Hi! New here........pain management issue

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Hi everyone. I've been lurking for a few days. There is so much information on this site, it's been so helpful! My husband is currently going through treatment for tonsil cancer. Tomorrow he will half way through his 7 chemos and 35 rads. He did great for the first two weeks,but as of the end of last week and just this week he is in so much pain. He flies through the chemo with no problems, apparently what he is getting is called "chemo light". The radiation is kicking his butt though. He just started taking hydrocodone last Thursday and by the weekend was taking the max dose. His nurse added a slow release morphine pill twice a day,so that he could back off the hydrocodone for fear of taking too much Tylenol. The overall pain is dulled a bit except for an area on his tongue. None of the pain meds touch the pain there. He is using the salt/baking soda rinse and also the Magic Mouthwash with Nystatin. Is this just something that he'll have to live with during treatment or can this tongue pain be managed better? Anything topical he can use?

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  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Magic Mouthwash
    If he's not already doing this, remind him that the longer he is able to hold the magic mouthwash in his mouth, the better the pain relief. Some of the mouth products are designed to be swallowed. Mine was. I just couldn't do it; couldn't handle the benadryl. So, I'd hold it in my mouth for extra long, then spit.

    Deb
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    D Lewis said:

    Magic Mouthwash
    If he's not already doing this, remind him that the longer he is able to hold the magic mouthwash in his mouth, the better the pain relief. Some of the mouth products are designed to be swallowed. Mine was. I just couldn't do it; couldn't handle the benadryl. So, I'd hold it in my mouth for extra long, then spit.

    Deb

    Thanks. His is designed to
    Thanks. His is designed to swallow. The directions just say " swish and swallow " . Now we know he should hold it in there for a bit. Thank you so much, hope this helps him!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Unfortunately
    the topical anesthetics, like the lidocaine in the magic mouthwash have a property called "tachyphylaxis". When they are used repetitively, their numbing ability rapidly diminishes. This makes them of limited value for treating the type of pain you are describing.

    The limitations of taking the oral pain med is that you can overdose on tylenol. Other than that, there is no upper limit on their use. So the trick will be to go with meds that don't contain the tylenol. He will simply need switched from the percoset to other drugs which don't contain acetominophen. He is probably a candidate for a skin patch right now, with supplemental oral meds to handle the rough spots. I'd keep going back for pain management. They have done this before, and can help him quite a bit beyond what has already been ddone.

    best

    Pat
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    Unfortunately
    the topical anesthetics, like the lidocaine in the magic mouthwash have a property called "tachyphylaxis". When they are used repetitively, their numbing ability rapidly diminishes. This makes them of limited value for treating the type of pain you are describing.

    The limitations of taking the oral pain med is that you can overdose on tylenol. Other than that, there is no upper limit on their use. So the trick will be to go with meds that don't contain the tylenol. He will simply need switched from the percoset to other drugs which don't contain acetominophen. He is probably a candidate for a skin patch right now, with supplemental oral meds to handle the rough spots. I'd keep going back for pain management. They have done this before, and can help him quite a bit beyond what has already been ddone.

    best

    Pat

    Thanks
    Thank you Pat. He plans to call his PA today to see what else can be done. She also prescribed some oxycodone to take instead of the hydro,but he said it didn't work as well. Hopefully they'll work out the right combo......and soon!

    Lisa
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    GOBLUE124 said:

    Thanks
    Thank you Pat. He plans to call his PA today to see what else can be done. She also prescribed some oxycodone to take instead of the hydro,but he said it didn't work as well. Hopefully they'll work out the right combo......and soon!

    Lisa

    pain patches
    There are some excellent pain patches out there and hydrocodone only has to be used for the breakthrough pain.

    My husband has used two different kinds: the first was Fentanyl. The one he uses now is Butran. Works well for him.

    Hope this helps.
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    pain patches
    There are some excellent pain patches out there and hydrocodone only has to be used for the breakthrough pain.

    My husband has used two different kinds: the first was Fentanyl. The one he uses now is Butran. Works well for him.

