oral mucositis

[johnco]

pot keeps getting advised.. funny thing is after many years long ago dealing the stuff by the pound, duffle bags of it, I don't even know anyone that smokes it anymore and wouldn't even know who to ask. someone gave me a joint long ago and it sat in my desk drawer for many years. must be 25 years ago I quit smoking

[johnco]

if I could swallow, i'd be eating steak right now. tried a bowl of soup but couldn't finish it. everything tastes like cardboard and every liquid tastes salty. even chocolate milk tastes like salt water. strange thing was when I put salt in water to rinse my mouth it tasted like cardboard smells. better living through chemistry... not

[RickM]

Originally Posted by john70t

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

John, I don't think weed is to reduce Glaucoma pain. There is no sensation associated with the condition..that's what makes it so dangerous. I believe weed reduces the interocular pressure that chokes and damages the optic nerve.

[Hugh R]

Dude, just saw this. I hope you're feeling better. I wish I could be there to drink some of your homemade lighter fluid with you. Hang in there.

[johnco]

Hugh, I tried a shot of vodka hoping it would help me sleep the other night. don't think I will try it again soon. bought some anti bacterial alcohol free mouthwash this morning . opening the bottle as I got to the truck and before I started screaming from the dry mouth and pain..okay, I'll admit there were tears and some yelling.. I slammed it back.. huge mistake! that's when the screaming began. I've got some new dents in the roof of my truck now. a friend dropped off a few demerol for tonights fun so hopefully I can get a few hours sleep.

[john70t]

John, the localized pain aside, plain active cultures yogurt might help put some of the good bacteria back into the GI tract after the antibiotics have done their number. Simple, easily digestable foods like patially-cooked veggies(carrots/cauliflower) will help keep your strength up. No McD's. You also need vitamin C and lots of clean water to dilute the crap going into the liver from draining lymph nodes.
Health is a whole body thing.

Clove oil might help as a temporary topical treatment while waiting for your "doc". They add this to temporary filling material for teeth, but it most likely wouldn't be good to digest it.

[svandamme]

Wodka is wrong stuff for pain, it' only pumps you up in general, and that will make it feel worse
better off with Scotch , although tat would probably burn just as much going in, it's just the buzz that's different after get's in your blood

can't you get a couple of bags of vitamins inravenously from your doc?
brute force nutrition , they could probably let one drip while you go for any other treatment you are receicing, takes em less then 5 minutes to stick you, and on a fast drip , maybe what, 10 minutes??
hell, they do it for just about anything you enter a hospital for, and it's not expensive either, it's just fluids and vitamins, coma patients live off this stuff, i can imagine anybody who is sick, would benefit from it, even those who still can eat by themself sometimes get it

[john70t]

Tooth/mouth pain is no joke. The path to the brain is very short.

A few decades ago I had my wisdom teeth removed, and woke up up as they were yanking the last. One shrugged, looked at the other, and said "I guess we are done". I tried to tell them to get all the roots and chips but couldn't.

The reason I woke up was because there was no attending anestesiologist. They are allowed by AMA rules to attend/bill multiple concurrent surgeries, and mine apparantly had written a perscription for some nurse to monitor and gone to lunch. Greedy, lazy doctors.

-I got a jaw abcess soon after that, and when he punched through my jaw with an industrial-strength needle, I could swear I was floating two to four feet above the bench. A couple torn off fingernails and a dislocated sholder was nothing in comparison.
-From the abcess I got a bout of peri/endo-carditis, and spent a year sparring in the ring with the grim reaper.

I know you're in a lot of pain John, so make sure you have someone knowlegeable go with you to the doctors to witness and verify your care/treatment plan. Research well.
Don't let them pass the buck with your very existence.

[KevinG]

Johnco -

Amgen makes an oral mucositis treatment called Kepivance (Palifermin) - ask your doctor

Here is a link to their web page

http://www.amgen.com/patients/disease_info_oral_mucositis.html

Hope this helps

Kevin

[rammstein]

How's it going today- did you see the doc yesterday?

