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On Ipi/nivo 2/4 completed, nervous
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On Ipi/nivo 2/4 completed, nervous

› Forums › General Melanoma Community › On Ipi/nivo 2/4 completed, nervous

  • Post
    • March 4, 2019 at 4:03 am
    PhoenixJ
    Participant
      Hi folks, I am looking for some support. I haven’t been on this forum for several years because I was doing really well on a BRAF/MEK combo (braftovi/mektovi) 4 years and no evidence of disease progression. In May I had a previously treated brain met bleed and needed craniotomy number 4 path confirmed melanoma and not radiation necrosis. Now I have 5+ new brain mets the 2 largest have been treated with SRS. I have completed 2 infusions of ipi/nivo and I feel wiped out with no appetite and nausea. I also have a weird spacey head feeling. All my labs have looked good and I am planning on round 3 of the ipi/nivo combo. I am feeling nervous because I don’t know if or how quickly this combo will work. Anyone out there with brain mets have success with ipi/nivo? I think i am more scared now than when I was diagnosed.
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    • Replies
        • March 4, 2019 at 3:05 pm
        Bubbles
        Participant

          We have known for years that immunotherapy works in the brain.  We have also known for years that when immunotherapy is combined with radiation responses are even better than when either treatment is used alone.  Here are a ton of articles on ipi/nivo and brain mets:

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=ipi%2Fnivo+and+brain+mets  

          Here are tons of articles on immunotherapy and radiation:

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  
           

          Many of us are still here thanks to radiation and immunotherapy for brain mets.  Had brain and lung mets in 2010…still here after SRS to the brain and nivo alone for 2 1/2 years.  You can do this.  I wish you my best.  Celeste

          • March 4, 2019 at 5:30 pm
          marta010
          Participant

            Hi Phoenix – you have a lot in common with my husband.  He, too, has been on Braf (Tafinlar) for a long period – 5+ years – with mostly stable results throughout that time.  Last March 2018, he had his 3rd craniotomy after a previously treated brain met acted up.  Started with Keytruda after surgery/gamma knife and just completed his 15th infusion.  In January, his scans showed (or didn't show!) that he finally had no evidence of metastitic disease in his body or brain.  Still taking the Tafinlar along with the Keytruda and will do so until next Jan/Feb if all stays the same.  He's had a few issues with adrenal insufficiency but feels pretty good other than general fatigue and muscle aches that have been present for years.  I hope you find success with your brain mets from this treatment!  Take care.

            Ann

            • March 10, 2019 at 10:48 pm
            Ridingaroundwith27Jennifers
            Participant

              I had success with 2 small brain mets.  I only tolerated two infusions of the ipi/nivo combo before I had severe hepatitis but those two initial brain mets did go away completely.  While off treatment I had a third brain met appear and it was quite aggressive.  That one was removed via craniotomy and then I had post op targeted radiation and nivo.  That was March/April 2017 and since then MRIs have been clear aside from some radiation necrosis.  

              I know it takes a bit longer to see the brain mets shrink with Ipi/Nivo so try not to get discouraged if they don't disappear immediately.

              Good wishes to you.

              Jennifer

                • March 14, 2019 at 2:29 pm
                PhoenixJ
                Participant
                  I just had a brain MRI and the results are not good. Increased leptomingeal disease despite being on treatment. I have to go for a lumbar puncture today to check for signs of inflammation vs cancer cells. I don’t know if this treatment will work in time. Plus I am having GI effects that they held treatment number 3 for. I need some hope.
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