oral mucositis
 

anyone ever experience this? I am right now. I've been stabbed, shot, burnt, broken, crushed, sliced, diced and even run over by a lawnmower. but I think I'd submit to all that again rather than experience those ulcers. since Monday morning I've had about 6 hours sleep and actually got a donut down wed. morn. other than that it's been milk and water and that takes a lot of time and a lot of cussin. lost 13 lbs in 4 days. . after radiation today.. it was so bad that if a 18 wheeler turned in front of me, I wouldn't have tried to avoid him. delirious from the pain, I had a hard time keeping the car on the road. nothing dulls the pain.. believe me I've tried. and I can look forward to another month of this. not sure I can tough it out. cut my calf off.. no problem.. wrap it with toilet paper and hit the emergency room in the morn. a cut to the bone.. duct tape until you find needle and thread. dislocated finger.. pop it back in... but this!!!! nothing I can do, nothing I can take will end the 24hr pain like I've never felt before. hard to describe other than imagine someone taking a grinder to your mouth and throat and tongue, buff it up real good, add some muriatic acid, shake and stir, add salt as needed. someone shoot me please

God, I hope this passes quickly.

Sounds like you need a very powerful painkiller....along the lines of Morphine to deal with this. For mouth and tongue there must be some type of steroid based salve.

Yeah, I would think there is something they can give you for your comfort. I hope so. I'm still laughing from the stories you told about you and your brother, months and probably years ago. If you could survive those experiences and then make the report I see above.....well......I know it must be a lot of pain. You're NOT a whiner. See if the docs can give you something for your comfort.

in between screams of unbelievable pain, i have a quite moment now and then and looked for something off the shelf. oral anesthetic spray, might as well use gasoline, anything with alcohol and I have to be removed from the ceiling. can't actually concentrate and read all the labels so Ijust came home to tough it out.

No, I mean something REAL to make you comfortable. Oxycodone. Morphine. Whatever. I'm not one to take prescription meds for fun, but those drugs are prescribed for a purpose. Just like the one you've described. I wouldn't worry about how or whether you function on these drugs. Indeed, they would ideally make you unconscious. They've got drugs that can make you enjoy, and then not remember, the entire weekend.

Did a quick google and someone recommended sucking on ice chips.
and found this:

Pain from oral mucositis afflicts from 40% to 70% of patients receiving chemotherapy or radiation therapy. Current methods of clinical pain management (for example, topical anesthetics, systemic analgesics) have limited success. In a pilot study, we examined the ability of oral capsaicin to provide temporary relief of oral mucositis pain. Capsaicin, the active ingredient in chili peppers, desensitizes some neurons and has provided moderate pain relief when applied to the skin surface. Oral capsaicin in a candy (taffy) vehicle produced substantial pain reduction in 11 patients with oral mucositis pain from cancer therapy. However, this pain relief was not complete for most patients and was only temporary. Additional research is needed to fully utilize the properties of capsaicin desensitization and thus optimize analgesia.

Morphine was mentioned in an other article.

Hopefully some of the BBS docs will chime in.

Hang in there.:(

I can pretty much turn off pain after a while. ignore it. after radiation treatment, it comes back 10 fold for a couple hours. takes me into the middle of the night to gain control again. and we start it all over the next afternoon. I can understand why some quit the treatments and let nature take it's course.

John, Perhaps a strong non-steroidal anti-inflammatory drug (like Toradol) will be effective. Combined with a pain killer you may have good results. These can likely be mixed into an oral suspension to make ingestion tolerable.

Best of luck!

