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Was diagnosed with stage3 mouth/tonsil cancer on 25th April this year..
All started with a sore throat and earache all tho it came from a virus I picked up in my teens then lay dormant until this year oh dear.
Then came the scans, biopsy etc.
270 hours of intense chemo and 30 sessions of radiotherapy
Chemo was tough but nothing compared to the radiotherapy, radio is brutal and extremely painful during and after.
I cant spk for anyone else but the
Long term side effects for me from radio, extremely thick mucous, deaf in left ear and horrendous dry mouth
Have rig/feeder fitted bec I cant eat properly and may never as my saliva glands are shot to pieces.
Anyone on here feel like a chat then I'm available at all times.
Enough about me, so if you fancy a chat or feeling down give me an email.
Best regards to everyone
Andy hello my friend.
Few things yes I agree that the RT is more brutal for us guys; chemo is the "thing" that gets the headlines and when I heard RT was the main treatment I was relieved, how wrong was I?
Your dry mouth, fatigue and hearing will get better, though it may take some time. Keep strong.
What is a Community Champion?
Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
Good to hear your story.
My husband is starting his radiotherapy and chemo this week. He hasn’t got his taste back yet from having a tongue mucosectomy.
He has tonsil cancer with secondaries in his lymph nodes in the neck.
He had his PEG feeding tube fitted last Wednesday (he doesn’t like it!).
We’re prepares for a fairly grim Christmas as I’m about to start radiotherapy for breast cancer too.
Onwards and upwards I guess.
Would be great to keep in touch and compare experience and expectations.
Sharon and Ken
Sharon and Ken xx
You never know how strong you are until being strong is the only choice you have.
Hi Andy I was diagnosed with a T4 H-PAP SCC April 23rd and finished my Chemo-Radiation treatment 2nd August. I know what you're going through. You will feel better but it is a very long and slow road which we all travel at a different pace. My RIG Came out last week and for me it was a huge positive psychological milestone.
For Dry mouth maybe try OraCoat Xylimelts which you can get from growingsmiles.co.uk. You stick one or two of these tablets to your gum and they then gradually melt over the next couple of hours giving you much needed lube to the mouth especially at night. These have really helped me a lot. Allso try bioxtra Gell Mouthspray for a quick boost of wetness / lubrication in the mouth.
On Fatigue, the advise I was given was not to plan too much or too far in advance as you may not feel up to those plans on the day and you'll end up disappointing yourself and that's not good for your well-being.
Lastly try and stay positive. Do what suits you and makes you and yours happy. As my rather nutty as a fruit cake ENT Surgeon said to me when he delivered the news '...It's life changing'. Accepting that is hard but the emphasis is on life changing and not the alternative.
All the very best
Hi Andy this is Hazel aka RadioactiveRaz I am 15 month post radiotherapy for tonsil cancer with affected lymph nodes .Still suffering dry mouth and having acupuncture tomtry and kick start the saliva glands into action ,in my case I do feel like it’s helping have a blog detailing my experiences,I am now living my life just return from a long break in Spain where I cycled overboard 850 km this time last year never thiught I would be doing that again.
Agree the chemo is nothing compared ton radiotherapy I had 35 factions 70 gy. I too was h p v 16+ Virus
If you want to ask anything just popmon message I’d send a friend request if u can do this anyone can
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz,wordpress.com.
i give a honest account of my experiences with tonsil cancer
Hang on in there
Things WILL get better. The pain will go, some saliva will return and you will be able to enjoy your food again though life will never be quite the same.
The best thing for fatigue is to try to get some exercise....sounds crazy but it does work
I'm 10 months on after T2/N0/M0 base of tongue cancer and six weeks radio (no Chemo) and life is returning to near normal
Have a read of the blog...tried to inject a little humour into a desperate situation.
Good luck...you'll get there
Hi Sharon and Ken
o ph bug what can I say at least hopefully you are at the same hospital
I am 15 month post radiotherapy for tonsil cancer with affected lymph node s any questions pop onto forum and one if us will always get back to you
I have a blog which details my experiences justbremember we are all different nit all of us go through the same but it may help.
Hi sharon n Ken.
So sorry to hear you both have cancer all tho different types.
I can't advise on breast cancer but can advise on Ken's.
I'm 3half months post treatment. and have several horrendous side effects from radio still.
I'll tell u now radio is brutal, sorry to tell u this but I have to be honest.
If your hubby wants to chat for advice then I'm more than happy to oblige.
All the best for future and you both take cake.
Keep in touch
I got severe tinnitus and hyperacusis after my treatments. I don't think oncologists give an accurate description of life after head and neck cancer. I don't think I would've treated it and I'm in the lucky category. Have you tried gargling with seltzer water?
Hi what treatment did you have.
What stage was the cancer n how long post treatment are you.
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