oral mucositis

[Noah930]

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.

[livi]

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.

[johnco]

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.

[livi]

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.

[HardDrive]

This is bull*****.

Johnco, what city are you in?

[livi]

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.

[johnco]

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

[Rikao4]

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

[johnco]

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

[Rikao4]

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

[RickM]

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.

[Tobra]

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?

[johnco]

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

[johnco]

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.

[scottmandue]

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.

[azasadny]

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

[john70t]

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

[bivenator]

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

[johnco]

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

[Tobra]

Originally Posted by john70t

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

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