Stage 4 tongue cancer

FormerMember over 5 years ago

12 replies
84 subscribers
5799 views

Hi all

I was diagnosed with stage 4 tongue cancer, metastasis lymph node. ...had all my radiation treatment in Oct/Nov last year....found it a real struggle, couldn't have Chemo as I have Crohns disease, so ended up having a double session of radio every Fri. .....it's 5 months on and my tongue is still really quite sore, not able to eat anything remotely spicy as it kills my tongue/mouth....I also have no saliva still and find it difficult to eat foods, hard to swallow, gets stuck.....I find I choke alot drinking/eating too....are these all 'Normal' things post treatment? ..... Also, to add, I lost a good 3 stone during treatment so my weight is quite low and struggling to put weight on but, around 60% of my hair has now fallen out so having to wear a Chemo scarf....has anyone else had this?

Thanks

Jaz

RadioactiveRaz over 5 years ago in reply to FormerMember

Hi Jazz

Yhe xyimelts are availabkwmi line amazon or mouth ulcer company they are small tablets I chop in half with a big knife just before I fall asleep i pop 1/2 in and put in between my upper gum and cheek it takes a few days getting used to but the concentrates of xylitol which is the stuff sugar free gum is made from slowly dissolves ,I still wake up and ha e sips of water during night butbmost people say like me they do help I now get 8 hours sleep most nights .

Weight will ,come back on maybe ,just in a different way my bingo flaps under arms are now nicely tones up my belly is still flat ,re hair what I did 6 months aftervwaa have a really good cut it was looking like rats tails so off it came 14 month s later it’s grown back thick and can get it in a pony .re saliva it will improve you arevatbyhe moment in the worst place it should get better .

keep in touch Hazel x

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

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

FormerMember over 5 years ago in reply to RadioactiveRaz

Thank you Hazel......you've been a great help....will certainly keep in touch x

Take care

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Stage 4 tongue cancer