Still on pain meds

arndog64
arndog64 Member Posts: 537
in Head and Neck Cancer #1

First my husbands goes for his ENT scope next week. No scans!!! His doctor has not done anyt type of scans on my husband, except the post PET scan.

I have a question for all you warriors.. How long have you beed on pain meds. My husband is going on 2 years. He is 3 months shy, from being 2 years NED.

It's just trips me out that the pain can last so long.

Next, he is on his 2nd tooth infection in 4 months. One on a cracked tooth, we got removed. This was on the radiation side.

Now he has, another tooth infection on the opposite side of his mouth. He cleans his mouth all the time.

He is going to loose all his teeth at this rate.

 

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    what hurts (teeth)?

    Arndog64,

     

    I am not a good example as I only use the pain meds a few times.  Now magic mouth  wash I used a ton of..  I never had issues with my teeth, but can see how painful that would be to be continually fighting that battle.

     

    I wish you luck getting a handle on the pain meds, but if your teeth still hurt I can understand.  More importantly, you are 2-years NED, congratulations.

     

    Matt

  • katenorwood
    katenorwood Member Posts: 1,912
    #3
    it is frustrating

    Hello !

    When you say pain meds what do you mean ?  Opids.  I still use oxycotin at least 2x's a week if the pain is severe in the jaw and neck area.  I try my darndest not to though.  When I went through the surgery in Dec., they had a hard time controling my pain level because I had been on it for so long.  (1 yr.)  So unless an advil won't kick it, and the swelling and numbness is intense I will then use them.  Teeth isues simply suck.  I hope they resolve for him very soon.  Hoping both of us have resolution on the pain issues....mine is nerve damage.   Katie

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    #4
    katenorwood said:

    it is frustrating

    Hello !

    When you say pain meds what do you mean ?  Opids.  I still use oxycotin at least 2x's a week if the pain is severe in the jaw and neck area.  I try my darndest not to though.  When I went through the surgery in Dec., they had a hard time controling my pain level because I had been on it for so long.  (1 yr.)  So unless an advil won't kick it, and the swelling and numbness is intense I will then use them.  Teeth isues simply suck.  I hope they resolve for him very soon.  Hoping both of us have resolution on the pain issues....mine is nerve damage.   Katie

    Taper

    I no longer need pain meds daily but I do take them occasionally.  Considering he is still taking them daily, he will need to taper down his dose with his doctors advice.  If he quits abruptly he may or may not experience withdrawal symptoms.  Just a suggestion.  

     

    Sooner or later he will need to stop them.  Have you asked him what pain he takes them for?

     

    Tom 

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #5
    Pain Meds

    I've been using a very very low dose of opids for almost a year. I have active lung and bone cancer. Everyone is different. Use as little pain meds as possible, but don't be afraid to use them if they are needed. Rick.

  • arndog64
    arndog64 Member Posts: 537
    #6
    ToBeGolden said:

    Pain Meds

    I've been using a very very low dose of opids for almost a year. I have active lung and bone cancer. Everyone is different. Use as little pain meds as possible, but don't be afraid to use them if they are needed. Rick.

    Hey uses the pain meds for

    Hey uses the pain meds for his throat pain from treatment. He's been to his ENT a few times to discuss the pain issue and he scopes him and says everything looks fine, and proceeds to tell him, it may last the rest of his life. He has tried to not take them or even cut back. Before long the pain is at a 5 or 6. Maybe he can get a scan this visit. I still can't believe he has only had one scan post treatment. He has no other issues at this time. Besides his teeth hurting once in awhile. But, that just started a few months ago.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #7
    Pain Management Program?

    Hi Arndog,

    There are questions raised by your post. Two years of regular pain med therapy while not totally uncommon is still a long time. I've heard similar situations, especially with H&N cancers where pain is a lifelong side effect. There are Pain Management Programs that help identify and treat pain issues as well as wean people off of narcotic pain killers. This may not be an option for your husband but one worth checking into. 

