Pain management - any experience with methadone?

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

Hi all,

We are still in the hospital trying to manage pain, hydration and nutrition. Most of the nausea has decreased and my husband is tolerating a clear Boost (Breeze). The main problem is the acute mucositis brought on by the adjuvant chemo regimen of Cisplatun and 5FU. It has also triggered something called "radiation recall" where the mucositis from the radiation kicks in too. While inpatient they are treating the pain with 150 Fentanyl and a PCA with dilaudid.

As noted before, my husband seems to be on the far end of the bell curve in terms  of side effects, reactions etc. This time, even with Neulasta, he is hovering close to neutropenia. His white blood cell count went from a whopping 25 to 2 in one day. He is not getting adequate rest because of pain. He is on IV antibiotics, potassium, and a few other things.

Today the pain team was in and they are recommending coming off the fentanyl patch/oxycodone and going on methadone 30 mgs 3x a day with dilaudid for breakthrough pain. Did anyone else use these for pain? For now he remains in the hospital so they can manage the pain.

Would appreciate your thoughts and comments. My husband would like to continue working as his energy allows, but his job involves making decisions and clear thinking. Being able to work, even if it's just for 2-4 hours a day has been a Godsend because it's given him a purpose for his day and kept him from thinking about his illness constantly. He is concerned about how fuzzy the methadone might make his thinking.

 

Barb

Comments

  • stephenaudrey
    stephenaudrey Member Posts: 32
    #2
    I was on liquid methodone

    I was on liquid methodone twice a day earlier this year for pain from radiaton therapy.  I don't know how much of a difference it made because I still had terrible syptoms.  It didn't seem to make me unable to focus or concentrate.  It didn't seem to do anything to  me mentally.

  • Barbaraek
    Barbaraek Member Posts: 626
    #3
    UPDATE

    How many words are there to describe pain? Searing, stabbing, burning, intermittant, tearing, constant, tingling, hot - that F ***** list must be a mile long.

    After a consult with the pain team, we are switching to a dose of methadone to handle the baseline pain and using a PCA (patient controlled analgesic) pump with a bolus dose to handle acute pain that occurs until the mucositis resolves and side effects diminish. 

    We will no longer be using fentanyl or oxycodone.

    Barbara

  • wmc
    wmc Member Posts: 1,804
    #4
    Pain

    http://www.vaughns-1-pagers.com/medicine/painkiller-comparison.htm

    This is a chart for Pain Comparison. He is already on stronger stuff than morphine. I have seen someone on 75 fentanyl and Norco 10/325 work everyday on that. Now 150 fentanyl he could not even feel his arm, then you add Dilaudid  or Oxycodone, now you add methadone which is like morophine, he most likely should not be at work. I also hope he does not drive or work with any machinery. If he is on that much pain meds his doctor should have him out on disability, and let him just concentrate on this fight with cancer. Just my opinion, and I am no doctor. I have seen my son on fentanyl and hydro and work, but never with Dilaudid. To much of a rollercoaster ride. I do understand his desire to work, as it lets him consintrate on outher things and why it makes him feel better. On that much pain, no, he should not be working as he really can't think as fast or fully on task.  Very sorry to hear he is in that much pain, and soon it will ease up some.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    i'm praying for your hubby to

    i'm praying for your hubby to recover soon.

    God bless,

    dj

  • Barbaraek
    Barbaraek Member Posts: 626
    #6
    UPDATE

    So we were finally able to come home yesterday!! The white blood cell counts which had dropped to .38 even with the Neulasta, finally started trending up again, and we could continue on antibiotics at home. Baseline pain levels are down to a "3" with the methadone, and he has a PCA pump that delivers a single dose of Dilaudid when the pain suddenly shoots up to "10+"  - which is usually when he wakes up from sleeping and has to clear the mucous which has built up. He describes it as feeling like the palate has adhered to the back of his throat and is pulling and tearing away, like a big scab being ripped off whenever that happens. I shudder when I think about it. There are 100 doses in the pump...in 24 hours he's used 11, so hopefully we won't need the pump too long. The doctors' best guess is that the side effects from this round of Cisplatin and 5 FU will abate over the next 3 weeks, and we can start titrating off the methadone slowly. We are now no longer using fetanyl and oxycodone for pain control. So far the side effects from the methadone have been sleepiness and some lethargy, but thankfully no upset stomach. They also had him on a single dose of Nortriptyline at bedtime, but we were advised to stop that because he was developing tremors/shaking and a rapid heart rate. He was only on that for 2-3 days, so we were able to stop it quickly, rather than having to wean off. Lucky for him, I am an excellent chauffeur having driven to countless music lessons, soccer practices and other activities, since there is no driving allowed for the time being. As far as work goes, he can do work from home, call into meeting and do some administrative tasks. Time will tell if a year from now he will be able to go back to being a surgeon...maybe not...in which case I'm thankful he took the two years of classes to get an MBA on top of his MD. He has options, and options are always good!

