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Started Ipi.nivo
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Started Ipi.nivo

› Forums › General Melanoma Community › Started Ipi.nivo

  • Post
    • December 6, 2018 at 3:11 pm
    VinceMart
    Participant

      Well, I started ipi/nivo on Monday after having SRS Friday before.  So far, I have had back pain to where i could not sit, stand or lay down, which moves around and as of yesterday sharp groin pain on my left side.  My visible tumors continue to grow.  Unfortunately, I had to start a streroid due to the pain almost bringing me to my knees even on pain meds.  I am hoping this is just the storm before things start to calm down a bit.  I definitely progressed fast on my wash out period coming off the Braftovi/ Mektovi.  They told me things could get alot worse but wow, I am a little surprised at how weird things are with pain moving around and all.  I can't drive, can't work, trying to be positive and upbeat.  Thanks for listening.

      Vince

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    • Replies
        • December 6, 2018 at 3:33 pm
        Johnjk04
        Participant

          Vince, wishing you the absolute best. I had melanoma in almost every organ. Then 6.5 years ago I participated in the very first ipi/ nivo trial, been NED ever since. I know that the pain and swelling are upsetting but it's letting you know that there is a reaction happening. Have a great holiday and enjoy your recovery.

          • December 7, 2018 at 2:13 am
          sing123
          Participant

            Hi Vince, will keep fingers crossed that your pain subsides soon as you adjust to the new treatment. And John, so encouraging! 

            • December 7, 2018 at 3:24 am
            WithinMySkin
            Participant

              Hi Vince – the in-transit in my leg also grew larger and super tender when I went on Ipi/nivo. After 2 infusions, it had completely disappeared. Hoping that this is a sign of good things to come!

              Lauren

              • December 14, 2018 at 6:17 pm
              Prd10
              Participant

                Hi Vince,

                I also recently started IPI/Nivo on November 27.  I had no wash out period from mektov/braftov.  My back pain was hurting the next day but was manageable but within a few days I was in the hospital from the pain and I couldn't stop vomiting as well.  It seemed impossible that it could grow that fast but I went back on the Taf/Mek and I will also continue on the ipi/nivo.  We have no idea how they will work together but I'm kind of running out of options and time.  The Taf/Mek has worked well for me with the exception of the lepto disease so hopefully the IPI/Nivo will manage that. Just a thought.  

                Caitlin 

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