt water available at all times too!!

DeniseB

DeniseB, if it is of any comfort to you both, I am out from my radiation treatment  3 1/2 years now. This is only my 2nd post on this site. I was directed here by a person from another cancer site. I was stage 3.

Take Care

Thanks Pop-Pop the  31/2 year survivor!!!! My husband and I appreciate the messages!!!!!!

DeniseB

Use all the Biotene products ( toothpaste w/ infant tooth brush), mouthwash, gum. Cold humidifier at night to help dryness. Biafine worked for me for skin burn. Fist couple of weeks you wonder what the big deal is. Then it starts to hit, the dryness, lost of taste, mouthpain.BTW: Get Magic mouthwash from the dr. Ask for a little extra lidocaine in it.

Also take L-Glutmanine powder for sores. It really helped and I also got the Ethol shots before every treatment. Glad I did. I'm two months out and just about 100% w/ everything.

Hang in there and God bless.

R

Thanks Rick! I sure hope we can slide through this without too much pain. It seems most people struggle with the mucus...at least it's mentioned more than pain. That is a good tip to request exra Lidocaine in the magic mouthwash. A lot of people have mentioned the LGlutmamine powder and it is still unclear about the dose...I think the milligrams and grams were causing confusion---how much did you take? I'll pursue the Ethol injections for Larry.

I continue to pray that your bleeding mouthsore heals and is not an indicator of more issues!

DeniseB 

Take the L-Glutamine, 5 grams 3 - 4x's per day in powder form mixed with whatever drink. I mixed w/ Resurgex.

Most people can't tolerate the Ethol shots. I was lucky, I did up to the last week, then had to stop. Got way sick from them. But if you can tolerate them, they really help.

Thanks for the thoughts on my mouth. I truly think it is getting better and will turn out to be nothing.

God Bless, keep up the fight!

Rick