    Hope this helps.

    Thanks! We'll ask about the
    Thanks! We'll ask about the patches.
  • jkinobay
    jkinobay Member Posts: 298 Member
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    GOBLUE124 said:

    Thanks! We'll ask about the
    Thanks! We'll ask about the patches.

    Pain Mgt.
    I may have missed it but does your husband have a PEG tube? If he does, or even if not, ask your Doc about Roxicet (liquid Percocet). It is a red liquid that worked very well for me through the tube. One to two tsp. for pain through the tube or swallowed orally (taste is OK, like cough syrup), dosage I think was every 4-6 hours. I tried to limit use to bedtime and maybe once more during the night. It was amazing but it is addicting, as is Hydsrocodone and the other narcotic based meds.

    Good luck...............I wish the best for both of you. If he is half-way through treatments he will do fine. It is not at all fun but doable. The alternative is unacceptable of course.

    JK
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    jkinobay said:

    Pain Mgt.
    I may have missed it but does your husband have a PEG tube? If he does, or even if not, ask your Doc about Roxicet (liquid Percocet). It is a red liquid that worked very well for me through the tube. One to two tsp. for pain through the tube or swallowed orally (taste is OK, like cough syrup), dosage I think was every 4-6 hours. I tried to limit use to bedtime and maybe once more during the night. It was amazing but it is addicting, as is Hydsrocodone and the other narcotic based meds.

    Good luck...............I wish the best for both of you. If he is half-way through treatments he will do fine. It is not at all fun but doable. The alternative is unacceptable of course.

    JK

    No PEG
    Hi. Thanks again for everyone's help. No he doesn't have a PEG tube. His radiation oncologist told him that if he lost too much weight he would of course have to get one,but he wanted my husband to try as hard as he could not to get one. On the same day we met with the medical oncology team and they said "you'll probably have to get a PEG tube"...lol. I get the feeling those two departments don't get along well. Anyway, he is trying as hard as he can to manage and get the calories in. Today was a good day and I think he just needed to let the morphine build a little bit in his system. He's on that (low slow release dose) and 1 hyroco/apap every 4 hrs. He's also using the baking soda/salt wash more and keeping the Magic Mouthwash in his mouth longer. Everything works together to help.Whatever he can do so that he can keep the calories going down is great. He has only lost about 3 lbs so far which I think is pretty good. My daughter and I (she is 7) let him eat in peace and read the paper or watch tv since it takes him longer,but he always manages to get it down. He'll probably never want to eat Cocoa Wheats or a shake again once this is over.....but they're working for him now!(actually he ate a fried egg on a piece of toast tonight and I was amazed) :)
    Thanks again for the well wishes. I'm so grateful I found this site.
    Lisa
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Eggs and Syrup : )
    GOBLUE124,

    It looks like you're really taking control of your husbands treatment and that is great. Just remember that the Caregiver has to take care of themselves as well....

    Just a little note to add about eating. I would eat scrambles eggs, but I would use Sugar Free Syrup on them to help make them slide down easier. Can't say how they tasted as my taste buds were shot after the first week of radiation anyway : ) but I got some other protein in. I had the Peg Tube, but wanted to keep swallowing some type of food.

    As for the Baking Soda and Salt solution, I used it as often as every 30 minutes if needed. The Nurses recommended that I use 1 teaspoon of each in 1 quart of water, mixed and at room temperature. As I went further in Radiation, I increased the amounts to 1 Tablespoon of each in the quart of water. It helped.

    Roselvr found Actiq lollipops for her husband to use during the day, he would use roughly one a day, sucking on it ocassionaly when he had discomfort in his mouth and throat.

    My Best to Both of You and Everyone Here
  • tommyodavey
    tommyodavey Member Posts: 727 Member
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    MarineE5 said:

    Eggs and Syrup : )
    GOBLUE124,

    It looks like you're really taking control of your husbands treatment and that is great. Just remember that the Caregiver has to take care of themselves as well....

