About to go down the immunotherapy pathway

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My history is multiple melanomas over period of 16 years. The last to be surgically removed (2023) was stage 3b and I was given targeted therapy for 12 months. Latest CT scan flagged a concern which warranted an MRI of my liver; Two areas on my liver have been characterised as metastatic cells. I have no lymph node involvement and no ill-signs. I’m going for my oncology appoint in two days time to discuss diagnosis (prognosis because I’ll ask) and treatment with immunotherapy. Is there anyone who can relate to my scenario?…… what can I expect from the next chapter?……. what questions do I, absolutely, need to ask and be clear about? Has anyone found that, in the event, there was no need to feel as frightened as I’m feeling right now?

cheers, in advance for any helpful feedback x

  • Hi  

    I am one of the community champions on the breast cancer forums. I don’t have melanoma but I noticed your post as it referenced spread to liver without lymph node involvement, and treatment with immunotherapy.

    I have metastatic triple negative breast cancer. It spread to my liver very quickly, possibly before diagnosis, with no lymph node involvement. The only clue was the pathology report on my wide area excision for my primary tumour mentioned vascular invasion. I had no symptoms and it was picked up a few months after my diagnosis when I had a CT scan for another reason. The assumption was that cancer cells had got into by blood stream and seeded a couple of tumours in my liver.  This was in 2022. I was treated with the immunotherapy drug pembrolizumab through 2023 and achieved full remission. I have had no evidence of disease since and am not on any treatment, just regular scan follow ups.

    I would be wary of asking about prognosis. The typical survival with liver mets for my cancer is 9-15 months but if immunotherapy works, it changes the paradigm. No one can tell me I am cured but equally I have a stable metabolic remission from a very aggressive cancer that typically comes back. I feel more confident with each cycle of scan and follow up. Once you have heard a prognosis (assuming they can give you one) you can’t unhear it. It’s like walking around with a use by date on your forehead. I don’t know whether pembrolizumab is the drug on offer for you, although I know it’s used extensively on melanoma. And my experience shows it can work very very well for some people.

    Drugs like pembrolizumab are high risk, high reward treatments. Because of the way they work, they can over activate the immune system and generate a wide range of impacts. I did have kidney, thyroid and lung damage as a result of the treatment, but these were successfully treated or are managed. A small price to pay for saving my life. The key thing is to react very quickly to anything that doesn’t seem right as immediate treatment with high dose steroids seems to be the way to minimise consequences. 

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    I have metastatic Triple Negative Breast Cancer, in remission

  • Thankyou Coddfish for taking time out to give me a reply. I know everyone’s cancer scenario is unique to themselves, but hearing that you had liver involvement prior to the immunotherapy and have been in remission for a couple of years is the kind of positive message I need to remind myself of.
    Since getting the MRI report and, actually getting to discuss it all with the oncology team, I have been good at keeping my thoughts (fears) at bay. But, today, I have too much time on my hands and my thoughts have started to get dark.

    To hear a testimony that immunotherapy can, definitely, halt, reverse or eradicate the advancement of cancer cells in the liver is the kind of reassurance I’m seeking……. I’ve no doubt that this is what the team will tell me, but, I still have two whole days before I speak with them. So, thankyou. 
    I hear your advise about asking about prognosis but I’m just not sure I’ll be able to resist….. I never take heed of “use by dates” anyways….. I always say “let me be the judge of that” as I cover my toast with ancient marmalade, so, likelihood is (at this stage) I’ll think the same about any prognosis they may offer. ……. it might just determine whether I blow everything on one-hell-of-a-holiday for my family or carry on with the ironing! (LOL). Joking aside, I’m a theorist; it’ll be hard not to enquire

    Thanks again…. Onwards and upwards!! xx

  • Looking forward to hearing an update after your appointment! 

    Community Champion badge

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

    I am a Macmillan volunteer.

    I have metastatic Triple Negative Breast Cancer, in remission