Tonsil cancer, 3 years on

FormerMember
FormerMember
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Hi, I m back. 
Husband went through everything in the past three years. 
radiotherapy. Mandibulotomy. Immunotherapy. Chemotherapy. 
About to have sixth and final chemo. 

Side effects are getting worse and last longer (14 days). 
Ulcers in the mouth. Fissures, extreme fatigue, huge difficulty swallowing, difficulty speaking, the usual I suppose

question, if someone knows:

what happens next? A few months break I suppose but then what?

Can one start chemo again? 

thanks

Venice

  • Hi Venice, I don't get on here much these days but I'm so sad to read your poor hubby is having such a tough time of it. I'm still on 

    immunotherapy and so far responding with the last scan showing I'm stable. I haven't come across anyone that has gone through immunotherapy and then onto chemo. How long was he having the immunotherapy for?

    Maybe you could pop into the 'Living with incurable cancer' group to see if anyone could answer your questions?

    Thinking of you both at this difficult  time!

    Fi x

  • Hi Venice. So sorry to see you are both struggling through this awful disease. Is your husband on chemo after immunotherapy? Did the immunotherapy not help or were the two years just up? 
    There are lots of different chemo regimes so maybe another can be tried. Have a proper chat with your oncologist. He/she will put you right. 
    I don’t pray but I’ll do something else for you both. 
    Keep in touch xxx

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Venice sorry you find yourself on here again. Can’t really offer any firm advise apart  from like Dani says talk to your oncologist I know there are different type of chemo that can be tried but your team can advise you. 
    hugs to both of you Hazel 

    We started at a similar time I was diagnosed 29 May 2018. 
     

    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/

  • FormerMember
    FormerMember in reply to little-fi

    Thank you Little Fi. 
    i remember reading you a while ago. So here we all are still....

    husband had 8 immunotherapy sessions From Feb 2020 to November 2020.   It apparently stopped working.

    We go private as we never joined the NHS, being foreigners, no insurance either, which is really our fault.  
    If people had any idea how costly immuno is, they would be hugely grateful to the NHS.

    Chemo was last resort.  
    the idea of “incurable” is painful  

    thanks for the kind email,  much appreciated  

    good luck to all of us  

    Have a good weekend  

    Venice