I just finished my second week of IMRT Radiation and have 4 or 5 more weeks left. The docs told me that I wouldn't be getting these till 4 weeks in, well i got them early.
The docs gave me 3 prescriptions. Oxycodone, ibuprofen and magic mouthwash.
I am wondering if someone else was given something or found something that helped more, or helped the sores heal up quick or any advice anyone can give me would be appreciated. I am in a lot of pain, and trying to fight to keep the peg feeding tube out, but if i cant even drink things without being in extreme pain, I will have to let them put it in.

Please help.

I couldn't stand magic mouthwash, and tried to avoid it unless waas absolutely necessary. In hindsight, it was pretty dumb - anything that takes away the pain is good. You should rinse your mouth with salt and soda diligently, that helps quite a bit with sores. I would take magic mouthwash AND percoset about 15 min before my ensure meal, and that made it easier. I was in a lot of pain last couple of weeks and a couple of weeks after rad (I had chemo too, so that didn't help), and got more and stronger fentanyl patches as well.

Just try everything you can. But rinse rinse rinse. It helps a lot.

It's a long road. A little over a year ago I didn't think I'd make it through. You are young, and that's a HUGE plus. Hang in there. PEG tube is not the end of the world, but if that's what you'll need to survive, then go for it. I managed without, but I had lost a lot of weight, which worked out well since I was overweight to start with.

Rinse your mouth with a combo of salt, baking soda and water. Recipe is aporx 16 oz qater, 2 tsp of baking soda and 2 tsp salt. If it burns decrease the amount of salt or even omit it. Rinse at lease 5 times per day more is better.

Before you eat or drink swish the magic mouthwash in your mouth for several seconds, then spit it out. It should calm your mouth enough to get you thru eating and drinking.

Unfortunately, the mouth sores are a very unpleasant part of rads. Do the best you can with keeping up with rinsing and magic mouthwash. Push yourself to get minimum 48 oz water in per day and 3000+ calories. If you arent able to do that then a PEG tube would be the practical solution. Its not anything most of us wanted to get but it is something that is a tremendous help in keeping your nutrition and water consumption where it should be. Even with a peg tube make sure you still swallow water every single day. Also you need to stretch your mouth open as wide as possible to avoid other problems later.

Best of luck with your treatments.

Christine pretty much said it all. I never got mouth sores real bad but everyone is different. I made sure to do the baking soda rinses often throughout the day. I used the magic mouthwash prior to trying to eat. I had the PEG tube in and I still lost 65+lbs, alot was due to a sensitive gag reflex that would cause me to vomit everything. The radiation was by far the worst part of treatment for me, you can get through this!!!

They say I need the peg tube now. I vomited up my pain meds and the magic mouthwash doesn't numb up my mouth sores. But they are saying they won't put it in till june 28th, which i don't know if that is a good idea. I cant eat or drink anything unless I get the pain meds and magic mouth wash down, and today i wasnt able to keep that down, so today was horrible. Saliva is getting really thick and I have huge sores on my tongue and on my lower gums and around my mucosa to my throat. I just wish there was a way to take something that would take away all the pain so i can get through this. I don't want the peg tube, but i cant do this anymore. And I am only in my 3rd week.

Im so sorry you are having this much difficulty so early in your treatments. Do not give up!!!!!! Keep using the meds to help you eat and drink. If you stop drinking, you will quickly get dehydrated. It will also make it so much harder to regain the ability to swallow later so drink every day.

Are you on the fentanyl patch? Ask you doc about it. Its changed every 72 hours and should take away most of your pain. Do you rinse your mouth with the combo if 16 oz water, 2 tsp baking soda and 2 tsp salt? You can omit the salt if it burns, but rinse at least 5 times per day, it will help. Musinex will also help with the mucous.

Believe it or not when you look back at this period of time next year, it will all look like a bad dream. This is just a short time of discomfort you must go thru to save your life. Keep posting, we are here to help you thru this. Best of luck with everything!

I second what Christine is telling you. Ask for other means of pain control to get you through this. DO NOT give up!
If you need to get the peg to get you through this then do so, just remember to keep swallowing!

I know that each minute of every day is a long process during this time but you can do it! I'm rooting for you!