[johnco]

doc decided I was much too sick, too sensitive to treatment and let me off for a week to recover. 18 lbs lost in a week. starting again Monday. poured 12yds concrete today. wasn't a good idea but I got the job finished at last. I'm starting to eat a little now and then

[johnco]

got some new stuff that makes it a little better. lortab elx and this dandy little spray someone told me about. 20% benzocaine oral anesthetic. makes me scream for a few seconds but then deadens my throat for a while. it's just getting the nerve to make the spray.

[89911]

I've prescribed a formula called a "magic swizzle" or "benadryl swizzle" for patients in acute mouth pain from herpatic stomatitis or apthous ulcers (canker sores). Its one part benadryl, one part viscous lidocaine, and one part Maalox or kaopectate. Most pharmacist know the recipe and it may not even need a prescription. It will help the symptoms buy not the source. Here is some more information if it pertains. Hope you get some help if you can't find anyone to call it in, send my a pm.

http://www.mssm.edu/msjournal/65/05_miy.pdf

[johnco]

thanks. I've got the lidocaine/nystatin/mylanta/benadryl mixture. helps some, but not much

[KFC911]

Originally Posted by rammstein

... And if it took hitting a bong to get your appetite, do it...

I'm sorry you're going through this John, I had no idea. Not being facetious or anything, but might I suggest "brownies/cookies" , etc. for the above reason, and in general for the treatements. Good luck man...

[Palum6o]

johnco, unfortunately there continues to be an unmet need for OM treatment. I'm sure your doctor is doing his best in managing your treatment. The key with OM is that you need to keep your mouth clean in order to keep the bacterial load down as the chemo and rt have destroyed your mucosa (which had previously fought off bacteria). The dead skin in your mouth are the pseudomembrane tissue that forms when there is a bacterial invasion or sore. There have been several studies involving wide spectrum antibiotic swish and spit solutions but none of them seemed to be successful. The old "miracle mouthwash" solutions, baking soda/water and even peroxide with baking soda will most likely be perscribed but as you've experienced not that significant. I'd try to stay away from any alcohol or any smoke as this could exacerbate the cancer, always keep your doctor informed about what you do. I'm surprised though that they haven't offered you more pain management, some patients took Actiq (fentanyl), there's even a newer formula called Fentora, a quick disolving tablet between the cheek and gum. Its hard to give any sort of advice, when your doc is responsible for you. Also look in clinicaltrials.gov to see if there's any clinical study going on for OM pain, I'll look as well and shoot you a PM if I see anything. Your descriptions are horrifying and we can only imagine the suffering you're experiencing. You're on our list of people who we'll pray for... Also, for nutrition, you can always get a peg tube and put down some Boost or some other nutiritional drink. Remember, keep your mouth clean.

[johnco]

once again.. I am hungry. I do have an appetite. my stomach is making all the hungry growling noises an empty stomach makes.. the problem is.. I can not swallow anything. if I could swallow a "brownie/cookie" I could probably swallow normal food also. I'm doing good to get oatmeal, fried egg, pudding, even gatoraid down.. somehow I don't think getting stoned will cure the pain in my throat caused by food scraping past raw flesh. thanks

[KFC911]

Originally Posted by johnco

.... somehow I don't think getting stoned will cure the pain in my throat caused by food scraping past raw flesh. thanks

I didn't realize you couldn't really swallow at all. My suggestion was offered, not for "getting stoned", but it does work for many to induce an appetite and as a relief from the nausea if you have any. That's got to be hell...I wish you the best!

[Palum6o]

getting a peg will help you put food in your stomach (bypass your mouth), most patients have this done prior to the treatment. Ask your doctor about it.

[rammstein]

One more thing that my dad did- when you are seriously zonked out and hallucinating and everything, be SURE to have a trusted companion go with you to the doctor to ask questions and take notes.

Thats gotta be really frustrated to actually be hungry and not able to eat enough- hang in there dude.