Consider morphine. It is extremely good at blocking the pain receptors. Pain medicine is there to protect you from needless suffering. Take it. I like the idea of ice chips and NSADs too. They make intuitive sense. Above all, experiment until you find somethign that works for you. Please don't count on your body turning off the pain. You don't need to suffer that much. God Bless.

been up since last week so I've done a lot of reading. 4 molars had to be removed so the ice gets in the unhealed holes. ice also hurts on the tongue sores and cheek sores. it's really nasty in there. looks like my mouth was sandblasted. just moving my tongue hurts. swallowing my own saliva gets a grunt and grimace. just ground up a couple of percocet and mixed with water in a table spoon.. wasn't fun. maybe I should snort them.. but it's down that far also. I've had morphin once before when they were sewing the back of my leg together. I like! not much for pain meds, but since the doc said I only used a tiny bit, I asked him if I could take the rest home. no luck. so it's friday night, next appointment Monday, but doc seldom there. morphine might be hard to find right now. wish I was still dating one of those nurses from long ago. it's subsided a bit for now. I'm not sobbing, cussing, banging my legs against the desk and gasping for air right now

Praying for you, John. Hang in there.

got it whipped right now. just cleaned out the old dead flesh while I could and got it under control. still hurts, still burns, still can't swallow but the pain level is low enough I can ignore it. a couple hours ago you could have offered me this or drag me around the town by my nads. I would have grabbed you a six pack on the way back and took another ride just for the fun of it. I have had some serious injuries i my life. all my life.. the pains then would be a party compaired to what I had to endure a couple hours ago. you have no idea

Wow, I had no idea. Good luck in everything that you're going through. I'm praying for you and I'll have my mother in the FL panhandle praying for you. We'll get you from the East and West.

My wife is a pediatric pain physician at Seattle Childrens Hospital.

She said you need to get with your doctor and get a serious pain management plan, and if he won't do it, go to one that will.

She mentioned a viscous lidocain solution for topical care, and opioids for general pain. She also said that it is important to keep things cleaned out.

DO NOT let you your doctor be unresponsive to your pain. Doctors are, of course, fearful of turning you into a junkie. Its a well founded fear. But NO pain meds? Thats not right.

Might I suggest that you get a hold of some marijuana? To be clear, this is my idea, not the wifes.

I'm thinking weed, even through a water pipe, would be hell.

I agree that many physicians initial response will be Tylenol with codeine.....Bull$**** to that.

You pay the doctor for a service and they should respond at any time to your pain management needs. A good doc will be more than happy to bring you relief.

Hang in the bud.

actually he's my radiation guy and I've only seen him2 or 3 times. his nurses strap me down and light me up. I think I saw him monday and that's before it got bad. chemo and radiation merged together at that point, but it wasn't bad at that time. he gave me lid/nystatin/mylantra/benadryl. it helps some but the afternoon/night after I get nuked it gets worse. since I get it 5 days a week, it tore me up starting wed/thurs. not sure. actually I don't remember the last couple weeks. anyway.. I haven't slept much and have eaten even less. the first week was nothing. didn't notice any change. second week it all comes together and by then I'm dazed and confused. 8-10 hours sleep and one donut eaten the entire week kind of makes you goofy, forgetful. some pain and aggravation but nothing I couldn't handle. bad during the night but by appointment time, I'm so zoned out I couldn't tell you if I drove there or not. last night bad.. by the time I got there today, I was sort of there, sort of not.. doctor not there for script.. by the time I got into the car.. well I sat there 10 minutes trying to get control. the hour ride home ending in a fiery crash would have been welcome relief. I'll have to wait till monday to get this sorted out. I do have pain meds. I get them filled every time I get a script, but they just sit there for years. I say hello to pain almost every day, but after a while I forget he's there.. it's nothing I can't handle

My father went through this about 2.5 years ago, and it wasn't quite so bad on his mouth. Sorry to hear this from you.

Dude- you have GOT to eat somehow. If it takes pain meds to help you eat, get them. And if it took hitting a bong to get your appetite, do it. Please try to eat, maybe just oatmeal or something. My dad did a lot of oatmeal.