I do rinse constantly with the mix of soda, water and salt. And they have me on oxycodone, 5mg/5ml 5-10ml every 4 hours and ibuprofen for inflammation 2 times per day. the magic mouthwash does nothing. I have sores all over my tongue part of my tongue. Luckily the transplant part of my tongue has nothing. But now they are saying i have to have the peg tube put in. I would have no problem if they could find a way to numb up the sores, thats the only thing that is making it so difficult for me to swallow right now.

They have scheduled for me to go in and get the peg tube put in on the 28th and couldn't do it sooner, so i have until then to try to figure something out, or I will have to have it in. Already was pretty dehydrated yesterday cuz of these sores. They burn whenever i put any liquid in my mouth.

Saliva is so thick i constantly have to get up and spit it out and rinse my mouth doesn't really help it. Its affecting my speech now, cuz whenever I talk I blow saliva bubbles, or my tongue hurts so i try to guard it.

Have you asked for the fentayl patch yet? It takes about 24 hrs for it to kick in. The medicine is so much stronger than what you are taking. You would only need to change the patch every 3 days and occassionally take some extra pain meds when it got bad.

Try drinking chocolate milk or yoohoo. I drank yoohoo the whole time my mouth was sore, it was soothing and had some vitamins in it plus much needed calories.

Bethers, I sent you a PM about viscous lidocaine. Very surprised your doctors haven't given you some!

D2

I was almost admitted in the hospital today cuz i lost 7 lbs since friday. I just got the fentanyl prescrip today so going to put one on tonight after i shower. They also put a PICC line in my left arm that goes into my superior vena cava and i will have a home care nurse come out everyday to give me 2 liters of rehydration liquid as i am not able to get anything in my mouth without those darn sores burning, and they can't put the peg tube in till the 28th which is a week from today.

I will have to ask about the lidocaine, everything they have given me does nothing for the sores and numbing them. So I will have to ask about that and if they don't respond I will pm you back.

Oh Beth. I am so sorry you are having difficulty with the radiation. Hopefully the patch will help you starting tonight. Just remember that right now u are cancer free and have to go through this to make sure of that. You have a lot of support here and know that you have supported me so much! These tough days are going to get easier and less frequent in due time. For now take advantage of any help that you can get. Please keep me posted. You are in my prayers.

I made it without a PEG but it was not an easy path. I needed numerous IV hydrations and looked like skin and bones. The advantage is that you will have better swallowing function right from the start.
Beth Israel used to spray my mouth with a saline solution after every rad treatment. I also wrapped my teeth and gums in gauze before each treatment. That seemed to help. Best of luck. Keep up the fight and this all will get better.

Ok Bethers - hang in there and keep the lines of communication open.

d

so i threw up three times yesterday, and a total of 4 times today. Rad onc says its because of the pain patch, and that I will get used to it and stop vomiting. But they also gave me a antinausea med but i will pick it up tomorrow. Day 2 of fluids at home, and somehow I gained 3 lbs since monday even with all that vomiting. And I am vomiting blood, but they arent worried about it, they say it's just coming from my throat being irritated from the vomiting. Oh well.
Also my trach wound isn't healing correctly. I had an abscessed stitch from when they took it out, and they took that out, but now its still oozing and ishy. They gave me a antibiotic, but I cant take it because I cant keep anything i swallow down yet.
I tried the viscous lidocaine and i think i diluted it too much, cuz it really didn't numb anything when i tried it. But I will try it again tomorrow after i try the anti-nausea med.

One thing that confuses me though, they said i shouldn't lose my voice, yet this morning, after i woke up and vomited, i couldn't talk unless i screamed and it only came out as a whisper. My dad thinks it's because of the vomiting, but the rad onc thinks it's from radiation. And I am starting to have problems swallowing already. When I am able to drink water it ends up going down the wrong tube most of the time, and I really don't want to have to relearn how to swallow, so I hope they get this figured out and soon.

Also wish I could use something to get the vomit taste out of my mouth. The biotene toothpaste and baking soda, salt and water solution don't do it, and it's really getting old. Even though I cant taste much, i can still taste that.

