CancerCompass message board discussion started by DeniseB on 5/3/2008 http://www.cancercompass.com/message-board/message/all,23698,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 DeniseB Sat, 03 May 2008 00:00:00 GMT 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 Chrismd Sat, 03 May 2008 00:00:00 GMT 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 Sat, 03 May 2008 00:00:00 GMT  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,ChrisThanks Chris! This info from first hand experience will make him feel a lot better!DeniseB DeniseB Sat, 03 May 2008 00:00:00 GMT  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 CarePop-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 Sat, 03 May 2008 00:00:00 GMT 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 Pop-Pop Sat, 03 May 2008 00:00:00 GMT Thanks Pop-Pop the  31/2 year survivor!!!! My husband and I appreciate the messages!!!!!!DeniseB DeniseB Sat, 03 May 2008 00:00:00 GMT 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 rick51 Sat, 03 May 2008 00:00:00 GMT 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  DeniseB Sat, 03 May 2008 00:00:00 GMT 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 rick51 Sat, 03 May 2008 00:00:00 GMT Hi, I am 11 months out from completing 35 rads and 3 rounds of chemo for tonsil cancer. Throughout the course of my treatment, I only used advil for throat pain management. I also was able to continue solid foods throughout TX. so there is hope! It's a little rough, but doable! Girlcat36 Sun, 04 May 2008 00:00:00 GMT Denise,I am in my 4th week of treatment 1 dose of cisplatin on mondays and 5 days of radiation for 7 weeks, from post surgery primary of the right tonsil and neck dissection all margins were negative ....Ive been fortunate thus far to have very minimal effect from treatment, and seem to be following all the recommendation of the goup as well.Oral hygiene: Biotene and few times a day and in between the use of a t-spoon of salt and baking soda to 20 oz of water. brushing several times a dayas for skin care, Ive been using Eucerin, its a water base product and I have been happy with the results thus far.Lots of protien and glutamine and soft foods in small meals 5 to 6 times a dayIve had a problem with metallic test in my mouth, lemon flavored water seems to help and  use of plastic utensilsI wish you and yours the best  BradnOhio Mon, 05 May 2008 00:00:00 GMT Hi there!  My husband had SEVERE pain after the second radiation treatment.  It was so bad, it literally brought him to his knees.  I had nothing but Vicoden at home, and nothing was helping.  Turns out he had an infection, and it's cleared up now.  We were both freaking out, because it was just way too soon into treatment to be in that kind of pain.  Today is treatment number 10 of 33, and he's just now starting to complain of a 'sunburn on the inside' of his throat, and he's having a little bit of stiffness in his jaw.  My poor husband had gone from being healthy, to a biopsy, then tonsillectomy and neck disection two days later.  2 weeks after that all of his upper teeth were pulled.  So, the natural balance of bacteria in his throat was all out of whack, which allowed the infection to take over. Geez, I'm babbling. In other words.  No, it does not hurt to actually have the radiation treatment.  And should take a few weeks before you start to feel the effects.  My best advise is to read read read this entire board.  Stock up now on things you think will help (L-Glutamine, cool mist humidifyer, etc.)  Remember that everyone is different, and everyone reacts differently to these treatments.  Babzilla Tue, 06 May 2008 00:00:00 GMT Hey Babzilla,Thanks for your reply. I had read your email before about the terrible time your husband had immediately after his treatment started. His info is what spurred me to try to get a clearer picture of what others had experienced. It sounds like he was unfortunate in that he got an infection. I 'm sure he was glad there was an explanation and this was not the expected. He certainly needs a break with all that he has been through already.My husband began radiation today and has done alright--physically he is good, but he is still very anxious. I think that will get better as he gets further along. We moved out of state to get treatment in Fla. and are staying at the American Cancer Society's Lodge. There is a wonderful support group of patients. Maybe as Larry gets to know people with similar situations he will relax a little.Thank you again for your email. Take care of yourself and give your husband 'lots of hugs because Cancer Sucks!!!DeniseB DeniseB Tue, 06 May 2008 00:00:00 GMT  On 5/5/2008 BradnOhio wrote:Denise,I am in my 4th week of treatment 1 dose of cisplatin on mondays and 5 days of radiation for 7 weeks, from post surgery primary of the right tonsil and neck dissection all margins were negative ....Ive been fortunate thus far to have very minimal effect from treatment, and seem to be following all the recommendation of the goup as well.Oral hygiene: Biotene and few times a day and in between the use of a t-spoon of salt and baking soda to 20 oz of water. brushing several times a dayas for skin care, Ive been using Eucerin, its a water base product and I have been happy with the results thus far.Lots of protien and glutamine and soft foods in small meals 5 to 6 times a dayIve had a problem with metallic test in my mouth, lemon flavored water seems to help and  use of plastic utensilsI wish you and yours the best Thanks BradnOhio,We appreciate the input. We'll plan on the salt and baking soda rinse and biotene. I'm checking on the use of the Glutmine use also with our oncolgist. I just heard about the plastic utensilsl use tonight from another patient so we will get those too!!!I hope you continue to do well with your treatment!!! All of the feedback from the group is paving the way for the rest of us, so thank you for sharing!!!!!!!DeniseB DeniseB Tue, 06 May 2008 00:00:00 GMT  On 5/4/2008 Girlcat36 wrote:Hi, I am 11 months out from completing 35 rads and 3 rounds of chemo for tonsil cancer. Throughout the course of my treatment, I only used advil for throat pain management. I also was able to continue solid foods throughout TX. so there is hope! It's a little rough, but doable!WOW--you have got to be the poster child for pain tolerance---that is awesome and you are very fortunate!! Congrats for being a survivor!! Your story certainly gives us hope.DeniseB DeniseB Tue, 06 May 2008 00:00:00 GMT  On 5/6/2008 DeniseB wrote:  WOW--you have got to be the poster child for pain tolerance---that is awesome and you are very fortunate!! Congrats for being a survivor!! Your story certainly gives us hope.I don't think I have a high pain tolerance. I just did not read the horror stories before I began treatment--so I did not expect a high level of pain. I told my doctor's not to discuss side effects with me. Therefore, I was not definately anticipating being on morphine and fentanyl patches. Also, I had absolute faith that God would increase my tolerance a the pain increased. So, yes, radiation without narcotic pain relief is rare---but it can happen. The mind is very powerful.I like to throw my story out there to balance out all the 'horror' stories.One thing that I always did that may have had some bearing on having less pain----I religiously did neck and tongue stretching exercises. If you think about it, radiation is all about burning, scarring and strictures. If you can keep your neck and throat flexible, stretched, and moving, the better off you'll be.  Girlcat36 Wed, 07 May 2008 00:00:00 GMT