Hi, 6 weeks ago I was diagnosed with tonsil cancer, I am receiving weekly chemotherapy and radiotherapy every day for 6 weeks. I am on day 10, I am finding it hard to swallow and have a really dry mouth. Please can anyone give me any tips to deal with this stage?
many thanks
Hi welcome to our small community group sorry you’ve found yourself here but we’re a friendly bunch I am 3 years post radiotherapy for tonsil cancer with several affected lymph nodes. Dry mouth the billion dollar question sipping water is about all you can do at this stage. Keep on top of oral hygiene if you have a peg use it if n g tube use that. You need to be aiming for 2- 3 litres of water by any means possible. Hard I know I had n g tube fitted week 3 it was a lifesaver.bioxtra mouth wash can help. Do you have caphosol prescribed? That can helo. I also bought a humidifier for bedroom from Amazon I found it helped at night. I have a blog detailed below you May find some tips and links that may help. There are saliva sprays as orthsna you could try they didn’t work for me. There’s also xyimelts which yiu but I still use at night but it maybe too early in treatment for you but definitely worth trying later.
good luck Ask any questions one of us will always try to help.
If you’re struggling with food you may need to high calorie food drinks again peg tube or orally.
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Thank you, able to slip water. They have gave me some fake saliva. I think the feedback tube will be soon. I am losing weight quickly, I will have a look at you blog. This diagnosis knocked me and my family, I still feel like I am living someone else’s life. Like I’m just watching it happen around me
xx
Hi no problem it’s a surreal existence at times. But you’ll get there we all do. Like I said I had n g tube fitted towards end of week 3 all my feeding medication and water went through it. We find we have to be pro active in our treatment. One tip make sure on a Friday you’ve enough medication as you can bet it’s always the weekend when things ramp up. To be honest the fake saliva did most of us last a few minutes. You can try xyimelts you pop in and they stick to your gums I still use 1/2 of one every night. I buy them from Amazon or other online retailers.
If it helps we’re on holiday in Spain living life tk the max we’re on holiday today I ride my bike 36 km and can eat most things apart from spicy.
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi and welcome. End of week two is when it starts hitting you. Your trajectory is normal. Not much to add to Hazel’s advice Except to suggest that you make sure you talk to your radiographers every day about your side effects. They are your first port of call and best placed to liaise with your support team. Don’t be brave. They can only help if you are honest. There are lots of things to ameliorate your pain and discomfort. I had an NG tube for nine weeks. It saved my life. You heal better with proper nutrition. I finished my RT just after my 68th birthday. It’s hard but if I can do it so can you. Remember tonsil cancer is eminently curable
Best wishes and keep in touch
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
If you’re able to chew get some sugar free chewing gum it’s the very best saliva inducer I’ve ever found. I keep tubs of Extra gum in the house, car, garage, at work etc and use it all the time. Not only does it help produce saliva but it’s great exercise for your jaws and helps keep your teeth clean - both really important during and after radiotherapy.
Well done for reaching Day 10. You’re nearly half way through! Loads of us in here have been through the same, have lived to tell the tale and are cheering you on!
I have found the Xylimelts really helpful for the night. I am on day 19 of treatment. Each day different and tiredness increasing. Last chemo next week. Big milestone. You’ll be there very soon.
Not been on before but my cancer was in the nasal cavity and was high grade and without treatment would have spread!
I finished my treatment last Friday, which was 30 RT and 2 Chemo over a 6 week period. It’s tough but you get through it because you really have no choice. I’m now relying totally on my PEG for feeding but managed to eat into week three.
I really wanted to endorse the benefit of sugar free gum as it’s certainly helped me and the dry mouth. Most importantly it enabled me to keep going with my swallowing exercises, which are an important part of the overall process.
The worse time for dry mouth is during the night and my team provided me with bioextra gel and saliveze spray both of which helps and allows for 2 or 3 hours sleep before replenishing. I’d say the gel is the most effective and easy to apply through the night.
I’m naturally pleased and a little proud that I’ve finished this brutal but essential treatment and as the RT continues to work for a couple of weeks post treatment I’m still very much in the suffering mode but hopefully in a week or so I’ll see a little light at the end of this long and challenging tunnel!
Oh what I’d give to feel hungry and actually have the ability to eat real food!
Guess it’ll be a while but I’m determined to achieve it! In a few weeks I’ve gone from being an absolute foody to looking like an anorexic beetroot!
Hi BRH and welcome. You’ve done the hard bit and you sound remarkably upbeat. Stick with us and join in.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I’m with you there, I miss eating food going out for meals was a big part of my life.
hopefully by Christmas we both will be able to taste and swallow.
Thank you for your support
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