Pseudoprogression with Immunotherapy

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Hi all,

Hope everyone is managing to keep warm during this bitterly cold weather. I had a lovely long walk in the woods with my dogs this morning- love it when it’s so crunchy underfoot.

So, I had my review today with my Oncologist. Now been on Pembro with Levitinib for 9 weeks, reducing Lev by half due to side effects, after 6 weeks. After 6 weeks my cancer markers had decreased by 1,000 so was disappointed today to hear they had risen to 5,000. A jump of 4K. I am feeling better in myself though - fewer side effects and pain I had before treatment has gone. 

Doc has advised not getting hung up on numbers - talked of “pseudo-progression”, which I’ve just been researching so better understand it. Apparently, it’s a phenomenon not uncommon in these new targeted treatments. It looks as if tumours are growing but it’s actually immune cells that are surrounding the tumour and making them look bigger. Sometimes apparently they can make a previously teeny tumour appear on scan that wasn’t visible before.

I understand the science but it’s still very worrying. My main hope is that I do feel ok - certainly no worse and quite a bit better overall. Anyone else had this experience or know of it? Oh my, there’s nothing straightforward at all with this flipping cancer business, is there? 

  • Hi Hilary, I was told that, but they have kept me on it, because its keeping me stable,  my oncologist didn't want to give me chemo as I have a heart  problem and it would affect my heart. I have a break from Treatment ruffle every 3 months. There are a few othere on here I think. Yes I'm on Nivolumb xx

    Moi

  • Hi Moi 

    my chemo didn’t work and the disease spread so I’m hoping to be kept on the immunotherapy. I’ll let you know Wednesday.

    thank you Hilary 

  • Hi Hilary, I hope all goes well for you Wednesday,  sending hugs xx

    Moi