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Help/Advice needed. Ipi/Nivo no change on first Scan
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Help/Advice needed. Ipi/Nivo no change on first Scan

› Forums › Cutaneous Melanoma Community › Help/Advice needed. Ipi/Nivo no change on first Scan

  • Post
    • May 23, 2017 at 4:13 pm
    sami210
    Participant

      Hi All, 

      I am a long time lurker first time brave enough to post. I'm at stage 4 patient from the UK. I am BRAF positive. I was first diagnosed in 2009 due to a mole on my left arm. It was removed with clear margins. In 2013 I found a lump under my left arm which turned out to be melanoma stage 3b one node positive. Earlier this year after a routine CT scan they found Melanoma in two lymph nodes on my chest.

      I began Immunotherapy on the 21st March. I was hospitalised after the first treatment due to high temperature and chest inflammation and a bad cough, steroids eventually sorted me out. After the third treatment I had Uveitis and treatment was discontinued. The Consultant ordered a CT scan the results shows one of the lymph nodes looked slightly larger, he thinks due to inflammation. Also one spot on my lung 2mm in size which they are unconcearned about as he thinks could be anything, but given my medical history I'm worried.  Also my thyroid is damaged. I've an appointment with a specialist about it next week. 

      My Consultant had decided not to give me the next infusion of Ipi and move straight into the maintenance drug in the hope that I will respond. 

      I have to small children 10 and 5 and I'm left devastated my today's news I had put all my hopes on this treatment working.

      I suppose my question to you long term warriors is what would you do now?

      Sam xxx  

       

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    • Replies
        • May 23, 2017 at 6:11 pm
        betsyl
        Participant

          Hi Sam,
          Sorry for the struggles you've had.

          What maintenance drug are they putting you on? Nivo?

          My husband never went on Ipi due to preexisting UC. Instead they started him straightaway on PD-1 inhibitor (Keytruda), which *seems* to be working for him. His visible lump has melted away. We'll find out more when we get results from his PET scan.

          Anyway, my point is that even though they call anti PD1 a "maintenance" drug, it can be very effective on its own. Don't get too discouraged by what has happened so far. Anti-PD1 is a miracle drug for some.

          Wishing you the best.

          -Betsy 

            • May 23, 2017 at 7:10 pm
            sami210
            Participant

              Hi Betsy, 

              thank you so much for the response. Yes the maintance drug is Nivolumab. Everyone is saying it's such good news it hasn't spread but I don't feel that way at all. After reading lots of stories on here i'm not hopeful it's going to work at all. 

              I'm very happy to hear it seems to be working for your husband I wish you and your husband all the best, 

               

              Sam xx

            • May 24, 2017 at 3:09 am
            Bubbles
            Participant

              Hi Sam,

              Hang in there.  Perhaps these two posts will give you real hope.

              1.  This post shows that immunotherapy takes time!!!  While median time to responses is 10-12 weeks, there are those who do not respond until 6-10 months after initiation of therapy.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html  

              2.  Here is a post that notes that folks who had to stop the ipi/nivo combo due to side effects had overall survival rates that ended up the same as those who completed all doses at 18 months!!  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html  

              Additionally, I was diagnosed when my children were only 10 and 12 years of age.  I progressed to Stage IV with brain and lung mets…was treated with only nivo for 2 1/2 years….last dose in June of 2013 and I remain NED.  

              You can do this.  celeste

                • May 24, 2017 at 3:24 pm
                sami210
                Participant

                  Hi Celeste, 

                  thank you so much for your response. Both of those posts especially the first one  have definitely given me some hope. My scan was 8 weeks after the first treatment. To be honest by Consultant did tell me not to expect much to have changed but I couldn't help myself I was praying for a miracle. He thinks I am responding due to my side effects. I would rather wait for positive scan results!!!

                  I'm very happy you remain NED long may it continue and thanks again for your reply, 

                  Sam xx

                   

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