For the first time since diagnosis nearly 4 years ago I am having significant problems with pain management from the cancer itself, rather than all those pesky side effects of treatment.
For the past few weeks I have been trying to manage with OxyContin, Endone and panadol. We are still trying to get the mix right and I have an appointment in a week or so.
But regardless of what I take (example in a 24 hour period would be 2 x slow release 10mg OxyContin, 2 does of panadol, and 2 Endone) I am never pain free.
So my question is, are we aiming for manageable pain (eg being able to do things but with a constant grimace) or pain free? I am concerned that to get to the pain free stage I will be so doped up that I'll be useless, but at the same time I can't cope with the unrelenting ness of the pain.
Thoughts and experiences?
Sun, 01/06/2013 - 19:53
You're right to ask this question. Opioid pain medications can have some significant side effects that range from constipation to hallucinations, delirium, etc., and it's common to need to balance the benefits in pain control against the very real side effects. We often don't strive for complete pain control, especially if that leads to much greater side effects from the treatment, but rather a goal of getting the pain control into a "manageable" level; what is often suggested is to try to get the pain down to about a 3/10 level or lower, so that it might still be present at a low level but not disruptive to the person's life, while balancing that against the side effects of the pain regimen. That tends to be a point of diminishing returns on escalating pain control.
Mon, 01/07/2013 - 01:16
So sorry to hear this. Where is your pain? And this is all new, since stopping the trial?
I generally always have pain, although I know I'm progressing when there's a sudden increase and, as you describe, it's unrelenting (like now). I haven't tried anything stronger than Vicodin, but find I have breakthrough after about two hours. Would something completely different, like Cymbalta, be an option? I hear that helps some people. Or something with more anti-inflammatory properties in combination with opioids? Just throwing out ideas.
I hope you find the right combo soon and get some relief. Please keep us posted. Happy New Year and best of luck.
Mon, 01/07/2013 - 11:52
Hi Gail. I hope you find just the right coctail. I'm so sorry you're in pain.
Mon, 01/07/2013 - 16:20
Dr West - thank you for your response. It was extremely helpful and allows me to keep my expectations realistic!
Jazz - pain is apparently caused by thickening of the lung lining. This is part of the progression that has pushed me off the trial. Thanks for your ideas re alternatives and I will follow p. I'm curious though - if you are in constant pain why aren't you taking stronger medication? I find pain to be so disabling, as I'm sure you. Is there a reason you are staying away from the stronger stuff?
Debra - thanks for your thoughts. Like everyone on this site, I am just so grateful that there are people to reach out to, and that they respond.
Mon, 01/07/2013 - 18:28
Hi Gail - -
I too am so sorry to hear about all the pain you are having. I recall my Mom's thoracic surgeon mentioning once that the lining of the lung (i.e., pleura) has a lot of nerve endings - - and therefore can be super sensitive. Anyway, I hope they find something for you that works. I can only imagine how horrible it must be for you. . .
Take care my friend,
Mon, 01/07/2013 - 18:52
I've not experienced pleural pain yet, I don't think. However, I recall Myriam's sister's pain, and I got home at 4am from the ER with my father. He suddenly developed acute pain in his right chest last night, something like 11 on the 1-10 pain scale. Turns out he now has a pleural effusion disturbing his pleura... along with the tumor pressing on blood vessels etc. So I can now imagine the use of opioid pain meds. (I think the strongest thing he's ever used was Meloxicam.)
Pain has been keeping me from being as productive as I could be, and I've just not managed it properly. But I'm going to be more proactive. I haven't had good luck with pain meds in the past (Fentanyl patch made me so nauseously ill), and the ones that have been effective seem to be discontinued in this country (Tylenol #3 and darvocet?). I've not tried oxycontin or the others you mention. I'll ask at my next appointment and see if I discover anything new.
Mon, 01/07/2013 - 21:11
Laya - thanks for your comment about the lining being supersensitive, it gives me some reassurance that I am not just being a wimp. And can I also say, amongst a website of fantastically caring people, you excel! Your contribution, particularly in such difficult times as the last couple of weeks have been for you, are truly extraordinary! I salute you.
Jazz - certainly worth checking out some alternatives. OxyContin and Endone seem to be fairly common, and dose can be juggled to find the right level for you. I suspect that like many of us you avoid the stronger drugs for a couple of reasons. Partly we want to convince ourselves that we are still in control, and also in fear that taking the drugs now would lessen their effectiveness when we really need them. The doctors on Grace have educated me somewhat, and I reckon taking the drugs to control our pain does mean we are in control! And they will still work further down the track.
Mon, 01/07/2013 - 21:52
Oh Gail. . .if only you knew how much support I get from all of you here. Actually, as a fellow GRACER, I know that you know. I lost my Mom to this f&!&%&g disease. Life will NEVER be the same again. But, I don't want it taking another person without a fight. And, if this means helping people get educated about their disease so that they can know their options and/or communicate more effectively with their treaters - - or simply to provide moral support/moral adrenaline shots to my fellow GRACERS - - then so be it! I am personally vested in all of you (as I was in my Mom) - - and will try to stick around as much as possible for as long as possible. . .Surprisingly, in my gutted, obliterated, heartbroken state, my "flight instinct" has all but disappeared. I'm all about the "fight instinct" right now. . .
Mon, 01/07/2013 - 23:11
I'm so sorry you have constant pain. My Herbie never experienced pain even from his pleural effusion. I'm no expert but do know when you find a drug/drugs that controls the pain and when the pain is worse keep the drug in your system (don't wait for pain to return to take more). If you have to limit the amount of drug then save some to take before bed time so you can get some sound sleep. I realize you may already be doing this.
Tue, 01/08/2013 - 00:42
Thanks Anne. I am slowly learning not to wait for the pain to get bad, but to dose up in anticipation. But it doesn't come naturally!
Sat, 01/12/2013 - 16:29
Increased slow release OxyContin from 10mg to 20, twice a day. Seems to have do e the trick. Have Endone for break through pain but find I can manage it with a very occasional panadol.
Had first round of carbo/alimta last Thursday. So this is day 4/5. Feeling good!
Sat, 01/12/2013 - 18:18
Great! I hope the chemo goes well for you.
Sat, 01/12/2013 - 21:00
YAYYYYY! Fingers, toes and everything else remains crossed for you. . .