    Just a little note to add about eating. I would eat scrambles eggs, but I would use Sugar Free Syrup on them to help make them slide down easier. Can't say how they tasted as my taste buds were shot after the first week of radiation anyway : ) but I got some other protein in. I had the Peg Tube, but wanted to keep swallowing some type of food.

    As for the Baking Soda and Salt solution, I used it as often as every 30 minutes if needed. The Nurses recommended that I use 1 teaspoon of each in 1 quart of water, mixed and at room temperature. As I went further in Radiation, I increased the amounts to 1 Tablespoon of each in the quart of water. It helped.

    Roselvr found Actiq lollipops for her husband to use during the day, he would use roughly one a day, sucking on it ocassionaly when he had discomfort in his mouth and throat.

    My Best to Both of You and Everyone Here

    Swallowing
    I am surprised he is able to eat toast w/o it aggravating his throat. Only soft foods for me. Even a soft flour tortilla scratches my throat.

    My favorite breakfast meal is Cream of Wheat with some brown sugar on top. I make it extra smooth by adding milk after cooking it. My wife now loves it too and we both wonder why we haven't eaten it since childhood. I loved it back then.

    Same suggestion with the scrabbled eggs, nice and soft. Soup, canned peaches, any and all fruit and veggies that are smooth. I may have lost a few pounds but I am getting enough calories. Also love mac n cheese, extra creamy of course. A Boost or Ensure if it feels too sore.

    One more suggestion. I sip water all day long to keep my swallowing active and to stay hydrated. If you get dehydrated it makes it hard to swallow. Lots of water.

    You're heading towards the finish line. A few more weeks and we'll both be through.

    Tommy
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    Swallowing
    I am surprised he is able to eat toast w/o it aggravating his throat. Only soft foods for me. Even a soft flour tortilla scratches my throat.

    My favorite breakfast meal is Cream of Wheat with some brown sugar on top. I make it extra smooth by adding milk after cooking it. My wife now loves it too and we both wonder why we haven't eaten it since childhood. I loved it back then.

    Same suggestion with the scrabbled eggs, nice and soft. Soup, canned peaches, any and all fruit and veggies that are smooth. I may have lost a few pounds but I am getting enough calories. Also love mac n cheese, extra creamy of course. A Boost or Ensure if it feels too sore.

    One more suggestion. I sip water all day long to keep my swallowing active and to stay hydrated. If you get dehydrated it makes it hard to swallow. Lots of water.

    You're heading towards the finish line. A few more weeks and we'll both be through.

    Tommy

    Great ideas! :)
    Thanks MarineE5 and Tommy. The "toast" he had was lightly toasted and heavily buttered with a runny egg on it....soft and he said it didn't hurt. My husbands breakfast of choice is Cocoa Wheats made with whole milk(I make him a double serving) he adds a little sugar and some more whole milk and it's close to 800 calories in that bowl. He'll eat the Progresso loaded potato soup after I add some cream and veg oil to bump up the calories and then puree it. Other than that it's ice cream, shakes, ensure etc. His other problem besides the swallowing is that prior to radiation he had 6 teeth pulled. Mostly molars in the back so chewing is almost impossible right now. I try to keep track of his calories on myfitnesspal.com, it's so easy and most of the foods are already in their data base. Just search and click.

    Today seems to be another good day for him. One thing I've learned is that every day is different.

    Tommy~ Best of luck towards your own finish line. Hang in there.

    Lisa
  • dlygoblue
    dlygoblue Member Posts: 28
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    GOBLUE124 said:

    Great ideas! :)
    Thanks MarineE5 and Tommy. The "toast" he had was lightly toasted and heavily buttered with a runny egg on it....soft and he said it didn't hurt. My husbands breakfast of choice is Cocoa Wheats made with whole milk(I make him a double serving) he adds a little sugar and some more whole milk and it's close to 800 calories in that bowl. He'll eat the Progresso loaded potato soup after I add some cream and veg oil to bump up the calories and then puree it. Other than that it's ice cream, shakes, ensure etc. His other problem besides the swallowing is that prior to radiation he had 6 teeth pulled. Mostly molars in the back so chewing is almost impossible right now. I try to keep track of his calories on myfitnesspal.com, it's so easy and most of the foods are already in their data base. Just search and click.