    "T"




  • katenorwood
    katenorwood Member Posts: 1,912
    #8
    arndog64 said:

    Hey uses the pain meds for

    Hey uses the pain meds for his throat pain from treatment. He's been to his ENT a few times to discuss the pain issue and he scopes him and says everything looks fine, and proceeds to tell him, it may last the rest of his life. He has tried to not take them or even cut back. Before long the pain is at a 5 or 6. Maybe he can get a scan this visit. I still can't believe he has only had one scan post treatment. He has no other issues at this time. Besides his teeth hurting once in awhile. But, that just started a few months ago.

    I'm gonna try a nerve blocker

    Hello !

    The pain is real.  Yes, there are tons of people after tx's that endure this.  Now the trick is trying to find a way to deal with it.  I've tried gabapentin, and another one used for nerve pain.  They had put a long acting pain blocker in the site of my last biopsy in Dec., that lasted 4 weeks.  I felt normal....but it didn't last, and my ENT said it wouldn't.  No it's not like surgical pain, more a nagging never ending numbness and tingling in the neck and jaw.  It does get so intense I want to scream.  I will be discussing this with my ENT the end of the month.  I know that it is hard to deal with, but know he's not alone in it.  If I find something that works I will defineately share the info. with you !  Katie

  • George_Baltimore
    George_Baltimore Member Posts: 303
    #9
    fishmanpa said:

    Pain Management Program?

    Hi Arndog,

    There are questions raised by your post. Two years of regular pain med therapy while not totally uncommon is still a long time. I've heard similar situations, especially with H&N cancers where pain is a lifelong side effect. There are Pain Management Programs that help identify and treat pain issues as well as wean people off of narcotic pain killers. This may not be an option for your husband but one worth checking into. 

    "T"




    I'm still on

    hydrocodone every day.  Between my neck and throat, I go through about 60mg a day prescribed by my medical oncologist.  My treatment was back in 2004.  After about a year and a half, I stopped the pain meds and was fine.  I forget exactly how long that lasted.  I think I started back on hydro back around 2007 due to a rawness of the throat.  It's not really a stabbing pain, it's more of a constant achy discomfort.  The longest I can last without taking it is about six hours.  After that, my neck moreso than my throat becomes sore trying to hold my head up.

    As some of you know, I've been going through very painful chiropractic treatments to break up the fibrosis and lymphedema in my neck.  My neck doesn't look swollen at all but it was hard as a rock.  Since starting these treatments, I have regained some of the range of motion in my neck so that it is easier to drive.  Anyhow, the true test of my theory of not being able to swallow because of the fibrosis and swelling will be tested April 30th.  I have another esophageal dilation scheduled.  Right after the dilation my surgical ENT is going to prescribe a 10 day course of prednisone.

    About 3 or 4 months ago during a followup with my rad onc, he remarked about how my tongue didn't look as swollen as usual.  That day, I was on the 8th day of the prednisone prescribed by the ENT that was treating me for sinus problems.  It was the weaning down period when I was on just a half tablet.  When I got home, I decided to try swallowing a little water.  I took 4 very small sips of water and, surprise, surprise, none of it came back out of my nose nor did it make me cough.  That's what makes me think my swallowing problem is not due to the stricture but rather due to the neck fibrosis inhibiting the hyoid bone from moving.  We shall see after April 30th.  I'm keeping my fingers crossed.

  • Roar
    Roar Member Posts: 269 Member
    #10
    Pain meds

    I had this conversation the other day with someone- I guess we are all different - my pain was my tongue and throat - sores from radiation - I can only describe it as sun poisoning in your mouth and throat- I would have given anything to be able To eat. The pain meds didn't help with that only magic mouth wash helped and a lot of gargling with baking soda and salt and water mixture. In the end I had the pain patch and percocet - they knocked me out. I felt like a zomby - I think I wen 3 or 4 weeks after treatment. Then I stopped them- but I think depending on where the primary was determines what you will experience as far as pain goes post treatment - can't speak much as far as pain from side effects as I am only 4 months out of treatment. My theory is to try to get along without as much medicationas possible. I am not saying dont take meds! If you need them you have to take them but why work your kidneys harder than they have to work if you can get along with out them. 

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