oral mucositis

[johnco]

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

[RickM]

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.

[Superman]

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.

[johnco]

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.

[Superman]

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.

[scottmandue]

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.

[johnco]

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.

[RickM]

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!

[MRM]

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.

[johnco]

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

[MRM]

Praying for you, John. Hang in there.

[johnco]

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

[masraum]

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.

[HardDrive]

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.

[RickM]

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.

[johnco]

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

[rammstein]

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.

[johnco]

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

[HardDrive]

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?

[Nathans_Dad]

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.