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.