I have completed 12 Radiation treatments and already I am having trouble swallowing. I was hoping that I would get a little further before this problem would start.
I have 21 treatments left, I guess I should be glad I have a peg tube, but I thought it would come into play further into treatment.

I was prescribed something called magic mouthwash, I am also using salt, baking soda and water. The only thing that goes down easy is milkshakes.

Anybody have any other ideas to ease the pain.

Thanks, Ray C

Hi Ray,

I was in the same boat as you 4 years ago about this very time. The doctors can tell you what most people experience, but they can never tell you exactly when the symptoms will hit you because you body reacts differently.

I too had a mouthwash that had 4 meds in it two being Benedryl and a topical anesthetic to basically numb everything in the mouth. I don't remember what the other two were but it worked. I was not on any other pain killers through the whole process.

As crazy as it sounds now, I wish I had been stretching my mouth and continue to use it during the radiation. You really want to avoid trismus if you can at all costs. Talk to your doctors about it and see if they can recommend a swallowing therapist that may be able to help you through the radiation. I did my swallowing therapy afterwards which worked, but I wish I had kept my mouth moving during radiation. It would have made recovery mush easier.

Hang it there and feel free to ask me any questions on or off the forum.

Jim

Ray the actual "magic mouthwash", or "pink magic" as it is sometimes referred, typically has liquid morphine and lidocaine in it.

You may need to graduate to something stronger.

It is a swish & spit - you don't want to numb your gag reflex anatomy. Effects lasy for about 1/2 hour at a time.

Keep swallowing by mouth if you can - keep the muscles from atrophy.

The only relief I got was the majic mouthwash and I swallowed it to help reduce the pain all the way down the throat when I ate or swallowed boost or milkshakes. Although it seemed the majic mouthwash only helped for a couple of minutes. 3 advil or other pain killers helps to. Talk to you doctor about any other pain management they can recommend but there isn't too much. This was the hardest part of the treatmenttrying to eat solids or liquids and getting through the pain of it.

Ray-You will come to really love milkshakes! Frappachinos from Starbucks were my second choice. Keep the weight up while you can during treatment, just remember to brush your teeth and use your flouride treatments. Can't tell you enough to keep stretching open your mouth even if it hurts. It is really a bummer to find out you can't open it wide enough to get a sandwich in when you get to eat again! Best wishes to you with your treatment! - Kris

Ray,
I am right there with ya! I am 10 treatments in(33 total) and have lost my sense of taste and my saliva glands are on strike big time! I do not yet have a PEG and want to be as hard headed about getting one as I can be. Thanks to everyone who has mentioned the mouth stretching exercises, I hadn't thought of that and am sitting here now stretching and feeling it! The worst thing for me right now is yawning, OUCH! But anyhow, Ray, we will get through this crap and be better off for it!

BILL

Ray, since you are being treated at Winship, who is MO, and ENT? Maybe we have a couple of docs in common.

Bill,

For a while I had to keep my mouth closed while yawning because it hurt to much. I learned to control how wide I would let my mouth open on yawns and eventually I was back to yawning full mouth. Shaving and turning your neck like looking over your shoulder also helps to stretch out the tightness.

Bill, My son also had trouble yawning and had to be careful not to open his mouth too wide for a while. Also, watch out for sneezes. When a sneeze would come unexpectedly, he would try to suppress it while looking for a tissue or towel and it really hurt. I kept telling him not to worry about the fall out from the sneeze - that it could be cleaned up - but after that we made sure he had plenty of tissues or small towels wherever he was that he could reach for.

Ray - My son also used Magic Mouthwash. It worked for a while and then it wouldn't, but when he went back to it it worked again. He drank lots of milkshakes, too but his taste for the the different flavers changed constantly. I'm so glad you and Bill have each other to compare notes.

Hi Ray,

Last fall I had 6-1/2 weeks of radiation (both sides) for tonsil cancer (I first had surgery which removed the tonsil and many lymph nodes on the left side of my upper neck), with a daily Ethyol shot and weekly chemo (cisplatin and Erbitux).

I would highly recommend Boost Plus (or equal) rather than milkshakes due to greater calories with less volume. I had typical eating problems, then settled on 3 identical meals per day, each consisting of 2 Boost Plus (360 cal each), egg-beater omelet with cheese (sometimes added cut up ham lunchmeat), and tea with honey - about 2700 calories per day. I used less than 1 tsp of the magic mouthwash per meal (I swallowed it), although the eggs went down quite easily. I also used the salt/baking soda mix which was very helpful. I got some topical canker sore medicine from my dentist, but only needed it a few times.

With this diet I was able to hold my weight and avoid a PEG.

Best wishes,

Chris

Hi Ray,

Last fall I had 6-1/2 weeks of radiation (both sides) for tonsil cancer (I first had surgery which removed the tonsil and many lymph nodes on the left side of my upper neck), with a daily Ethyol shot and weekly chemo (cisplatin and Erbitux).

I would highly recommend Boost Plus (or equal) rather than milkshakes due to greater calories with less volume. I had typical eating problems, then settled on 3 identical meals per day, each consisting of 2 Boost Plus (360 cal each), egg-beater omelet with cheese (sometimes added cut up ham lunchmeat), and tea with honey - about 2700 calories per day. I used less than 1 tsp of the magic mouthwash per meal (I swallowed it), although the eggs went down quite easily. I also used the salt/baking soda mix which was very helpful. I got some topical canker sore medicine from my dentist, but only needed it a few times.

With this diet I was able to hold my weight and avoid a PEG.

