Jim,

I'm going to share my experience here, I don't like to open up about my issue with pain meds but maybe it'll help you. During radiation and chemo (16 months ago) I was having tremendous pain as my primary tumor had destroyed my right mandible. I started with hydros 10/325 and kept maxing out my tylenol limits daily, so they upped me to Oxycodone and eventually was up to 30mg every 4 hours. By this time I can't remember being in pain, just feeling the need for more pain meds.

My RO then decided to put me on Fentanyl and I was dialed up to 75mcg/hr which knocked my pain and me out until my body adjusted to it and then my pain was managed well however I was more lucid then when I first started it. I was givin 5mg Oxycodones for any breakthrough pain I may have had but rarely used it.

After my surgery though I was in a lot of pain and my fentanyl was dialed up to 200mcg/hr and was given 30mg Oxycodone tabs for breakthrough pain and used them here and there. About 3 months after surgery we began dialing down the fentanyl slowly, 25mcg/hr reduction every 30 days and finally got down to 100mcg/hr and only 5mg oxy tabs for breakthrough. I was experiencing massive neck cramps, jaw pain and nerve pain (crushing and burning) on the right side of my face where my facial nerve was damaged during the surgery as well as pain in my leg where they took the tissue for my flap and my fibula to replace my mandible. I kept at 100mcg/hr for several months and then finally got to a place where I wanted off the patches as I was tired of the side effects of the pain meds and having to go through "mini withrdrawel episodes" every 3rd day (patches rated for 72hrs but mine only seemed to last for 60 or so but my insurance would only allot my supply for the rated hours) and had several instances where I was caught without pain meds and started wiggin out badly.

Under the supervision of my PCP I dropped 50mcg/hr in a month, however at some expense, my moods and overall wellbeing shot to hell. So at the request of my wife we've stopped dialing down for a while. During this time I was popping around 30mg/day of oxy as well as I found that it gave me a high and allowed me to function "normally" for about 4 or 5 hours before crashing hard. I suffer from CRF (cancer related fatigue) and doing anything physical would wipe me out but found that I could pop a few 5mg tabs to keep me going when needed.

I hated this feeling though, I was an athlete and very active person before cancer and had never taken any type of drugs in high school or college and didn't start drinking alcohol until I was 23 and then only socially and never when training for a fight. Having to live like this made me feel like an addict/junky and truly embarrassed me as it is so against who I was, but if I wanted to go out with my family shopping or with friends boating or anything, I'd have to pop 10mgs with coffee to give me 4 hours of activity.

Presently I found a solution for my CRF in 5 Hour Energy shots and have stopped popping my Oxy tabs (YAY!) and my pain levels are managed. I'm currently still on 50mcg/hr fentanyl patches however am going to start to dialing down again (under my PCP's supervision of course). I am probably going to check myself into a rehab for the last 25mcg's of the Fentanyl as I don't want my family to see me in bad shape like that...but I feel I'm ready for it.

Anyway that's my story to date, I hope it helped, it helped me actually telling that story and admitting my issue. I know my ENT didn't get involved in my pain management or any other scripts, all of those were done through my MO and then my PCP (my MO was my PCP for my 1st year then I got a local PCP). He didn't think the drugs were his forte so he left them alone.

My opinion though is it is important to have an exit strategy with your Primary Care or your Oncologist on any of the opiates as they can be trouble.

Good luck, sorry for the novel

Eric