Anyone with severe chronic pain / cancer pain input requested!

I have the worst pain ever. My life is hell. It's difficult to manage my pain and not sleeping makes everything much worse.


I'm on fentanyl patch 50 mcg and oxycodone 5mg about 15-20 a day and on the worst days 25-30 a day. Rarely I will take even more up to 35 in 24 hours. I take 2-4 to manage medium pain every 4 hours. When it's hell like no sleep, I take 4-6 at a time and wait 30-60 minutes. If its still bad I take more until the pain stops or I sleep. If I can't sleep and I can't manage it by noon then I usually go to the ER. I didn't need to go recently because usually I can manage it. Past couple weeks every week there are 2-3 days I can't sleep. So now I need to find the most efficient way to manage so I can get on with my life.

I'm going to ask my doctor to double the patch to 100 so I don't take so many pills. Also want to try fentanyl lollipop because 2 to 3 nights a month the pain is horrendous and no matter how many pills I take I can't control it. Moreover when in serious pain I hate waiting nearly an hour for the pills to work. On these nights I need a medication to just knock out the pain so I can sleep! I've done research and am thinking the fastest way would be the lolli or maybe liquid morphine? I never tried these.

Anyone with experience with these meds I would really be grateful for any advice.

Post Edited (Gingerton) : 1/1/2013 11:47:52 PM (GMT-7)

I can related a lot to your post. My only serious question, are you actually legally prescribed to take that many pills per day?

I have been dealing with advanced prostate cancer for over 4 years now. I have been diagnosed with severe "cancer pain" realted to the cancer and the treatments I have underwent. I had both failed surgeries, and a disasterous attempt at radiation, which destroyed my bladder, and bladder neck, and left me with a urostomy (stoma). The pain is deep in both hips, my entire pelvic bed, tops of both legs, and across all my lower back. Most of it is severe nerve damage which is considered perm. in nature.

Right now, I am on Fentanyl patches, 75 mgm, we had to change from every 72 hours to every 48 hours, which helped some. I use (6) Loratab 10/500 pills per day to help fight the pain. There is little time awake that I still not suffer from pain to some degree or the other. As for sleep, an endless problem, probably average 4-5 hours of broken sleep plus nightmares most nights. Have to supplement my sleep with 1-2 naps per day. I was declared disabled to work over 1 1/2 years ago by Social Security.

My oncologist is my PM, and he works closley with me. He is willing to adjust my meds as needed, but realizes, that as my cancer continues to progress (its no longer curable), he will need to have pain fighting tools to work with me with.

I wish you the best, are you seeing a good oncologist, and can you tell us a little more about your cancer situation. How often are you switching the Fentanyl? 48 hour switch is much more effective for me than the standard 72 hours.

david in sc

Hi thanks for your reply. Yes my patch is 48 hours. The patch literally doesn't work after 60 hours. The labels say the patch release certain mcg per hour over 72 hours but that is absolute rubbish and I complained to mylan about that. I only have ever had mylan. The patches start working 2-6 hours after you put them on and most the medication is released with the first 24 hours. Have u ever noticed that if the 50mcg patch has 5.1mg of fentanyl but 50x72 is equal to 3.6mg! That means that a 50 patch if evened out would at it's maximum release 70.83mcg per hour! So why the hell is there 1500mcg extra in the patch! ***?

But over 48 hours it works awesome and I love the mylan since they convenient and they send the transparent tape so when I toss and turn at night the patch doesn't come off. I never tried any other brand since I read the gel reservoir patches can rupture and is dangerous and mylan is the best technology. Without the patch I would always wake up in pain 5 hours after sleep.

Thanks for your follow-up explanations, wasn't trying to judge you, just trying to fill in your story. My doctor tried me on oxycodene for a short run, might as well given me sugar pills, did nothing for me. Tried me on dilaudid. In IV form, I think its the greatest pain killer of all time, but didnt translate that way in pill form for me. I have been on Loratabs steady since July of 2010, when my chronic cancer related pain started hitting me hard. My oncologist agrees, to stay with what works best with me for now, and the combo of Fentanyl and Loratab is a pretty good compromise.

On the plus side, I have never been constipated from all the Loratabs, not even once, which amazes my doctor. With the fentany, I tried the "resovoir" type only once, didn't like it, and agree with you, there have been some serioius safety issues with that type. I only use the mylan type myself. I never have any trouble with the patches staying on. I put my patch on the front side of my upper arm, just below my shoulder. I switch arms every other time.

When I switched from 50 to 75, the very first patch really jolted my systems, and labored my breathing a bit. Scared me and I asked my dr, he said it was a normal reaction to the higher dose. He was right, and after the first patch, I adjusted to it fine. I have been on 75's for about a year now I think 100 would work better, but he wants to reserve that strength for later on.

As far as how effective my combo is, what I usually say, ,is that my meds take care of 90% of the pain 90% of the time. I still have bad moments and bad times despite the meds, and i have learned to live with and tolerate a certain amount of pain, I believe it comes with cancer, to be honest. This prostate cancer is my 4th time in 13 years dealing with a very dangerous cancer situation, so I am no stranger to it.

