mucositis - worried and fed up

Robyn,

At 7 weeks post you should be on the outer limits of painful side effects and should be feeling some relief soon.  Barring Thrush I used magic mouth wash for most tongue, mouth and throat discomfort.  I could swallow great, but drank most of my meals for months until things settled down.

Don’t get discouraged you have hit a rough patch and if your team is keeping a close watch on you I feel you will turn the corner soon.

Matt

What pain control have you got Robyn?

This is important.

It sounds as though you haven't got enough coverage.

Mucositis can be awful. I had Grade 4, with necrotic patches. That's the worst it can get. Some people are unluckier than others. I have heard of some people having just a 'sore mouth' - but I think most of us have it pretty severely.

I can only say what helped me:

• 25 mcg Fentanyl patches
• 60 mg Oramorph per day (3 x 20 mg)
• Paracetamol suspension (or effervescent)
• Difflam mouthwash (diluted to 50% with tap water)
• Nystan for oral thrush (the white spots)
• Sleeping as much as I could
• I could take nothing orally for around 2 months
• I also couldn't speak for 2 months (I used a text-to-speech app on my tablet) to communicate

Do not listen to people who say that getting off the painkillers is awful, etc etc. Usually they are not cancer patients, and they do not understand. The only reason people can find it tricky is when they try to reduce the dose too suddenly. You do need enough pain relief to enable you to sleep. You need sleep to recover.

You will know when it's time to start reducing the Oramorph. You can also reduce the Fentanyl patch to 12.5 mcg. I allowed myself 6 weeks to clear out the Oramorph & Fentanyl (both are Morphine/opiate drugs). I took it down by just a couple of mls a day, and that was fine. I had no side effects or "withdrawal" problems. Almost all people do need opiates to manage the pain, and there's nothing wrong with that.

Remember - if you are on opiates, you WILL need laxatives. (Embarrassing subject). Opiates slow down the way the digestive process works, and people can become very severely constipated. Don't wait until you are constipated. 100% of people are constipated by opiates, so start with something gentle like Movicol, Laxido, or Lactulose, before the problem starts, (because it will LOL).

Robyn - it *WILL* pass. It is bloody dreadful, I know. But it's not forever. You will get better. Your mouth will heal. It just takes a good while. Not like any other illness we've had, even flu, you expect to be over the worst by a 2 or 3 weeks. This does take much longer. But every day you must tell yourself "I WILL GET THROUGH THIS. THE PAIN WILL HEAL".

It's not like anything else we've ever had to fight. But remember - every single day is a battle we have WON. One more step to WINNING THE WAR.

suffering more from thrush, than mucositis?  Just the way you describe your problem, made me instantly think thrush.....and thrush calls for an antifugal.....Nystatin or Diflucan.  So I look up Nilstat.....and it IS Nystatin, but you've decided for some reason to not use the recommended dose....."much less" in fact.  Why?  You probably really need the full dose to get your mouth back in shape.

If the Nilstat isn't working, then ask for Diflucan...it works from the inside out (it's a pill, or you can get it in liquid form to pour down your tube).

p

Phrannie, that's a very good point. Diflucan.

You can buy the "Diflucan Once" - or the cheaper own brand Fluconazole capsule. It's just one capsule. I know it gets rid of thrush "down there", but I did take it a few times for oral thrush and it did seem to help.

I told my GP about this, and he said that if you take it repeatedly, you can build up a tolerance to it, however, if you need help with thrush, he said it's excellent. Just don't keep taking it.

Oral thrush is nasty and painful. Anything that helps is a good idea! x x x x

Difflam mouthwash is given to most/all of us over here, I  believe.

The reason it's so good is twofold:

1. It kills pain. It is a local anaesthetic.

2. It is an NSAID a non-steroidal anti-inflamatory. It reduces inflamation in the same way Ibuprofen does.

So it helps to *feel* better and it helps to *heal*. It is reducing the CAUSE of the pain (ie, the inflamation).

Mucositis is (partly) an inflamatory response to tissue injury. The Difflam helps with this. Difflam is not a 'normal' mouthwash, the sort that cleans/protects teeth. It is FOR pain and tissue injury.

I hope you can get some, because I couldn't have managed without it. You have to dilute it 50/50 with tap water. I used to sit there with a mouthful of it for 10 or 20 minutes at a time. After spitting it out (or rather opening my mouth over the washbasin because I couldn't, and still can't, "spit"), after that, my pain would be much, much less for a good while. Enough time to allow me to get off to sleep. And that was so valuable!

Robyn64 said:

Thanks,

Thanks Estelle, I think I can get hold of this and will give it a try.  Thanks.

Things WILL get better xxxxx

Hondo said:

Hi Robyn

It takes time my friend but it will get better, I been there twice and came back both times. It will not happen overnight it might take weeks or months but you will get better just hang in there, the mucositis problem will in time also get better. Also use your PEG as much as possible until you see a change in healing in your mouth, I live on a PEG and will be on it for the rest of my life. I look at it as being better than being 6feet under, I wish you well in healing.

 

Tim Hondo

It does take time..My treatment ended in March of 2004 and i was on the peg until sept of 2004 ...Mucitis was the cause for my extended use of my peg..water even was difficult to swallow.. 

 7 weeks would of put me out to May of 2004 and i was just going through that long period of time to about Sept of 2004 before i could tolerate it without magic mouth wash..

good luck

Mel