Worried about pain medication withdrawl

Barbaraek
Barbaraek Member Posts: 626
in Head and Neck Cancer #1

In order to manage the severe pain my husband experienced from the side effects of chemoradiation, and then a bout of "radiation recall" concurrent with adjuvant chemo in Spetember, the pain team doctors prescribed a high dose of methadone to replace fentanyl (150mcg) patches and oxycodone for breakthrough pain. Initially the methadone was accompanied by Dilaudid for breakthrough pain. Within a few days, we were able to stop using the Dilaudid since the methadone was effective in managing the pain. Now that treatment is over and we are on the road to recovery, it's time to wean off the methadone. Easier said than done I guess. 

The first recommendation was to cut the dose in half for a week, then in half again the following week, then consult with the pain team again for the final instructions for weaning off. Didn't happen. The initial week of cutting in half (20 ml. 3x a day to 10 ml. 3x a day) brought back too much pain - especially since my husband was working on trying to swallow again to reduce dependency on his PEG tube for nutrition and try to take more orally. So we tried 3/4 dose (15 ml. 3x a day) for a week and were more successful with that. This week we set out to reduce the 3/4 dose by another 1/4 (15 ml. to 10 ml 3x a day) and so far my husband is experiencing fatigue, nausea, stomach cramping, throat pain, even more dryness in the throat, and doesn't want to take in very much orally. We'll put a call in to the pain docs again today to see what they recommend. Through all of this - and most of his treatment actually, he has been doing administrative work 5-6 hours a day, and answering emails in the evenings. Keeping the pain at a manageable level has enabled him to function and progress with some swallowing.

I am wondering how others have managed coming off of heavy duty pain management. Pain is a very personal and individual issue - what is intolerable to one may be bearable to another. My husband is already discouraged because he feels he "should" be progressing better/faster now that the PET scan results were clear. I try to remind him that it is a long, long road but he is frustrated. I know that he needs to give himself adequate time to recover from all he has been through, but he's feeling pretty frustrated and angry with his body not responding better. Success stories, suggestions and empathy are what I am in need of - understanding the challenges of weaning off pain meds, expected problems and knowing what to expect will be helpful to us.

Thanks...

Barbara

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2
    The Tortoise and the Hare

    Hi Barb,

    Your husband is at the stage all of us have experienced. Our minds are racing like the Hare, but our bodies are responding like the Tortoise. Slow and steady actually gets us to where we want to be.

    As you mentioned, each person reacts to recovery as we do to treatments, no one size fits all here. If it takes him a bit longer than he thinks, that is his body letting him know that he still needs to recover some more before getting into the full swing of things. He will get there, pushing too hard only causes us to fall back more steps than the normal one step forward/ two back routine.

    He needs to measure his recovery in weeks, not days. We can have fatigue issues for up to and sometimes over a year after treatments according to my Radiation Oncologist.

    My Best to Both of You and Everyone Here

  • BarryChen1010
    BarryChen1010 Member Posts: 27
    #3
    I am sorry that your husband

    I am sorry that your husband still suffers pains after a few month of treatment. Like you said everyone is different and I have less experience, but it's only two months after Sept when chemo was finished, so it may just need take time. Keep patient and I hope his pain will go soon.

  • hwt
    hwt Member Posts: 2,328 Member
    #4
    BarryChen1010 said:

    I am sorry that your husband

    I am sorry that your husband still suffers pains after a few month of treatment. Like you said everyone is different and I have less experience, but it's only two months after Sept when chemo was finished, so it may just need take time. Keep patient and I hope his pain will go soon.

    Just my opinion

    Don't let the pain get ahead of him. 

  • lifeisDHA
    lifeisDHA Member Posts: 64
    #5
    my boyfriend was on heavy dose of pain med.

    I remember he was very upset and exhausted while he was on the med, though he did cut down the dose little by litte. One day he did some research online and figured he had most of symptoms of drug addtict, then he made decision to cut off the med. It was very difficult 1 or 2 weeks but he made it. He felt much better afterwards.

  • wmc
    wmc Member Posts: 1,804
    #6
    "The Pain" everyone is different.

    Don't let the pain get ahead of him. Playing catchup is no good as he knows. Don't let his profession influence his dissision. My son was in a bad, really bad wreck and we almost lost him twice. 5 breaks in the back and the iliac crest was broken and never fixed. Said it would be ok and do worse if they tried to fix it with pins. He has been on fentanyl for eight years and will most likely never get off it. He has Norco 10/325 [one to two] as breakthrough, and I can still see the pain he is living with everyday. He holde off on the norco untill he has to take it and he has the strongest tolerance for pain I have ever seen someone have. He can take more than I ever could. 