     

    As I posted before we are done with the adjuvant chemo involving Cisplatin and 5FU. The risk benefit ratio didn't make sense to us. At best it offered us a 2-6% chance of reducing recurrence. I am feeling RELIEF and BELIEF...relief that we don't have to do this again in 2 weeks, and belief that we eliminated the tumor with the 6 weeks of radiation (35 treatments) 2 concurrent Cisplatin chemotherapies and 1 adjuvant with Cisplatin and 5FU. Our scans aren't scheduled until the middle of October, but I am focusing all my postive energy on moving forward and getting him back to feeling better, building back strength, and working on swallowing.

     

    Thank you all for your tremendous support here on this board. So many of our friends and family are caring and loving, but they don't always "get it" like y'all do here.

     

    Barbara

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    Barbaraek said:

    UPDATE

    So we were finally able to come home yesterday!! The white blood cell counts which had dropped to .38 even with the Neulasta, finally started trending up again, and we could continue on antibiotics at home. Baseline pain levels are down to a "3" with the methadone, and he has a PCA pump that delivers a single dose of Dilaudid when the pain suddenly shoots up to "10+"  - which is usually when he wakes up from sleeping and has to clear the mucous which has built up. He describes it as feeling like the palate has adhered to the back of his throat and is pulling and tearing away, like a big scab being ripped off whenever that happens. I shudder when I think about it. There are 100 doses in the pump...in 24 hours he's used 11, so hopefully we won't need the pump too long. The doctors' best guess is that the side effects from this round of Cisplatin and 5 FU will abate over the next 3 weeks, and we can start titrating off the methadone slowly. We are now no longer using fetanyl and oxycodone for pain control. So far the side effects from the methadone have been sleepiness and some lethargy, but thankfully no upset stomach. They also had him on a single dose of Nortriptyline at bedtime, but we were advised to stop that because he was developing tremors/shaking and a rapid heart rate. He was only on that for 2-3 days, so we were able to stop it quickly, rather than having to wean off. Lucky for him, I am an excellent chauffeur having driven to countless music lessons, soccer practices and other activities, since there is no driving allowed for the time being. As far as work goes, he can do work from home, call into meeting and do some administrative tasks. Time will tell if a year from now he will be able to go back to being a surgeon...maybe not...in which case I'm thankful he took the two years of classes to get an MBA on top of his MD. He has options, and options are always good!

     

    As I posted before we are done with the adjuvant chemo involving Cisplatin and 5FU. The risk benefit ratio didn't make sense to us. At best it offered us a 2-6% chance of reducing recurrence. I am feeling RELIEF and BELIEF...relief that we don't have to do this again in 2 weeks, and belief that we eliminated the tumor with the 6 weeks of radiation (35 treatments) 2 concurrent Cisplatin chemotherapies and 1 adjuvant with Cisplatin and 5FU. Our scans aren't scheduled until the middle of October, but I am focusing all my postive energy on moving forward and getting him back to feeling better, building back strength, and working on swallowing.

     

    Thank you all for your tremendous support here on this board. So many of our friends and family are caring and loving, but they don't always "get it" like y'all do here.

     

    Barbara

    whew, i know you guys are

    whew, i know you guys are tired.  there's no place like home to begin to feel better.  bet you didn't know that doing all that driving for the kids would have extra benefits..........lol.  you have the right attitude, concentrate on the positive!!  take it one day and a time and don't expect healing to come quickly, it takes time.  as he recovers, it is crucial that he continue to swallow, even though it hurts like hell.  if he doesn't swallow, he could very well lose that ability and that would be awful.  it is a shame what all the poison that is meant to cure us does to our bodies.  i'm so sorry he is in so much pain.  i never realized how tender the mouth is and how much pain it can cause you to be in until i had the cancer.  there were days, i cried b/c the pain was so severe and nothing would help it.  i pray he feels better soon and the pain will lessen and go away.  i do believe he will start healing a little faster now that he is home.  there's no place like home, especially when you're sick.  so, you both hang in there and continue to be positive.  we are all here for you any time you need us.

    God bless and be with you both!

    dj

  • MrsBD
    MrsBD Member Posts: 617 Member
    #8
    Glad you are home

    It's good to hear your husband is home, the pain is under control, and the healing phase has begun. Recovery is a frustratingly slow process. Just be patient and hopefully your husband will be back to helping others heal soon. You have my sympathies with all the driving! I was just feeling better when my hubby had a bone infection that prevented him from driving for two months. All the years running the "mom taxi" paid off!

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #9
     

     

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