I am 3 weeks since my last treatment! I am still relying on percocet every 4 hours which is the only pain medication that I took during the entire treatment. My ENT is big on not taking pain meds. After my neck dissection he wanted me off them completely in 2 weeks! I was like yea right! lol though he cut me off after 3! He is not the one providing me with them now its my RO and he is very generous with them...complete opposites! He is always asking me if they are strong enough that he has stronger stuff to give me just ask. My question is how long was everyone on there pain meds after treatment? I know as of right now there is no way I could stop, I wake up on the dot at 3.5 hrs knowing its time for me to take a pain pill! I do not want to take too many or get hooked on them. I know everyone is different on the amount of pain they can endure just looking for a couple opinions! Thanks

Jim

Not much help here. My husband only used liquid Tylenol throughout and after treatment. He was prescribed LOTS of different prescription pain killers but hates to take them and got by with Tylenol. Congrats on being done treatments!

Your ENT must be a sadist or else sadly misinformed. I can understand weaning off the fenatyl patches (synthetic morphine) but c'mon percocet? As long as you have pain, keep taking them. The most common perception is that cancer patients get "hooked" on opiates. It is a qualitatively different thing to be taking percocet for post TX pain instead of seeking a high when perfectly normal. The first time around, my RO and MO kept me on percocet and oxycodone for five months after TX and boy did that help with the painful Trismus exercises and keeping my mouth stretched. I had zero problems quitting with not even one sleepless night (unlike the patches where I did need to reduce dosage as cold turkey caused too much insomnia).
This second time around, it is now six months past surgery and I am down to one percocet a night before bed as that is when my jaw and neck ache so bad. I am guessing you did not go to a CCC where they understand how pain delays recovery. In fairness to your ENT, he may be just DEA shy instead of clueless. Bottom line is you should not have "to endure pain" .

I quit all my pain meds about my 2 week post Tx as they were contributing to my nausea, at least I thought so, and even though I still had pain issues my nausea did ease up which allowed me to get the required calories and hydration to recover.

I'm 2 weeks post-Tx and still taking my Percocet, Jim, about every four hours, like you. I couldn't do without it -- I'm still in plenty of pain to merit taking it! Don't worry about getting hooked at this point; no need to endure pain when you don't have to (that's what everybody tells me, anyway!). And you'll heal faster, too.

If you were taking it a month or more down the road, it might be a different story. For now, I wouldn't worry.

My doctors were very generous with percoset. My ENT said that if it helps you eat better, it helps you heal faster, and that at the end of the healing process nobody gets bonus points for enduring pain. So go to the doctor who gives you prescriptions without judging you too much, and just use that percoset when you need it.

I was using it regularly for about a month and a half after the end of treatment, and I don't think it impaired me in any way. It helped me sleep, it helped me eat, and I believe it ultimately helped me heal.

I am still taking it but only 1 time a whole one. I cut mine in half and take it at the most twice a day and one of those is at bedtime. I like to control my body and not it me. But I don't really think it would be much of a hookable drug to half of us. If I forget the half perc at bedtime, I am awake in about 2 hrs and then take it. It does aid in getting some sleep. Ambien had me doing things I never did remember.

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

nicely said eric xx

Eric,

So sorry for your pain and drug issues but I did see that 5 Hour stuff at Walgreens the other day sold in a 6 pack for about a dollar each. Not sure if that's a good deal but W is usually about the lowest you can find. FYI

thanks for the heads up David, that is a good deal

jim,eric, hi its meanne here i had a partial glosectomy and neck dissection 7 days ago my diagnosis came at the exact time my inpatient and outpatient treatment for addiction to opiods was complete. i had enjoyed life for 130 days drugs free and then this scca came up like a kick in the ass. what to do? i knew i would have to start taking pain meds (opiods specifically) again. but how not to get hooked this time around. addiction is a very real disease and is nothing to be afraid of talking about with your medical teams about, becaue they will not bring it up. i am also a registered nurse and knew i was getting addicted when i was because i could not live without the pain meds vicodin,percocet specifically. i also loved the way they made me feel. when all of your waking hours (and sometimes your dreams too)are filled with thoughts of getting and having an ample supply are foremost in your mind you are probably already addicted. during your treatment is no time to start on a program. you must be at a place in your life that you can be completley free of any mind altering substances-this includes alchol. recovery is possible at the right time. iam just grateful that i have a very strong support group a faantastic sponsor and a husband wlling to give me my meds and not let me choose when to take them. i plan on beating this cancer and still have a strong recovery with my fellowshp in narcotics anonymous stronger than ever. i am not judging or diagnosing any one here just sharng my observations with my new family here at OCF

This is interesting to me and I hope someone see's this b/c this thread is a bit old.

I had my last partial glossectomy in February of 2009. I stopped the vicodin/percocet about 2 weeks after my surgery and that was not a problem. I had to stop b/c I went back to work. I still had an insane amount of pain so my family doc gave me Tramadol. It was like a miracle drug. It took away the pain and made me feel happy and much more patient. I've had some restless leg problems and noticed when I took the Tramadol the leg problems went away. I decided to stop taking it when my mouth pain subsided but my legs drove me CRAZY. I could not sit still and couldn't sleep. I did some reading up on the side effects and withdrawal symptoms and did not find restless leg. I went to the doc to ask about it and they said people actually Tramadol for restless leg so they saw no problem this. The pharmasist said the same thing so I guess I should feel ok.

Has anyone else taken Tramadol?

Suzanne: I'm caregiver to my elderly mother who has Alzheimer's and chronic lower back pain. For awhile, the doctors prescribed Tramadol for her pain. I found some worrisome information about Tramadol on the web and, eventually, we stopped giving this to my mother. [She's now getting Vicodin and Fentanyl.] I suggest you search the web generally for Tramadol to find out more information. Good luck! Rob

I take Tramadol for my neck and shoulder injury which i am waiting surgery on.I may take it for a week or so and then not at all for days.I have had no problems with withdrawal symptoms,but i do get a little light headed and nauseous sometimes.It is a narcotic i believe,but shouldn't cause the same sort of problems as codeine or morphine ect.If you read the literarue that comes with the drug,it really is quite frightening,but then so is the literature associated with most nedication.i think its a case if you believe your symptoms are allied to Tramadol,then stop it and ask for an alternative.

Thank you both for your insight. I agree Liz, when you read that literature that comes with the medication it is scary. I wish my doc never gave it to me b/c I feel like I need it now and that scares me. On the other hand the pharmasist told me she takes it for restless leg and I only take 50mg once a day. She said it's such a small amount, not to worry. Also, I talked to 2 family docs at my practice and they both know how much I'm taking and for what and are both fine with it. I think I'm trying to make myself feel better but I know I would rather not take it at all.

And to further complicate things...I'm hoping to get pregnant in the near future and I obviously can't take it then. I don't know what I will do. Anyone who has restless leg knows how terrible it is. It is SO uncomfortable....

Rob....I know they say it is narcotic like but is not actually a narcotic...I think anyway.

Thanks again