quote:

On a different note - I read about a new product called Sensitrol Bud, which are cotton buds containing Potassium Oxalate.They are meant for people whose teeth give them pain when eating hot or cold food. They say that they are a powerful de-sensitiser that immediately block pain.
I wondered if they might be useful on mouth sores - does anyone know?

meant for application to sensitive teeth (dentine hypersensitivity). potassium salts are used in toothpastes for sensitive teeth. i think it is unlikely that it will be helpful for mouth ulcers.

my father found it helpful to bring along his fake spit and spray his mouth right before mask had to go on

Now 16 treatments in and got through the first 2 weeks OK like most people.Now everything is kicking in.Terrible ulcers in throat which means I can't eat as swallowing is so painful, so I'm now on the milkshakes. I got a tablet stuck in my throat a couple of days ago and it really frightened me as I thought My throat was closing up.Doc said it was the thick sticky mucus on top of the ulcers that caused it to stick. So I've got liqid Paracetamol now and Oralmorph at night.
My neck and face is also starting to burn now.(I'm using Radiance Gel) I can't believe that I'm not even half way and it's so bad already.
I know the burnt face/neck is going to get worse, but what else can I expect?

Cheers
Sandy

Firstly Sandy Paracetamol is not a strong enough painkiller for the side effects of radiotherapy,secondly,no its not unusual to have these side effects so quickly,and yes they will get worse.

Thrush is a very common and very painful complication of the mouth ulcers so get that checked out as it is very treatable,go to your chemist and ask about biotene dry mouth products ,they do a range of toothpaste,gels and sprays to help with the mucous and dry mouth,which can make swallowing difficult.Protect you skin with lashings of aqueos cream after treatment,but make sure you don't put any products on your skin before treatment as it can make the burning worse.Also don't use any perfumed products to wash your skin and hair.

Hydration and nutrition are the key to successfully getting the through this ordeal alongside adequate pain relief which can mean different painkillers for different types of pain.If you are finding eating a problem and are losing a lot of weight then you need supplements that you can drink or at worst have a feeding tube fitted.

This is hard and gets harder especially after the treatment has finished and you expect to start feeling better.The radotherapy keeps on working for about two weeks after you are done and this could be the time you will feel worse before you get better.Its not unusual to sleep up to 18 hours a day and have a real problem with feeling cold and tetchy but the body needs rest and time to heal.

I think if you can get good pain relief you will feel better Sandy so start so get complaining until you get what you need.

Hi Sandy
Oh, you poor thing. This is the reality of r/t.
Liz has given you the cold, hard facts but it's best to know this kind of stuff. Don't suffer any more than is unavoidable. Here we have nurses at hand in the r/t dept and they dish out whatever is needed to get patient's through ~ from cream for the area of treatment to various pain relief, mouth care products. Be sure to let the staff know what you are experiencing.
Do you have someone to care for you, Sandy? You will soon be too tired to get out of your own way and you need to have someone at hand who can be sure to keep on top of your medication regime and also get nourishment into you. Has anyone mentioned a PEG? This should be sorted before you get too advanced in your treatment so that you are able to take nourishment and pain relief when your throat becomes too dreadful and swallowing too difficult.
Hang in there, Sandy. Be kind to yourself and rest as your body dictates. There is a war going on inside and while you are sleeping there is a full-on battle taking place (little wonder you get so tired!).
We're all here for you, sending positive vibes your way.
Take care
Deborah

Hi Sandy,
Sorry to hear you're having such a rough time, but I, and many more of us on this site know exactly what you are going through. I just thought I would tell you that when I had my chemo/radio therapy, the rt nurses were brilliant in trying to help control the pain. I too had oramorph, and combining this with soluable sophadol really did help with the pain, as well as helping me to sleep for long periods of time. My rt nurse also gave me a mouth rinse made up of lemon mucilage and soluable aspirin. This was brilliant for temporary deadening of the pain - I used to say it gave me about 15 minutes talk time! Also, Difflam Oral Rinse was a great help too and freshened up the mouth. I hope this little bit of info may help in some way. Keep positive and you'll be through it before you know it. Take care.
Dian x

Liz
Thank you so much for your honest reply. Also to Deborah and Dian for support. I don't know what I would have done 15 years ago before Forums were around.This forum really helps me get through this.

The hospital has given me the Biotene mouthwash +toothpaste and I have been using that.I've tried Difflam, but it made my mouth burn.
I'm hoping I won't need a PEG as I can swallow the milkshakes ok, so at least I can survive on them.

