Stopped being able to eat and barely swallow water on Thursday afternoon. My throat from my chin to my collar bone felt like it was literally on fire. I'd equate it with pouring salt on 40 canker sores at the same time.

Nurse checked me over before treatment; started IV for dehydration and located Dr seeing pt's. Luckily for me, my Dr showed up at that time. Diagnosis; lots of radiation sores in mouth, severe yeast infection in throat, Another med. Too kill the fungus. It's working.Thank God.It was so bad that I was very seriously thinking I would have too quit. I literally couldn't stand the pain.

I actually have a high pain threshold. I usually take 8-10 percocet daily for my arthritis. My arthritis is severe and involves my entire body. I had upped the percocet to 12, the max you can take, with little relief. Now I wait while my 3 Drs decide on pain control. I am unable to take
Oxycontin. The usual next step in pain control.

Hi Sweetpea,
Have your doctors ever mentioned Fentanyl patches? I know they helped Ron a great deal. They deliver a slow, steady dose of pain relief for 3 days. Ron only took Percocet for breakthrough pain while on the patches. I'm sorry you are having such a hard time. I remember the awful mouth sores and thrush. Good luck, hope you feel better soon.
Lori

I wonder why you're not able to take Oxycontin--it's a long-acting form of Percocet without the Tylenol. Maybe a cost issue.
Sorry you're feeling so bad; sounds rotten. Will be anticipating a post noting that you're doing a bit better soon!

Hey Sweetpea

sorry to hear you ar having such a rough time.Rob got thrush very early on as well and it was a real killer in the pain stakes.Ask for the patches and some sort of liquid morphine for breakthrough pain that should help providing you can tolerate them ok.

love liz

I hope you find some pain relief soon. I had consultations with our Pain Management clinic and was on morphine and later fentanyl patches. I will be thinking of you.

Donna

A lot of us got thrush. I didn't get it until post Tx and I've had it twice and it alone is very painful so I can only imagine dealing with it AND the mouth sores at the same time. UGH

yeah I do find it strange that you can take percocet (oxycodone and acetaminophen) and not oxycontin which is just timed released oxycodone or oxy hci...maybe you have issues with the hydrochloride. However due to having a tolerance to opiates you should be able to get on the fentanyl duralgesic patch system which is much stronger then your percocets and oxycontin. It's nothing to play around with for sure, I've been on it for over a year now and know the good and the bad of it but if you need pain management then it's the ticket. You can also get the fentanyl lollipop for breakthrough pain...don't get too excited for it though as it doesn't taste near as good as I'd hoped.

Dan had thrush 3 times (2x during treatment) and one after. It was amazing how his pain went through the roof until the thrush was under control.

Sweetpea, talk to your doctor about the possiblility of thrush returning and ask to keep an rx of the medication at home.

The first time Dan had thrush it was Sunday and I waited until Monday when we went in to get the Rx...by that time the thrush had spread at an unbelievable rate. So the next time we found it at 11:00 at night and I called the doctor immediately and drove to a 24 hour pharmacy that was an hour away so we could get a jump on it. After that, I finally asked to have an rx that I could have at the ready. They were reluctant because the medication is hard on the liver or kidneys (or both) if over used. But, I was getting pretty darned good at diagnosing. As you will be too if you ever get it again.

The good news is that once you get the thrush under control the other pain will likely seem oddly manageable. Thrush sucks!!

Hope you are feeling better soon!!

Fentanyl is definitely the way to go. It will manage the pain in short order. You will also need a fast acting opioid for breakthrough pain (like morphine). There is no reason for you to suffer like this. Adequate pain management is a basic patient right - demand it!

What you have heard about thrush is true as well. It will make the pain much worse and is dangerous as well if it goes into the esophogus or systemic. It can actually be fatal.

Sweetpea, I wonder if taking so many percs is making you immune to them. I have been taking them for 11 years and 12 would last me 6 days or more. I have to be really hurting to take one and then I usually cut it in half. They still help with the pain if I take them whole. I'm supposed to take 8 a day, but never have, or 2 every 4 hours.

I told my docs that the mouth sores were "Like having a mouthful of bees." This has diminished over time. I hope yours does to. Like Gary said, you have the right to not suffer.

The fentanyl was the ticket for pain mgt - w/breakthrough meds to assist - it worked, but I'd add that coming off the fentanyl was a real mess. At the last 10 to 15 mcgs and lower, I couldn't sleep, couldn't get comfortable, legs jumping/twitching and lots of up/down to bathroom to urinate - all night long every 30 minutes - for 3-5 weeks. Coming off that was one of the worst treatment outcomes. ...However, given the rough course and what pain I experienced, I can't imagine not having it when I needed it... those 3-5 weeks of withdrawal were probably worth the 3-4 months of pain management.

Hi Sweetpea.
Martin also had thrush post tx with mouth ulcers. They prescribed something for the trush and some gelKam (not sure of the spelling) for his ulcers.
I hope you feel better soon.
C