Best wishes,

Chris

I have now had 15 treatments. I have found something that really seems to help the sore throat. It is Goodys powders. Within 5 minutes of swallowing down the powder, I can swallow with very little pain.I am not quite sure why this works, but it does for me. I have been able to eat several times a day after taking the powders. Each seems to last about 4 hours.

I have found 2 things I can eat, oatmeal & pancakes. They both seem to go down fairly easy.

My MO at Winship is DR Shen. He seems very good.
I have 2nd chemo on Tuesday.

Ray C

My husband has had 15 rad TX so far and has come to a point that he can not talk and is in alot of pain from the mouth sores. We have plenty of meds but very little response. Roxicet suspension does help a little. He does have a PEG but is so sick that he is barely using it. He is talking about taking a break from rad. Don't know if this is smart. Chemo is tomorrow which I question due to the vomiting along with the sore mouth. We see the Dr today and will report his decision later this evening. Hopefully soem suggestons will be given that will aid all.

Linda & Todd --

You need o meet with your oncology nurse and doctor and get !- adequate anti-nausea relief (what is Todd taking?) and 2) adequate pain relief (what are they giving him?)

Re te nti-nausea, he should be getting a serotonin-uptake-type drug by IV before chemo infusion (probably Anzemet, which lasts for 14 hours) and then, afterwards eiher Anzmet tabs, Zofran (8 hours) or Kytril. (Compazine may be given as well -- both drugs can be taken at same time -- but Compazine is NOT good enough on its own in almost all patients to stave off nausea from Cis- or Carboplatin.) Anzemet, Zofran and Kytril are expensive drugs but they can completely control nausea in *most* patients. Barry told me "they were worth every penny and then some!" Our chemo nurse at Hopkins (in the "chemo class" they give before treatment) said -- "there is no excuse for acute nausea anymore with chemotherapy - we have the ability to control it, please talk to us immediately if we are not doing our job." That having been said, a few patients are not responsiive or are allergic to these drugs and for these they try acupuncture, so this might be investigated if Todd doesn't respond to the usual drugs.

Re pain -- first, make sure Todd does not have thrush (yeast infection) which often crops up at tis stage. It can cause immediate burning pain upon eating, well before the onset of radiation-induced mouth sores. Thrush can be controlled by both oral and topical meds, but usually not eliminated until after end of radiation. You just try to keep it under control...

Mucositis can be helped by GelCare -- or in its over-the-counter form -- Rincinol; a mouth rinse of salt/soda repeated many times a day; a rinse of 5% l-glutamine (get powder at GNC). Wtahc the mouth-numbing solutions, they can numb too much, leading to food aspiration (which happened to my husband).

The main thing is ADEQUATE PAIN CONTROL. Some doctors are really bad on this (here's your bullet, just bite on it...) It is almost certain Todd will need to go onto opiate drugs, either Oxycodone or its timed-release form, Oxycontine. My husband didn't do too well on the former (constipation, sleepiness) and did much better on fentynal patch (Duragesic) -- but folks vary in their reaction. You as care-giver may have to be very vigorous and insistant that Todd get the pain relief that he is due under patient's rights.

This treatment is hard enough without making it worse by inadequate nausea and pain medication. If someone has to stop treatment because of this, then it is (in most cases) a failure of the medical team.

Gail

Oops, saw a typo (actually, several --pre-coffee I'm afraid) but Anzemet lasts 24 hours (not 14) -- sorry,
Gail

Linda and Todd, I'm not sure what kind of chemo Todd's doing but I'm doing cysplatin with a 125mg Emend, 1or2mg Kytril, and dexamethasone 4mg 30 minutes before treatment. This is followed by 1 180mg Emend a day x2 days, 1 1mg Kytril 2xdaily for 3 days, and 2 4mg Dexamethason 2xdaily for 5 days. They also gave me another nausea med that I have not had to take. But I had one week of mild nausea but it seemed coincide with everything tasting repulsive. I just had my second chemo and don't feel ill at all and didn't the first time. Maybe this will help. I wish you luck and I also understand to that even after the last rad treatment you still feel as if you are having them for around two more weeks. I don't know if it is the same midway though treatment. I know I would hate to have to take time off simply because starting back would be mentally stressful for me. I don't have a bit of experience with what you are dealing with except with the treatment. I hope the info helps and the rest is just my thoughts. You both are in my prayers and I hope you get your answers. Lee

Linda & Todd - About taking abreak from the treatments, my son early on in the treatment had such painful sores in his mouth he also wanted to take a break and I worried about whether that was wise, but I got him to at least go and see the doctor about it. When the doctor saw him, he gave him a week long break and then later on another week long break to heal the open and bleeding sores in his mouth. I felt better knowing it was the doctor's recommendation. Everyone reacts differently and towards the end of the treatment it got really bad again, but my son just kept going because he was really tired of having it take so long. It helps to let the doctor know how bad it is so he can try different meds for pain or nausea and you can get any questions answered. Also, they should be aware of what other meds are involved so they don't interfere with each other. Hope things improve and that things get better really soon.

My nutrionist at vanderbilt has given me Carnation instant breakfast VHC (very high calorie) which is good for 560 calorieseach. Only problem is, I cant stand the smell or texture of it. Doc said try a covered cup and a straw. Other than that I can eat through most of the pain so far and have lost only 7 lbs in 3 weeks of treatment.
Hey ray, how are you doing???

Rob seems to have gone from no problems to the worst problems in three days.At present he is choking on thick green mucous he cant take anything by mouth without choking on it and he cant get the fortisip down at all .his mouth is so sore he cant open it or talk.i am just off to ring the hospital and ask for an appointment.