I saw the Consultant today and she Said if I take the Paracetamol on a regular basis it will be more effective.I can take the Oramorph too whenever I need it and if thats not enough they will give me a patch.I think it's partly my fault really for not wanting to take Morphine as the thought of it sounds frightening as my dad was on it for the last few weeks of his life when he died of Lung cancer.
I'm not too bad during the day, but evenings, the pain gets worse.This is when I've been taking the Oramorph.
I'm lucky that my husband works from home and he has put his business on the backburner for a few months so that he can come to the hospital with me and look after me at home.
I know I'm luckier than a lot of people as I am only having one side done and so far my skin and mouth on the other side feel normal.
Thanks so much for all your support/advice - it is really appreciated.

Cheers
Sandy

Hi Sandy
When you know powerful stuff like morphine is what is going to keep a lid on your pain, paracetamol seems like the poor cousin and it seems silly to consider taking something that you'd take for the most simplest ailment. Trevor tended to rely on the stronger drugs, thinking that was enough stuff to be putting into his system and as a result had more pain than necessary.
Truth is, paracetamol is a great adjunct and helps carry on the effect of the stronger drugs so please keep your regime of pain relief. Don't wait til you have pain, to treat it. You need to maintain a level in your system to keep as comfortable as possible.
So pleased your husband is able to be with you.
Positive vibes heading your way.
Deborah

Hi Sandy

My daughter Freya, who aged just 5 years, endured 30 rt treatments 9 months ago to her mouth. Freya was prescribed oramorph and liquid paracetamol as standard. The first 2 or 3 weeks were tolerable, Freya just needing the paracetamol "mist" but things got gradually worse to the almost unbearable stage - even with the oramorph. Freya did, in the end, manage without the feeding tube despite all of the pain and combined chemo treatments and I think a product called "Gelclair" really helped. We were so desperate for her and begged for more help to ease the pain from all of the sores in her mouth. The Christie nurses prescribed this Gelclair, a concentrated oral gel, new to the market we were told, prescribed for those suffering with mouth lesions from oral surgery, rt, chemo, trauma, disease etc. It forms a protective barrier around the mouth and combined with oramorph and paracetamol, I believe helped to get her through the traumas of rt and chemo. I used a couple of left over sachets recently when I had a tongue biopsy and I found it really helpful with the stitches and pain and swelling, obviously nothing like what you go through with rt but it may be something you could enquire about and help get some extra relief.

Freya has her next MRI on Friday, another milestone on this journey. I am so anxious as this appointment draws closer. I love her so much.

I hope this may help you. Good luck and take care, Keren x

Hi Keren

When I read what Freya has gone through at 5 years old, it puts me to shame. What an incredibly brave courageous little girl!

I will ask about the Gelclair.It sounds like just what I need.Thanks for the tip.
I think also one of the reasons I've been put off using more Oramorph, is that it makes my heart feel "funny" as though it's beating slowly and strongly.

I will be thinking of you and Freya tomorrow and keeping everything crossed that it will be fine.Please give her an extra hug from me and let me know how it goes.
Cheers
Sandy xx

See this post about:Mucositis/Gelclair/MuGard

Hi Sandy. Not much I can add to what has already been said but definately keep taking all the painkilling meds that they can give you. It's not ideal but anything to help you get through your RT is a good thing. At least your getting to or at the halfway stage. Hagg.

Thanks Hagg
I got some Gelclair sachets and to be honest they didn't really help.The nurse said some people find them great whilst they don't have much effect on others. I still find MuGuard very good, so I'm trying to make an effort to take it more often.It's difficult to take it 6 times a day when you can't drink for an hour afterwards!
I've now upped the Oramorph to twice a day and don't really feel I need more at the moment.Besides I love football and I don't really want to sleep through all the matches on TV!!
Cheers
Sandy

I found that after a while that no matter what pain killers I took I never felt much of the effect apart from less pain, I didn't really feel zonked out. I was necking them left, right and centre amd much more than I should have. Not that that's a good thing.
Now I rarely take painkillers at all. I had an operation 3 weeks ago and took two paracetamol when I came round from the op and haven't taken any since. Rather put up with the pain. That's full circle I guess.
Hang in there.
Hagg.

well done sandy for getting this far without peg feed, only thing i can add to whats already said is when i came near the end of my treatment the n urse in hospital used to pack around my neck with E45 cream which i hated every evening after rt, at that stage i was too ill to complain but it worked cause i never broke out on the outside, while a lot of fellow patients did, also i had the same feelings about morphine for similer reason,s but i took it on advice but i had very little pain' iwas on other meds so much that they brought other problems, whatever you are going through now always remember ,YOU ARE GETTING BETTER. jimmy.