Immunotherapy help please

Hi

This is quite long but I will try keep it as short as possible. My dad got cancer on his lip which they removed but had spread, he then has lymph nodes removed but it had spread again to his liver. 
His only option was immunotherapy. He has had 4 sessions and then had his scan. The scan has shown it has spread again to his lungs and bones. (It was around 5 weeks before he started treatment though so this could have happens before et he immunotherapy therapy I'm not sure).

On the phone with the results he was told he has 5 months to live but they will carry on with 3 more treatments of immunotherapy anyway but not optimistic. 
My dad decided to ring them back a week later (this was yesterday) and ask for them to cancel the treatment and to sign papers so he could get his life insurance early to make sure my mom is ok. They said they would. 
10 minutes later he gets a call to ask why his not having the treatment. He explained it's pointless so he doesn't want to be messed with. He was then told (by the same person who rang him with the results a week earlier and giving him 5 months to live) that over 50% of people in his position the treatment works the 2nd time! 
This has already been a huge rollercoaster and as much as this is good news and give us hope I can't believe it. Is this true? Why on earth wouldn't they have said that before. We were told from the start it was less than 20% chance it would work but now it's over 50% after it's spread so much. 
I want it to work more than anything! But we also want the truth as we are all in shock and being told so many different things is making us all ill. 
Has anyone had a similar experience and been ok? Or is this so my dad can get the numbers up in the research or be a Guinea pig. 
I sound harsh and I don't mean to be but this is destroying me not knowing what the hell is going on. Same for my mom and dad. It's horrific. 
 

Any advice would be great thank you 

  • Hello Needanswers1

    I'm so sorry to hear about your Dad's diagnosis and the conflicting information that he's been given by the clinical team. It's perfectly understandable that he, your Mum, and you are all feeling so very worried and conflicted about things. 

    If your Dad is feeling unsure about the best way forwards then he could consider asking for a second opinion. Hopefully this would help reassure him that whatever decision he makes is the right choice for him. We have some information on our website about how you get a second opinion

    Alternatively, if you'd like to chat with one of our team of nurses for some advice and support you're welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. I'm sure they will be happy to help with any information that may be relevant. 

    Whatever choice your Dad makes I hope that you're all well supported. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi, sorry to read of the experience you've been having. 
    I was diagnosed with advanced kidney cancer and started immunotherapy in Jan 2022.  Immunotherapy is such a new treatment that the overall survival and other prognosis statistics just aren't available yet.  On diagnosis, I was given 5 years.  I've had my first 3 months of immunotherapy and I'm on my oncologist's "top responder" list and he regards the cancer as "under control".   Now he is saying I am at a greater risk of something other than the cancer getting me in the end.   
    The treatment I am on (ipilimumab/nivolumab) was effective for 40% statistically.  But it is a feature of immunotherapy that it can take longer (more sessions) to get a response and that once one treatment stops working or isn't effective then there are other immunotherapy treatments to try. 

    Personally I wouldn't be making any critical decisions based on how long a doctor thinks something will take to complete its course.  They are trying to manage expectations.  Maybe they got the tone and balance wrong.    Loads of people now being treated with immunotherapy are well past their sell-by date.  Loads of them immunotherapy didn't exist when they were diagnosed with cancer.   Immunotherapy is more easily tolerated than chemo.  I'd give it a try.