Only 14 more treatments left, I just want to get through this. Cant help but get scared when all of this bad stuff happens that they don't tell you about that you aren't even going to make it through radiation and will die. Thats how it was for me this morning. Puking up blood, after the 3 puke session this morning, and i couldn't help but be scared and start crying.

I feel so bad for you. Some people really struggle thru radiation treatments while a few sail right thru. Do the very best you can and keep swallowing a few times per day. Try something thicker like chocolate milk or yoohoo. They are soothing to the throat. I too had trouble with water but did ok with the yoohoo and choc milk.

Alot of people lose their voice. I lost mine for 3 weeks towards the end of treatments. If you dont have one, try to pick up a dry erase board and markers at a dollar store. It will come in handy when your throat hurts to talk.

Best of luck Monday with the peg tube. It will be a little sore for a day or 2 after the surgery. You can do it, so far you have been thru so much worse than this.

Hoping your side effects settle down and top making you feel so awful. Hope you are able to keep down some anti nasuea meds to stop your vomiting. Hang in there, less than 3 weeks to go and it will be over. I will keep you in my prayers.

I am so sorry you are going through this. I hope the next 16 treatments goes quickly for you. Can you lowere the does of the patch just a little or try a diffrent pain killer.

Where in MN are you from? I live near St Paul

Bethers, I can't tell you how painful it is to read all this. Damn. Wish I could help in some way.

Numbing: I do hope that the lidocaine helps you. Try it straight if diluting it doesn't do the trick. I also found that just keeping it in my mouth for a minute or two or whatever the prescription said didn't really help. I needed to hold it in there and swish it for at least 5 full minutes to get any kind of numbing effect.

Nausea: I was on Fenergan and then later Carafate liquid. Neither helped. It wasn't until I finally got some of the old tried and true Compazine that I got any relief at all. And that was after three solid months of non-stop nausea. So if what you're getting doesn't help, please ask about Compazine.

Voice: yes, no surprise to hear you're losing yours. Do not despair, it will come back fine. I couldn't speak above a whisper for the better part of 2 months, maybe more. You will get better.

Overall: DO NOT DESPAIR. I know I said this before, but it bears repeating. You WILL get through this. The side effects of neck radiation are horrible. They start out bad and get worse. But they do improve eventually. You have two tough weeks ahead of you and then another period of weeks to a few months where things will be equally tough, maybe even tougher. But everything I've read that you've written here has me convinced that you're a strong and smart person.

Lean on all of us. Ask your doctors every stupid question. Mainly, be of good heart because I'm convinced you're going to be fine.

And I'm never wrong!

With you.
David 2

wendys ~ I live in coon rapids. So not too far from you.

I only have 12 treatments left, and I wish everything would start to get better like a week or two after treatment was done, but oh well. If i have to wait a month or two then so be it.

Vomiting stopped for a day but I just vomited 3 times in the last 3 hours, and that was with a dissolvable anti nausea med. But I think I am vomiting now because of the thick saliva and pain med being the only thing in my stomach, along with not being able to take my med for acid reflux that is caused by my hiatal hernia.

Peg tube goes in on monday, and at first they were saying I would be in the hospital for 24-72 hours, but now they are saying I will go home the same day, so I am not sure what is going to happen.

Benefit is on sunday, and I don't know if I will be able to go or not. 5 hours, and I want to be there, but I am barely awake for 3-4 hours everyday as of right now, so I really dont think I will be able to go. Maybe just if i can go for a few minutes at the end but if i am still doing the vomiting stuff, I probably wont go. So we'll see how things go, but hope every one has a good weekend.

I want to wish you good luck on Monday. Some people stay overnight after having the peg tube placed while others go home. You probably will be a little sore. If you are admitted, they will make sure you get properly nourished and hydrated which could help you to feel alot better. Staying isnt a bad idea if you are given a choice. You have had such a rough time, maybe having a nurse help you would be a good idea. When I had my feeding tube the first time, my hospital sent a visiting nurse to my home weekly for about 2 months (at no cost to me). Ask if that is available to you, it might be helpful.

Hang in there, it will be over soon. Then about 2 or 3 weeks later you will finally start to feel better. Gradually you will improve and start to get back to your old life.

Please post if you have peg questions.