    Today seems to be another good day for him. One thing I've learned is that every day is different.

    Tommy~ Best of luck towards your own finish line. Hang in there.

    Lisa

    Pain Management
    Lisa,
    I'm new as well, and also a head cancer survivor. My physicians kept telling me that pain mamagement includes taking your pain mediactions on a scheduled basis basis as opposed to "as needed" basis. That way, your husband stays ahead of the pain, as the miedication is constantly in his system and he avaoids the roller coaster effect of pain/no pain/pain. The pain patch, as people have recommended, will help enormously. Hydrocodone worked well for me as a supplement. And yes...every day is different. Go Blue!
  • dlygoblue
    dlygoblue Member Posts: 28
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    GOBLUE124 said:

    Great ideas! :)
    Thanks MarineE5 and Tommy. The "toast" he had was lightly toasted and heavily buttered with a runny egg on it....soft and he said it didn't hurt. My husbands breakfast of choice is Cocoa Wheats made with whole milk(I make him a double serving) he adds a little sugar and some more whole milk and it's close to 800 calories in that bowl. He'll eat the Progresso loaded potato soup after I add some cream and veg oil to bump up the calories and then puree it. Other than that it's ice cream, shakes, ensure etc. His other problem besides the swallowing is that prior to radiation he had 6 teeth pulled. Mostly molars in the back so chewing is almost impossible right now. I try to keep track of his calories on myfitnesspal.com, it's so easy and most of the foods are already in their data base. Just search and click.

    Today seems to be another good day for him. One thing I've learned is that every day is different.

    Tommy~ Best of luck towards your own finish line. Hang in there.

    Lisa

    Pain Management
    Lisa,
    I'm new as well, and also a head cancer survivor. My physicians kept telling me that pain mamagement includes taking your pain mediactions on a scheduled basis basis as opposed to "as needed" basis. That way, your husband stays ahead of the pain, as the miedication is constantly in his system and he avaoids the roller coaster effect of pain/no pain/pain. The pain patch, as people have recommended, will help enormously. Hydrocodone worked well for me as a supplement. And yes...every day is different. Go Blue!
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    dlygoblue said:

    Pain Management
    Lisa,
    I'm new as well, and also a head cancer survivor. My physicians kept telling me that pain mamagement includes taking your pain mediactions on a scheduled basis basis as opposed to "as needed" basis. That way, your husband stays ahead of the pain, as the miedication is constantly in his system and he avaoids the roller coaster effect of pain/no pain/pain. The pain patch, as people have recommended, will help enormously. Hydrocodone worked well for me as a supplement. And yes...every day is different. Go Blue!

    Exactly!
    Hi Go Blue! :) He is taking his meds on a schedule. I think (but don't know for sure) that he had to let the slow release morphine build up in his system a little bit. He's had pretty good days for the last few. Tonight he even ate a small pbj sandwich. Two and a half weeks to go and we cross the finish line. Then the healing.
    Best of luck to you!
  • Roselvr
    Roselvr Member Posts: 30
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    GOBLUE124 said:

    Exactly!
    Hi Go Blue! :) He is taking his meds on a schedule. I think (but don't know for sure) that he had to let the slow release morphine build up in his system a little bit. He's had pretty good days for the last few. Tonight he even ate a small pbj sandwich. Two and a half weeks to go and we cross the finish line. Then the healing.
    Best of luck to you!

    Sorry; I haven't gotten here
    Sorry; I haven't gotten here much.
    With his pain being so bad 1/2 way through; ask nicely for the Actiq pop script. The pops are made for this pain & for some reason doctors are stingy with prescribing them. As Marine said; my hub finally got them at the end; I started asking for them in the beginning; which was probably my 1st mistake- sounded like I was a drug user.. Tell them you read Brett Hudson's cancer blog here is the link to his other blog The Klinik- he talks about his pain & how he was told about the pops & same story; they didn't want to give them. When he finally did get them; it was the only thing that really worked & I can tell you that it's true. The medicine in the pop form coats the tongue & throat. When my hub 1st started them; he put it in his mouth about 5 minutes at a time to see how much he really needed to get rid of his pain & most days he only needed 1 or 2 pops.

