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Me again. I start my radiochemo Monday and all peg and stuff in place. I'm a bit paranoid about the above. I know difflan can be used and I've used gelclair, which was effective. Is anyone aware of any similar products which can help the above and help continue to eat normally? I don't mind buying them personally if not available on nhs.
Hope all makes sense
diflam and gelclair are good in the early stages, but stopped working for me fairly quickly. If you have a reasonable tolerance for pain, then you might be ok with the mouth ulcers. It was the mucus that stopped me from being able to eat eventually. It clogged up the back of my throat, so every time I’d swallow anything, I’d choke on that.
Further down the line, using oramorph as a mouth rinse and then swallowing it (5ml mixed with about 5-10ml of skimmed milk) I found was the most effective local pain relief in the end. Your nurse can prescribe this. Make sure to stay on top of laxatives as soon as you start with any type of morphine. That’s another problem you want to avoid!
Carbosistine (or however you spell it) helped getting up the mucus as it becomes very dry, stringy and sticky. It doesn’t feel like it does anything at first as it takes a while to work.
Best of luck, the next six weeks will flyby :)
I was able to eat normally for the first three or four weeks, although the taste buds gave about 10 days in which made eating by mouth a less pleasurable experience. I began to rely on my PEG in week four and have only stopped using completely about two weeks ago, 12 weeks post treatment. It was a life saver as there were weeks I couldn’t even pass a sip of water. Make sure you take enough fortycips as I was a bit tentative with the peg and only had 4-5 fortycips per day but actually needed at least 8 to maintain my weight so ended up losing 2.5st.
When I started to eat again my biggest issue were the ulcers especially a large 2 pence sized one on the back of my throat. The registrar eventually prescribed a Licocaine spray which I used with a little nozzle targeted on the ulcer. The spray brought tears to my eyes but it had the same effect as a dentists anaesthetic and I could at least eat soft stuff and thus reduce reliance on the PEG. .
We are all difference but hope some this helps and I do wish you the best of luck.
Very grateful for the response and sharing your experience. As you say we're all different, bit shared experiences certainly help. My oncologist said quite a few men were reluctant to use their peg. I've had mine fitted and I will bloody well use it if required.
Wife did mention the lidocaine so I'll request that where the gelclair and difflan spray lose their effect.
Very grateful for your response and we'll wishes.
Hello Alan, please do use the peg if eating becomes a problem, they are easy to use and dont give any hassle. Hopefully, you will not suffer any bad side affects from the radio or chemo, i coped quite well with them both. Good luck with the treatment , take care .
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Hi Alan, you have had some good advice on this, so I will wish you good luck for the next 6 weeks, which will pass quickly and you will be on the road to recovery before you know it. As for your PEG don't hesitate to use it, my RIG was a lifesaver which I was reliant on for about 10 weeks. All the very best to you.
Totally normal to be paranoid about mucositis, because you know that its what will stop you eating and drinking or give you a lot of pain, so sensible to seek advice. Some manage without pain relief at all (apparently) and some eat pretty well throughout, so dwell on that too.
I found it was important to try and maintain some control as mostly the symptoms are beyond our control. So I was obsessive about oral hygiene as this is supposed to be a factor in mucositis - I had a really clean mouth, rinsing food off after every meal, cleaning between the teeth and spending time brushing and flossing. I didn’t get any mucositis for 6 weeks of 7 (although when I did it was bad!) as far as mouthwashes go - I really wish there was a consensus and there isn’t. I was given Caphosol to use which I thought was great, but now my hospital has stopped recommending it as they say there is no evidence it is helpful from the scientific articles and its expensive. They have a point as there is no convincing study to show a beneficial effect. So now they recommend salt water - cheap for them anyway!
So do what you can to try to feel in control - keep an eye on your food intake - have a target for protein and calorie intake each day ( get this from your dietician or work it out yourself, there’s a formula). Make sure you follow all their instructions, rest, exercise, tell the team about anything that arises. You can’t know how your body will react to the treatment, as we are all different, but don’t suffer pain in silence and don’t be surprised at anything weird that happens!
I wish you all the best - its great for you to be actually getting on with treatment now, and knowing that this will be destroying the cancer cells everyday and moving towards you being cancer free.
Many thanks Ray xxx
Thanks Hilary. Thanks ALL for your amazing responses and we'll wishes. So helpful
Hi i used manuka honey during and after my treatment I felt it took the sting out the blisters and helped with the healing, it doesn't work for everyone but may be worth a try or bearing jn mind.
Keep strong keep positive and you will do it
I will add the manuka honey to the list. Many thanks for your kind comments.
Jad my first rt with chemo yesterday. Second rt tomore x
hope week one has gone ok onkyn5 to go hang in there. I was prescribed an oral suspension lidocaine it helped in the early days plus constant cleaning if teeth after food helps against mucus watch out for oral thrush as well white patches in tongue or cheeks get nurses or radiotherapy team to check as that can have a massive impact in eating if nit treated
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions. Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can
Thanks for your reply. First week has gone well thank you. Cisplatin made me feel icky but haven't been. Rt has been fine to date. Weekend off now.
I'll keep in mind the lidocaine. I'm constantly keeping my mouth clean where possible. All this is ful time really.
Thank you for your well wishes.
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