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Has anyone had immunotherapy for cancer of unknown primary

Bdebz79
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Hello, 

 

 

 

In the past few weeks my mum found out that she has secondary cancer in her liver and lungs. A biopsy of her liver has not been successful in identifying a primary cancer. She has been informed by a consultant that immunotherapy is not an option for her as it is not offered in the UK to anyone with cancer of the unknown primary. Online however it appears that immunotherapy is offered for this. Has anyone ever been offered or is receiving immunotherapy where the primary is unknown. I feel like we want to fight this but there aren't many/any options other than 6 chemo treatments. 

 

Any advice or comments welcome. Many thanks.

  • Welcome to Cancer Chat, Bdebz79.

    I'm sorry to read that your mum was diagnosed with cancer.

    Sadly I'm not able to tell you whether immunotherapy can be offered when the primary cancer is unknown but you might want to reach out to our team of nurses and ask these questions. They're available Monday - Friday between 9a.m - 5p.m on this freephone 0808 800 4040.

    Also, there is a page from our website with general information on immunotherapy if you feel like having a read.

    I hope this helps a little.

    Best wishes to you and your mum,

    Renata, Cancer Chat Moderator

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    Hi.

    I'm not a doctor or nurse but am having immunotherapy so wanted to try to answer.

    My tumor had high PDL1 and immunotherapy had shown amazing results towards this, it was explained to me that was the reason it was recommended. I'm guessing if they can't find the primary they can't establish it's genetic make up to know if immunotherapy will target it so this might be the reason for the refusal however what is very unclear is why can't they find the primary?

    I would have thought a FULL body scan would reveal it?

    Maybe you should ask what scans or tests she's had to attempt to find the primary and if there's been none, suggest they order some.

    Take care

    Xx

  • Offline in reply to Moderator Renata

    Thank you for your reply. Contacted them tonight and they gave me some good advice. Thanks again.

     

     

  • Offline in reply to hopeful65

    Thank you so much for replying. We are getting a second opinion and will confirm whether they definitely did a full body scan.

    Thanks again xx

  • Offline in reply to Bdebz79

    Just a thought - does your mum have moles? If so, has she noticed a mole has disappeared? Sometimes the primary can't be found on a melanoma patient because the mole has regressed and disappeared. The melanoma is diagnosed because it's spread to a node or an organ but they will never know where the primary mole was. Good luck and I hope you find an answer,

    Angie (Stage 3 melanoma patient since 2009)

  • Offline in reply to AngieT

    Yes she has a lot. She has had skin cancer twice in the past (treated both times) but the consultant said that this could not be the primary but would not explain why. 

     

    All of this seems a little irrelevant now as she has deteriorated really quickly in the past 24 hours and the 3-6 month timeline that we were given 3 weeks ago has now changed. They are saying they believe she now has 1 week. Absolutely devastated and heartbroken.

  • Offline in reply to Bdebz79

    I'm so sorry to hear that. I can only send you and your mum love at this distressing time.

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