    The prosess to cut down or cut back will take some time. I know the body will get used to pain or conditions. When my lungs collapsed it was about nine days for me to beable to cut back on the meds as I was getting used to having the tube in my chest. Then we found out I was allergic to Demoral after being on it every four hours for nine days. I had been able to streach it to six hours so my body was getting used to the pain. Now with my neck, I have bone spirs and not the laryngectomee and will be on Norco the rest of my life. I do wish him the best and will always keep you both in my prayers.

    Bill

  • MrsBD
    MrsBD Member Posts: 617 Member
    #7
    Withdrawal

    Hailing from Wisconsin, the land of Brett Farve and his narcotic addiction a few years back, I was worried about getting hooked on opiates. My oncologist said if used properly, withdrawal should not be an issue. I used two 25 mg Fentanyl patches and several doses of hydrocodone every day for about four months (two months during treatment and two after). Stopping was no problem. We reduced the Fentanyl to 25 mg and kept the Hydro the same. Twice, I found my patch in my sleeve and did not notice worsening of pain, so the doctor said it was okay to stop at that point. I slowly reduced the amount of liquid hydro until it wasn't needed anymore. Once in a while, I still get a minor sore throat, but don't need to take anything. You just have to learn what is irritating. Fresh pineapple tasted great, but I paid for it for three days! Wishing you and your husband the best,

    Beth

  • kdot2003
    kdot2003 Member Posts: 143
    #8
    Hi, I see that your husband

    Hi, I see that your husband is so tired of being sick, feeling sick, and wants to be DONE and WELL.  I imagine I will feel like that one day too.  My mom quit cigarettes by the Nicotine Patch Method, only she did it like a turtle.  Instead of stepping down every 1-2 weeks she about doubled the process and quit smoking after over 50 years with few withdrawal effects and little frustration.  Does your husband want to wean kindly and gently or continue to have breakthrough pain and all those nasty side effects.  I would have a talk with the pain doc and just draw out the taper schedule just enough to avoid all that unpleasantness.  I'm so sorry its that hard.  I worry about getting addicted to my Ativan and to pain meds whenever I start them.  Just a thought.   HUGGGGS   Karen

  • Barbaraek
    Barbaraek Member Posts: 626
    #9
    Weaning off of pain meds UPDATE

    So we consulted with the pain team and they adjusted the weaning off schedule to be more gradual. They didn't want pain to interfere with the progress he was making swallowing or his ability to function at his administrative work. I'm not concerned that he will be addicted- he says he feels no euphoria from it...just reduces the pain. And he is motivated to not be dependent on it. Thanks for everyone's input.

    Barbara

  • wmc
    wmc Member Posts: 1,804
    #10
    Barbaraek said:

    Weaning off of pain meds UPDATE

    So we consulted with the pain team and they adjusted the weaning off schedule to be more gradual. They didn't want pain to interfere with the progress he was making swallowing or his ability to function at his administrative work. I'm not concerned that he will be addicted- he says he feels no euphoria from it...just reduces the pain. And he is motivated to not be dependent on it. Thanks for everyone's input.

    Barbara

    It's great the doctors are also on top of this.

    Thanks for the up date. It sounds like his doctors are ontop of this and he will do just fine. No concerns about any addiction, as they give just enought to cut or dull the pain and never really remove it completely. Just enought you can live [tollerate] it. Still in our thoughts and prayers.

    Bill

  • Kenny-
    Kenny- Member Posts: 99 Member
    #11
    Thanks for sharing Barbaraek

    Thanks for sharing Barbaraek! If it comes down to it, at least I can appreciate the options and scenarios that you went through in the decision. 

  • avisemi
    avisemi Member Posts: 172
    #12
    We went through the same.

    We went through the same.  Slow decreases worked for us.  It took a while for Dima to feel what he considered better. Though for me it was obvious how much he was improving.  When he got frustrated because he was not realizibg his recovery or it was not fast enough, it helped him to be reminded of where he came from.  I would go over the list of changes. E.g. Last week you could only swallow a couple of spoons; this week you ate the bowl of oatmeal.  Specific things like this would make him realize there was progress. 

  • wmc
    wmc Member Posts: 1,804
    #13
    avisemi said:

    We went through the same.

    We went through the same.  Slow decreases worked for us.  It took a while for Dima to feel what he considered better. Though for me it was obvious how much he was improving.  When he got frustrated because he was not realizibg his recovery or it was not fast enough, it helped him to be reminded of where he came from.  I would go over the list of changes. E.g. Last week you could only swallow a couple of spoons; this week you ate the bowl of oatmeal.  Specific things like this would make him realize there was progress. 

    Avisemi you did good.........

    You did good in reminding him he was improving. Sometimes as the patient we don't see the improvment liks someone else does. It is good to reming us.

    Bill

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