I don't want to feel doped up, I like have the full facilty of my mind, that is a very important QOL thing with me, so I am willing to trade off "x" amount of pain, in order to have a clear head. For all my pain to be eliminated, I am convinced I would have to be drugged up much more than I am.

At some point, metastisis will be starting to show up in my bones and/or organs, and there will be even more pain to deal with, so I can use up all my "ammo" right now, got to plan for worsening conditions ahead. I have mentioned this attitude a bunch here at CP, that sometimes its all about a trade off. Each person has to make those QOL choices for him/her self, no two people are alike.

I have not had a single pain free day/night since July of 2010, so I can't imagine or close my eyes and try to remember what that would feel like, its too far into my past.

But I would like to suggest to you, and I take my own advice here, is to never give up hope, not even on the most painful and darkest of days that you experience. There is always hope, as long as you are still alive and fighting. While my cancer is no longer curable, who knows what might pop on the drug market in the next few months or years that could reverese my condition. All things are possible, so why give up in advance?

For now, I live one day at the time. I try to enjoy the things I always liked to do (though with much more physical limitations of course), and I still have my wife, children, and grandchildren - all of whom count on me in various ways.

I am not afraid to die, we all have to one day, so I rarely think about the morbid part of my situation. I could just as easily wake up tommorow and die of a heart attack or stroke, and beat the cancer to the punch. So I don't obsess on the cancer part.

I wish you all the best, and the good thing about you come here to HW CP, is that this a true family of caring people, whom can all relate one way or the other to what and how you are suffering. Not too many of us here dealing with cancer pain specific, but pain is pain, regardless of the cause.

You can always vent here, no one will mind, we all do it time to time. It helps. And you are preaching to the choir here, and your pain issues will be understood by those that suffer along with you.

David in SC

Hey David I know exactly what you mean when you say you forgot how it is to be pain free. I remember before this whole ordeal I would read about people committing suicide and wonder what could be so bad to require such drastic measures. But now I get it. Some people literally make a logical choice. There was an article about a 19 year old who committed suicide to to uncontrolled pain and it made me so sad cause I knew what hell he must have went through.

As for the patch increase breathing problems I think everyone should start at 12mcg no matter what. I was started at 25 and I remember the first 2 days I was almost pain free! Back then I took sleep meds but didn't need them the first 2 days after the patch. It was awesome to be pain free. The third day was hell so i went to the er and took breakthru. But by the end of the month I had that waking up grasping episode so it scared me crapless. It's takes at least a month for the body to adjust to the fentanyl.

I wish you the best David and appreciate the never give up words u stated because I agree suicide is never the answer. If you might do something stupid dont wait go to the er. At least you made it to 60 and hopefully lived a fulfilling life.

As to the other question yes I have tried ambien it doesn't work and one time a sleep walked so my parents took me to the er. They thought I was overdosing but back the I was only on Norco and never took more than 12 a day. I don't even remember going to the er I just woke up there with an iv in my arm and of course they drug tested me and saw Norco level was not unreasonably high to overdose. I never had Xanax but have had Ativan and it doesn't help with sleep cause I'm not axixous. It's pain that keeps me up

Thanks for everyone help if anyone else has input I would really appreciate it.

My doctor started me at 12.5 mgm of fentanyl, to get my body use to it, and it was only because I was considered "opiate tolerent" for two years prior. Fentanyl is a very dangerous drug, even though it can work so well for many patients. I am very careful with my patches, putting them on and disposing of them, making sure the old one is off and disposed of before putting on the new one. Also, per my doc, I am not allowed to use our spa, or even to take hot tub baths, because heat can make the body absorb the drug too quickly, and people have overdosed and died from that.

As far as Ambien, I was put on it in 2000, and have been on it ever since, almost 13 years now. While it doesn't keep me asleep as well as it did years ago, it still has the power to knock me out within 15 minutes of taking it. It's the only way I can get to sleep on my own at night, so its another one of those medical trade offs one has to make for their QOL issues. My docs feel I need the sleep far more, than worrying about being addicted to the Ambien. Now that ambien is a generic and cheap, I don't feel guilty for still being on it.

Hoping you feel a bit more encourage by all the threads you have received so far. I began having cancer trouble at age 40, so I have been dealing with various deadly cancers for nearly 20 years, and all I can say, is I am still here annoying people and being a pain in the a**, lol.

david

Gingerton, I guess if you figure out my Oxy doseage I could take 24-5 mg pills per day and I consider my dose fairly low. I use a liquid Oxy now so it absorbs quicker and better. I had gastric bypass so my absortion is compromised.

Fentora may be an option your dr may consider. That is a buccal tab (disoveable). This is fentynl and is very quick acting. It is prescribed for CA pain. My last insurance company would pay for it but not the new company. This med was very helpfull to me.