Good luck man, keep fighting. You'll make it through, I can tell.

it's not like I'm not hungry. I can chew things up, but no way I can swallow. I even scream for ice creme. drinking some ensure to keep from falling over.. this is caused by the radiation and chemo for cancer. I've done 10 and only 30 to go. can hardly wait for monday afternoon to roll around

But man, this eating thing......look, you gotta have nutrition! They are basically filling you with poison, then blasting with you a ray gun. Your body needs fuel to keep up the business of living.

I wasn't suggsting pot just for effect. Anything that get your appetite up and give you some relief from pain would be welcome.

WTF? Is there any single doctor who is calling the shots on your treatment?

Sorry to hear about your discomfort. I'm not an oncologist, but oral mucositis can be very tough to treat. The systemic pain medications can help some, but topicals will probably be more effective. Unfortunately they don't last very long because of the increased blood flow in the oral mucosa.

Oral mucositis is a common complication of chemo/radiation. Both treatments are aimed at damaging rapidly dividing cells. If those cells are cancer cells then great. But it also affects rapidly dividing cells elsewhere...like in your mouth.

Call your oncologist. There is no reason for you to endure this without pain relief.

John,

Sorry to hear of your plight. I've been gone from the board for awhile, so I don't know your story. However, if you're in that much agony...well, you shouldn't be. There are alternatives for pain management. Maybe not a painfree existence, but better than what you're suffering through right now. If you can't take pills, there are liquids/elixirs, extended-release patches, etc.

Like HD suggests, give your oncologist a call. You probably won't get him/her tonight or over the weekend. You'll probably get whomever's covering for the weekend. Or you might get lucky and get him/her. You won't know 'til you try. And oncologists are used to taking care of issues like this. Due to the nature of their business, generally they're not as hard-nosed about the "no narcotic prescriptions after regular business hours" policy that most docs have.

And if all else fails, go to the ER for proper pain relief.

You're not supposed to sweat out this stuff alone.

edit: Rick beat me to it. So there: three people telling you what to do, now.

What HardDrive´s wife suggests.

Topical viscous lidocain/Xylocain solution. We use it all the time on small children when they first come in contact with the Herpes simplex typ I virus and often develop a very nasty and long lasting oral inflammation with ulcers and severe pain.

Would that be off the counter in the US ? In that case, go pick up a bottle. Rinse your mouth thouroghly. Don´t swallow - it is not dangerous but has no effect via the GI canal.

I'm doing fine. i've got it whooped for now. I've been hanging because the hallucinations usually start kicking in about the 5th day without sleep. full force madness at 7 days.. I like those and they're running late. maybe nothing's happening because I cheated and slept an hour or so each day. just now I zoned out for 15 minutes and woke soaking wet.. twice. actually the pain isn't bad right now and I only feel it when I quit typing or concentrating on something else. I managed to remove some bad skin from the back of my throat so it feels better now that i can spray it down. now that's hard to do. try holding a flashlight just right down your throat, depress your tongue, grab some meat with tweezers and suppress your gag reflex at the same time while looking thru cheap glasses that just don't line up with what you're trying to see. honestly.. I would really enjoy a big juicy steak, a hambuger, a taco.. anything.. it's not that I'm not hungry. it the feeling of trying to swallow a redhot piece of steel covered in glass that expands as you try to swallow. water, ice, icecreme.. even my own spit hurts like hell. getting down past that spot behind my tongue that's cherry red I can't quite get to yet is the hard part. pain is respecting my authority right now. hmmm maybe the delusions are here now and I wasn't paying attention. type something and letters missing or somewhere else. a compose letter box just popped up and the quick reply box keeps changing and realigning the text. way cool. if it gets bad tomorrow I'll call one of my doctor friends and collect on a few favors owed to me.

John,

I hate to read about you having that much pain - you should not need to! There are several conditions where pain can be very difficult to relieve but IMO that is any doctor´s most important task - not least as a pediatrician. It may sound silly, even out of place with a whole Ocean between us, trying to give you advice over the Internet.

This is bull*****.

Johnco, what city are you in?