    There were days I did give him the percocet pills in the morning; the trick was to keep up on pain meds. What was good about the percocet was it had Tylenol. My hub tried liquids; I think there were 2; one was a percocet liquid; another like Vicodin- the fentynol patch which made him throw up after 3 hours- nothing actually helped with the actual sore throat pain except the pops.

    My hub tried magic mouthwash & at one time decided the baking soda swish was better.
    The other thing is to make sure he doesn't have thrush.

    Our pharmacy had to order them; took 3 days to get them in. Call your pharmacy to see if they can be ordered
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    Roselvr said:

    Sorry; I haven't gotten here
    Sorry; I haven't gotten here much.
    With his pain being so bad 1/2 way through; ask nicely for the Actiq pop script. The pops are made for this pain & for some reason doctors are stingy with prescribing them. As Marine said; my hub finally got them at the end; I started asking for them in the beginning; which was probably my 1st mistake- sounded like I was a drug user.. Tell them you read Brett Hudson's cancer blog here is the link to his other blog The Klinik- he talks about his pain & how he was told about the pops & same story; they didn't want to give them. When he finally did get them; it was the only thing that really worked & I can tell you that it's true. The medicine in the pop form coats the tongue & throat. When my hub 1st started them; he put it in his mouth about 5 minutes at a time to see how much he really needed to get rid of his pain & most days he only needed 1 or 2 pops.

    There were days I did give him the percocet pills in the morning; the trick was to keep up on pain meds. What was good about the percocet was it had Tylenol. My hub tried liquids; I think there were 2; one was a percocet liquid; another like Vicodin- the fentynol patch which made him throw up after 3 hours- nothing actually helped with the actual sore throat pain except the pops.

    My hub tried magic mouthwash & at one time decided the baking soda swish was better.
    The other thing is to make sure he doesn't have thrush.

    Our pharmacy had to order them; took 3 days to get them in. Call your pharmacy to see if they can be ordered

    Thanks!
    I'll check out the pops. Most of the pain seems to be under control except for a spot on his tongue and the back of his throat. His nurse upped the slow release morphine and had him back off of the hydrocodone. With half a week to go his taste buds finally went. I told him he was lucky they stayed so long. Now food tastes bad,but he still struggles through his bowl of cocoa wheats in the AM....drinks mostly the Ensure Enlive juices since everything else is just too thick. I think those pops might be the answer to eating better. I'll ask about those for sure. The exhaustion has hit him now, so it's harder to get the calories in. Only 1 chemo and 4 rads to go and he's done! Then the healing.
    Thanks again.
    Lisa
  • dsexpress
    dsexpress Member Posts: 6
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    pain
    My husband had sore's and alot of pain on the tongue. We found out the the ratiation was hitting on the fillings in his teeth and bouncing off and burning the tongue. He started wearing his guards for his teeth to radiation and that stopped the sore's on his tongue and helped ALOT.
  • GOBLUE124
    GOBLUE124 Member Posts: 12
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    dsexpress said:

    pain
    My husband had sore's and alot of pain on the tongue. We found out the the ratiation was hitting on the fillings in his teeth and bouncing off and burning the tongue. He started wearing his guards for his teeth to radiation and that stopped the sore's on his tongue and helped ALOT.

    Guards
    My husband had 6 teeth pulled prior to any treatment and at the same time the dental dept at the U of M also made him some specific guards that he bites down on and wears over his teeth that have fillings during radiation. These are specific guards that he only uses during radiation, in fact they keep them there for him with his mask. I think that his tongue issues come from radiation hitting the base of tongue area he had biopsied when they took his tonsils. It's very sore, swollen and hard to move around.