Hi Darlin, I'm so sorry that I haven't been I this site to help like the others. I have been hanging on the American cancer Society Head and Neck site. It's kind of tough jumping from both sites and having the energy. Looks like I'm a few weeks ahead of you. I was like you young and didn't want the PEG; plus I am a RN so I was being stubborn. But my sores got so bad I couldn't eat any more. Finally had peg put in 3 weeks ago. I also was trying to swallow everyday but a soon as the mucus go too thick I had a bad day of throwing up. Threw up 4 times in one day. That is when I lost my voice. The acid from the vomit hurt my mouth so BAD; I was crying and I just wanted someone to come a chop my head off! I use Oxycodone q 6hrs and dilaudid for break through. I also have some liquid vicodin that I take because somedays in the early mornings I was getting low grade temps 99.3. I attribute this to the build up of fluids and mucus at the base of the throat when sleeping. Then I had to try and hack it all up. I'll admit once the peg got in and I didn't want to stimulate my gag reflux so much I'm not swallowing that much so I don't have to deal with the sores. If I do swallow it's very little and it's while I'm taking a shower in case is stimulates gag and I have to throw up. I get then to write prescrition for phenergan and Ativan they really hepled. with nausea and help to relax. Just becarful taking them together because they can really knock you out! I also try to chew and spit out a apple a day to keep my mouth stretched.

My last radiation dose is tomorrow 33/33. Last chemo is on Wed. 3/3 of cisplatin. I know what you mean about wishing the pain stops as soon as treatment ends. But oh well we will both get there. I'm not sure what is more painful now my mouth or my neck I have 2 degree burn on right side. 1 degree on left. Using combination of silvadine cream and Aquaphor. Well, this is becoming to long! I just wanted to say HI and give you my e-mail if you have any more questions. I will try to check this site more often; but like I said I also use the American Cancer site too! God Bless! All we can do is put in Gods Hands now!

Charles

Came in and had radiation at 7:45 am and then went to preop right after. Didn't get up there till 9 am when I was supposed to be there at 8 am because of the storm we had this weekend and it affected the machines so they were way behind. But Went in for surgery about 10:30 is the last time i remember seeing on the clock. Woke up in recovery and stomach just hurt, felt like someone kicked me in the ribs, and sounded like someone had placed a fart machine near me, lol.
But so far they have kept the pain managed pretty well. They admitted me and I will probably be here until at least wednesday morning because I have a peg learning class on wednesday at 8 am and then radiation at 10:45am. Plus they have to get my pain under control, and my acid reflux due to my hiatal hernia under control. So Kinda glad they admitted me. So far it's ok, first time I have had to share a room in the hospital, and I have a chatty roommate who sneaks goodies from her bag and makes yummmm noises when she does, lol but oh well.

Also for some reason that viscous lidocaine doesn't work for more then a minute to numb those sores in my mouth, even though I hold it in there for like 10 or 15 minutes. First time i tried it undiluted it was 10 mins, second time was 15mins and still same reaction, only 1 minute. So peg was a good idea.

Hope everyone had a great weekend and a good week. It's really sunny today, I think that is the 5 day of sun we have had in june, very sad, cuz I cant enjoy it, but there will be so many more I will get to enjoy once I am through this because I am going through this, yay positivity,

Just got out of the hospital last night. Still pretty sore whenever I move or cough, but is that normal for a while? To be sore with movement or coughing/heavy breathing for a while after having the peg/feeding tube placed?

They also sent me home with a temp of 100.6 and said they couldn't figure out what it was coming from and they sent me home on 2 antibiotics and called it good. Not sure if thats a good idea on their part, but we'll see.

Only 7 more treatments to go, cant wait to get through these.

Hope everyone has a good 4th. and those who can celebrate, celebrate extra hard for me as I will be stuck at home.

Well while minor, you have had a small surgical procedure, so some discomfort for a day or two should not be unexpected after a PEG placement. If it doesn't tone down by then please talk to your doctors. As to the cough and the heavy breathing, (chest congestion?) your body is under a lot of stressors. It would not be unusual to catch a cold, or the flu easily, or to have some kind of -not related to the PEG-, opportunistic infection. As before, you need to keep your docs in the loop if this persists after a few days on the antibiotics.