Ipi / Nivo
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Ipi / Nivo

› Forums › General Melanoma Community › Ipi / Nivo

  • Post
    • May 25, 2018 at 7:23 pm
    MarkR
    Participant

    Hi

    Im New here but have spent a lot of time browsing the forum for information and inspiration.  My history is a 1.2mm MM diagnosed on my arm in 2005 aged 23 and SLNB that showed clear.  Fast forward nearly 12years and a small lump near my scar became intransit mets so surgery followed then another met 6 months later and onto the Checkmate 915 Ipi / Nivo adjuvant trial (1mg Ipi every 6 weeks and 3mg Nivo every 2 weeks). This I failed in 4 weeks when they discovered melanoma in the scar of my previous excision as well as another met on my chest neither of which were picked up in my pre-entry scans

    New Mel deemed to be unresectable so onto the full dose Ipi / Nivo.  Have completed 2 doses thus far and have generally felt fine with side effects limited to mild fatigue, dry mouth, a fever for a few days the week after my second dose and severe headaches (seem to be tension headaches in origin) this last week (2 weeks after 2nd dose) and feeling a bit hot occasionally.

    The Mel in my arm has been warm to the touch since I started Ipi/Nivo, but has not shrunk and if anything has got bigger.  During my lt infusion I could feel the Mel burning a bit and this did seem to last a few days but has now gone off.  I know it’s early days, but increasingly concerned it’s not working and would love to hear from others who had limited side effects, but achieved a response.  

    All the st

    Mark

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  • Replies
      • May 25, 2018 at 11:29 pm
      jennunicorn
      Participant

      These treatments take a while before they start to show response. Patience is key and a couple of infusions is wayyyy too early to judge. The burning sensation makes me think there is an immune response happening, things are getting "heated" if you will, between mel and ipi/nivo and that makes me think good things to come for you. Hang in there 🙂

      • May 26, 2018 at 1:19 pm
      kcmtnbiker
      Participant

      I also had increase in size of tumers when I started. Only half kidding I told the Oncolgist that it was acting as a fertilizer. My Oncologist said that was fairly normal as the tumor started taking on the antibodies. After about 6 treatments I started seeing sustained shrinkage and after a year on treatment was NED for a year. I am back in the routine and hoping for positive resutls again. But, since everything is now internal, i have to wait for scans. Good Luck!

      • May 28, 2018 at 6:40 am
      MarkR
      Participant

      Thanks for your words of encouragement, but evidently I spoke too soon!!

      Headaches became severe over the last few days and was admitted to hospital last night.  They think it’s immunotherapy related and currently having tests to rule out any other nasties.  Blood results show Liver tests 2x normal which is concerning as I really want to keep pushing through with treatment.

      Just got to wait and see and hopefully get back to treatment again soon

      Mark

      • May 30, 2018 at 3:15 pm
      Hukill
      Participant

      Your immune system seems to be reacting. Tumors enlarging are common as your immune system floods them. The side effects are a good sign and could get worse. After my third combo I ran fever for 6 weeks and had a dry mouth for 11 weeks, both were horrible. Now after nivo dose number 46 my mouth still gets dry for 1 to 2 weeks after but nothing like before. They even gave me artificial silava.

        • May 31, 2018 at 7:41 pm
        MarkR
        Participant

        Thanks

        hispital results showed swollen pituitary gland as a cause of headaches and elevated liver numbers are starting to come down with steroids.  Hoping to get back on the regime again in a few weeks as tumour in arm seems to be shrinking a bit now – fingers crossed!!

        they offered me the aritificial saliva but it sounded fairly horrible so make do with lots of water.  Really glad you are doing well on the drugs!!

        mark

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