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Scan results after 4 rounds of ipi/nivo
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Scan results after 4 rounds of ipi/nivo

› Forums › General Melanoma Community › Scan results after 4 rounds of ipi/nivo

  • Post
    • June 15, 2018 at 3:38 am
    steph4746
    Participant

      Hi all, 

      I had my first CT scan after finishing four rounds of ipi/nivo so I thought I did share my results  No detectable signs of melanoma!  I could not be more thrilled  The small met near my original groin lymph node site was gone (This is the location that appeared when the Taf/Mek began to fail) and the possible 3mm met (unclear because of lung scaring from loads of pulmonary embolisms last year) was gone too  

       

      My team is thrilled with my response and I will soon be back to treatment in a couple of weeks  I have had to take a small pause because I developed Hypophysitis after my fourth round  Additionally, I am now deleoping vitiligo of my skin and nails  My fingernails have grown in white and are sunken at the beds  Has anyone had crazy nail stuff happen with ipi?  I fear they may all fall off  

       

       

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    • Replies
        • June 15, 2018 at 4:02 am
        BillB
        Participant

          CONGRATULATIONS!!!!! Sounds like a great response, hope you are celebrating this victory.  I am only on Keytruda and not experience vitiligo. You and a small percentage of people develop vitiligo during treatment but it can be considered a positive factor in overal prognosis, so I have heard and read. Hope you can get back to treatment soon.

          Bill

          • June 15, 2018 at 3:04 pm
          sister of patient
          Participant

            Way to go!!! So pleased for you!! And yes, funky nail stuff can happen – my sister lost a thumbnail and big toe nail .. but they'll grow back 🙂 Best wishes!!!

            Barb

              • June 15, 2018 at 3:32 pm
              Coach2u
              Participant

                So happy for you and hopefully me as I just finished my second round of lpi/nivo last week. I was worried about not getting any side effects but last week they showed up with a vengeance. Nausea, headache fatigue. All most of us on this stuff have experienced. I got vitiligo 7 years after first melanoma on leg and 3 years befor discovering the second and third on my leg. Now it’s inside and on this treatment. You offer some hope , really happy for you.  MIke K. 

              • June 16, 2018 at 6:11 pm
              Julie in SoCal
              Participant

                Woohoo! Steph4746 this is fantastic and as I understand it, vitiligo and nail stuff corresponds with great outcomes!

                Let the SoCal happy dancing begin!!

                Peace,

                Julie

                • June 17, 2018 at 12:52 am
                aldrichdesigner
                Participant
                  I developed vitiligo rather heavily from keytruda. It’s not super noticable on my body as I am pretty fair skinned to begin with but it’s taken over most of my body and turned my hair white in many places as well. Like little splotches of white hair throughout my head. I actually get compliments about it sometimes because it does look rather unique but there’s nothing I can control about it lol. So yes vitiligo is a very good sign as melanoma is made up of melanin and vitiligo is caused by missing melanin in the skin. So great sign, take it as a positive and champion your progress so far and keep up fighting. Congratulations on having such positive results so fast, hopefully I’m right behind you but since it’s in my spine, it’s hard to tell if it’s all clear or not and I have a couple small lessions left in various places that I’m hoping are gone in the next round.
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