Immunotherapy / keytruda

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Hi

I have neck cancer, which spread to two nodes in chest and then ribs. I had two rounds of cisplatin and 5fu and cetux, where I had such awful side effects which resulted me in wheelchair and housebound except for hospital appointments. My team stopped and only continued with the cetux (targeted therapy) my scan showed that my cancer has shrunk but also grown in the neck and ribs but they cannot see it in the nodes anymore. I also have blood clot in lung. I am due to start immunotherapy on 6/11/26 and just wanted to know if anyone else has had this for neck or rib cancer. My oncologist told me that if it doesn't work then I will be down to clinical trials....which makes me wonder. I'm incurable so know they are only looking to prolong life but on other sites I read about miracles. Thank you for reading x

  • Hi  

    So sorry to read your bad news. 

    We have a few members here who are on IT or caring for IT spouses so hopefully somebody should be along soon.Meanwhile there was a thread about Pembro just yesterday https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/314024/immunotherapy

    I have a forum friend who is three years clear of a two year course so there are some good results.

    Dani 

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

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

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  • Thank you Dani, appreciate your reply x

  • Hi  to hear your news. As Dani says we have a friend who is over 3 years clear since his 2 year  course. 
    This is a link. To a webinar explaining how immunotherapy works by Prof Kevin Harrington at the Royal Marsden hospital.  

    https://youtu.be/nR8tIUEvRXs?si=Hp2BApcB3ImVnIX-

    Hope it helps 

    Hazel 

    Hazel aka RadioactiveRaz 35 radiotherapy and 2 chemo  3 rd cancelled. HPV tonsil cancer 7 lymph nodes. 8 years post treatment living a great life. 
    No questions too daft to ask. 

    I’m also an ambassador for https://oraclehnc.org.uk/
    A leading head and neck cancer charity. 

    This is a link to a series of webinars on head and neck cancers. There will be updates as more are added.
  • Hi Hazel, thank you so much. I hope you are doing well x

  • Hi I’m very well thank you. I’m currently over in Spain riding my bike and living a good life. 

    Hope your planned treatment goes well

    hugs Hazel x

    Hazel aka RadioactiveRaz 35 radiotherapy and 2 chemo  3 rd cancelled. HPV tonsil cancer 7 lymph nodes. 8 years post treatment living a great life. 
    No questions too daft to ask. 

    I’m also an ambassador for https://oraclehnc.org.uk/
    A leading head and neck cancer charity. 

    This is a link to a series of webinars on head and neck cancers. There will be updates as more are added.
  • Hi

    My husband is having keytruda / pembrolizumab for cancer in a lymph node in the neck which is too close to the carotid for surgery. This is after surgery for hypopharyngeal cancer last year, and surgery plus radiotherapy for tongue cancer eleven years ago. He can't have any more radiotherapy, but we think he would be offered chemo if the immunotherapy does not help. He is also classed as incurable. 

    He's had his first review after three rounds of immunotherapy, and the tumour has neither grown significantly nor shrunk. The team will consider treatment successful if the tumour shrinks, but say that 'not growing significantly' is promising. 

    His immune system is definitely reacting as he has developed colitis which has to be treated with steroids. Annoyingly this also means he has to miss a round of immunotherapy in order to try to get the colitis fully under control. So it is a positive that his immune system has clearly been stimulated, but a negative that it has decided to attack his own body. Hopefully it will also have a go at the tumour! 

    There is clearly a lot they don't understand yet about this treatment, but the consultant has one patient who is going strong five years after starting immunotherapy, also with an 'incurable' diagnosis. So yes, miracles or near-miracles can happen, but they are unpredictable. 

    Wishing you all the very best for your own treatment  , do keep us updated.

    • Wow, sounds like your hubby has been through it. I read that it can take several months for the treatment to start shrinking, and am worried as both my areas are growing. My son had colitis so I know how awful that can be, I can only hope and pray that I don't get that. My chemo experience was so horrific I am hoping that immunotherapy might be gentler. Five years is good, I am learning that they can't accurately predict timescales. I wish you and your hubby well and look forward to hearing your updates. Xx