Done RT finished june23 cancer still there move on to immunotherapy started jan24

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started on my journey back in April 23 SCC base of tongue had 11 teeth removed plus 35 appointments with a RT machine but the cancer remains was told no chemotherapy for me as I've had 2 heart attacks so now started on immunotherapy my question is my mouth is so sore my tongue I can only describe as a slug that someone has put salt on ,not eaten food since nov23 everything is now peg fed and I'm unable to speak question is once immunotherapy has stop will my mouth come back to working a bit at least so I can speak I'm only 55 

  • Hi Paul. Can you get help from your SALT and oncologist? RT has damaged your salivary glands badly and you need something to moisten your mouth… a saliva replacement if some kind. What have you been offered so far? 
    Im not sure immunotherapy will have much if an effect in your salivary function. Please talk to your team. Get some proper answers from them and don’t leave till you understand exactly. 
    It seems such a terribly long time to have no intervention from them. 


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

    I wrote a blog about my cancer. just click on the link below 

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

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  • Thanks for your reply going to see if I can see anyone for my team ....noone seems to want to know me since they handed me over to the hospice my care plan has changed to a dying plan and noone can tell be why 

  • Hi Paul am sorry to hear this. If you’ve any swallow at all theres sprays like Salvix that acts as a salvia substitute but if you can’t swallow that’s no use. I’m angry for you that no one is helping are you in the U.K. ? If you are you should have a designated cancer nurse or Macmillian nurse I would try them as well as oncologist.

    hope you get some respite 


    Hazel aka RadioactiveRaz 

    My blog is  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help