As far as I know, an American pharmacy will not accept an Internet prescription from Sweden. If they did, you would have it delivered yesterday.

thanks for the concern but I'm not having much more than a sore throat at the moment. earlier today was a different story. once long ago I had to hold my arm close so it wouldn't fall off and walk around the house watching the bones in my leg move at 6 years old so this is no big deal. I've got a bottle of percocet and one of lortab and probably more around the house. don't need anything at the moment except a couple hours sleep. no more radiation until Monday so I'm fine until then.. I have several doctor friends that owe me favors and I know enough pillpopper friends that could provide me with anything I might need. I so seldom use any kind of pain relief because it rarely does any good for me. you guys show more concern than my own family. thanks

John, my Mom went through this,
Viscous Lidocaine helped her alot...as for being in that much pain..call your Dr. or call your friends.
We know you have a high threshold for pain, but enough.
Rika

it's not too bad this morning. going to the drug store in a little while to see what I can find. I can actually focus enough to check labels today

John,
for the Viscous Lidocaine you will need a Rx, those 'Oral gel' type gel's will most likely not be strong enough/ you can try.
You also need to stay hydrated. Chill some Pedi-lite..comes in flavors.
Call your Dr.
Call your Dr.
Rika

I wont harp on it any more but since you mention 30 more treatments I have to throw one more suggestion at ya. I would consult with a Otolaryngologist (ENT) who has experience in this field. Your Radiologist or Oncologist should have a recommendation. IMO, the side effects of your treatment should be monitored and managed closely as they can lead to problems worse than what your treating.

If you can't get any relief from your doc, try swishing some oragel, or whatever for a toothache or teething baby, swish and spit. There is prescription stuff you can get that is like 5 or 8% lidocaine. They have compound with lidocaine and some anti-fungal they use for thrush

You sloughed the lining of your GI system. Probably got some wierd BM's too I bet. Did you get any vision disturbances?

tried some anbesol the other day. should have used my lighter instead. it might have killed the nerve endings. barely got out of the pharmacy. old retired guy working part time decided it was time to share his life story as my knees were wobbling. after 10 minutes or so telling me his cancer story he explained in minute detail how he had to make this stuff one time long ago and that it was lidocain etc and which one did what..I was fading fast. I begged him to fix it up before I passed out. ran to the truck and swill a bit to quench the fire some and after driving home I notice I left half my stuff in the basket. after receiving my first chemo I started getting tunnel vision later while working. and a little more but with colors the next day.. BM? you've got to put something in to get something out

Monday I may have enough awareness to ask the doc all these questions. it was like one day evrything was going good, I get a phone call and the next thing I remember I'm strapped down in a machine a couple weeks later. don't really remember much the last month or two. finally woke up enough to ask doc what was going on this week. stage 3 N1 L1 one lymph node and tonsil. everything else is just a blur.

Dude this sucks, you need to get some meds ASAP! As of yesterday! This is what doctors and drugs are for.

I'm no MD but sounds like you should be on a IV to keep yourself hydrated too.

I wouldn't wait for Monday.

John,
I'm praying for you and your health, wish I could do more...

Dare I add....marijuana? It's been know to help glaucoma pain and restore appetite to cancer and HIV survivors.

Dam johnco, I don't have anything to add. Good advice has already been given. My family will keep you in our thoughts. Godspeed on the recovery.
Scott

all good advice guys, thanks.. sometimes you just have to grin and bare it though. I've learned what to do right before the pain sets in and have managed to keep it down to an minor aggravation(yeah, right). except for a bit earlier when I waited a little too long and barely made it home still standing. so far so good although I still can't swallow anything but liquids. considered going to work but passed out before I could convince myself to walk out the door. I've got to have two cars road ready by next weekend for cruising the coast in Mississippi. too many people counting on me and not coming thru for someone is something I never do. my daughter has been planning on driving my 62 olds there since last year. can't let my baby down. a little pain instead of major disappointment is a good trade to me

Make a tea and take it as an enema, though I suppose a lot of your problem is not so much appetite as lack of a decent lining going from mouth to belly