Update on Nivolumab and INCCB24360 Clinical Trial
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Update on Nivolumab and INCCB24360 Clinical Trial

› Forums › General Melanoma Community › Update on Nivolumab and INCCB24360 Clinical Trial

  • Post
    • March 25, 2016 at 8:22 pm
    nlac26
    Participant

    I started my clinical trial on March 3rd and what a busy day that was! After all the of the pre-testing they put you through, you'd think just taking the drugs would be the easy part. Not really!  My first day of the trial they put in 2 Iv's, one for the nivo infusion and one to pull blood from periodically for 8 hours. It was a long day at the hosptial to say the least. The infusion itself wasn't that bad. It lasted 30 minutes and then I was moved to a research treatment room for the remainder of the day. I take two pills a day of the IDO inhibitor as well. Sometimes I feel they make me a little wonky but as the month has progressed, those feeling have started to fade out. I had my second infusion March 17th. That one hit me a little harder and I was super fatigued and drowzy by the time my husband got me home. I slept the rest of the day, into the night and woke up Friday much better. I did the four rounds of Yervoy last fall and never felt one side effect from the treatment. I expected much the same from this treatment but it seems to be a little stronger. I met with the Dr yesterday and after an exam, we both agreed the tumor in my left armpit is shrinking! Of course, only a scan can prove that but when you've felt this huge lump in your arm for months and all of sudden it's not as noticeable, I have to believe these drugs are working! The little lumps lining my left shoulder blade are also gone! When you're constantly stuck with needles and ran through machines, believing in good news helps the decisions you've made in treatment worth it. We're very exicited and keep praying for the best possible result..NED! Next Thursday will be my 3rd infusion with dual iv's for more PK' blood studies. If I know it's working I can handle it a lot better!  I'll have my 8 week scan in the beginning of May to verify what we're all hoping for… Wish us luck as we keep fighting the fight! Niki

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  • Replies
      • March 25, 2016 at 8:58 pm
      ed williams
      Participant

      Hi Niki, I have been part of the checkmate 067 trial of Ipi and Nivo for the last two years and what you just described about fatigue has also been my experience every two weeks for the last 26months. I had my treatment yesterday and I kind of become a couch potatoe for 24 to 48 hr. I was watching a presentation by Dr.James Allison of M.D. Anderson Cancer Center where he was talking about IDO and Ipi and the improved results over ipi alone, and that trials were going to be starting with the Pd-1 drugs Nivo and Pembro as well. It is so cool to see all the new combination that are coming out in Immunotherapy. The fatigue that I have experienced seems to be pretty common with others in the checkmate 067 trial. The blood work is super important to the research, they are trying to find out who best to give these combinations to in the future. When will they be doing the first set of scans? Mine was at the end of 12 weeks and then every 6 weeks for the first year. Best wishes!!!! Ed

      • March 25, 2016 at 8:58 pm
      ed williams
      Participant

      Hi Niki, I have been part of the checkmate 067 trial of Ipi and Nivo for the last two years and what you just described about fatigue has also been my experience every two weeks for the last 26months. I had my treatment yesterday and I kind of become a couch potatoe for 24 to 48 hr. I was watching a presentation by Dr.James Allison of M.D. Anderson Cancer Center where he was talking about IDO and Ipi and the improved results over ipi alone, and that trials were going to be starting with the Pd-1 drugs Nivo and Pembro as well. It is so cool to see all the new combination that are coming out in Immunotherapy. The fatigue that I have experienced seems to be pretty common with others in the checkmate 067 trial. The blood work is super important to the research, they are trying to find out who best to give these combinations to in the future. When will they be doing the first set of scans? Mine was at the end of 12 weeks and then every 6 weeks for the first year. Best wishes!!!! Ed

        • March 28, 2016 at 9:37 pm
        nlac26
        Participant

        Hi Ed!  Yes! The fatigue always gets me the day of the infusion. I'm usuallly upbeat when I go in and barely holding my head up when I walk out.  We live about hour from the hospital and I always take a pillow and blanket so I can curl up in the car on the way home. My last infusion seemed to strike me harder than before so I'm not sure what to expect this Thursday for my 3rd infusion. I crashed really hard last time so I'm prepparing for the same. My trial runs in 8 week cycles.   They haven't scheduled my first scan yet but I was told by my study coordinator it should  be around the beginning of May. I'm actually looking forward to it and that's something I've NEVER said about a scan. HA! I feel like we've finally found something that's working and giving us hope! Thanks for support and best wishes to you as well!!  🙂 Niki

        • March 28, 2016 at 9:37 pm
        nlac26
        Participant

        Hi Ed!  Yes! The fatigue always gets me the day of the infusion. I'm usuallly upbeat when I go in and barely holding my head up when I walk out.  We live about hour from the hospital and I always take a pillow and blanket so I can curl up in the car on the way home. My last infusion seemed to strike me harder than before so I'm not sure what to expect this Thursday for my 3rd infusion. I crashed really hard last time so I'm prepparing for the same. My trial runs in 8 week cycles.   They haven't scheduled my first scan yet but I was told by my study coordinator it should  be around the beginning of May. I'm actually looking forward to it and that's something I've NEVER said about a scan. HA! I feel like we've finally found something that's working and giving us hope! Thanks for support and best wishes to you as well!!  🙂 Niki

        • March 28, 2016 at 9:37 pm
        nlac26
        Participant

        Hi Ed!  Yes! The fatigue always gets me the day of the infusion. I'm usuallly upbeat when I go in and barely holding my head up when I walk out.  We live about hour from the hospital and I always take a pillow and blanket so I can curl up in the car on the way home. My last infusion seemed to strike me harder than before so I'm not sure what to expect this Thursday for my 3rd infusion. I crashed really hard last time so I'm prepparing for the same. My trial runs in 8 week cycles.   They haven't scheduled my first scan yet but I was told by my study coordinator it should  be around the beginning of May. I'm actually looking forward to it and that's something I've NEVER said about a scan. HA! I feel like we've finally found something that's working and giving us hope! Thanks for support and best wishes to you as well!!  🙂 Niki

      • March 25, 2016 at 8:58 pm
      ed williams
      Participant

      Hi Niki, I have been part of the checkmate 067 trial of Ipi and Nivo for the last two years and what you just described about fatigue has also been my experience every two weeks for the last 26months. I had my treatment yesterday and I kind of become a couch potatoe for 24 to 48 hr. I was watching a presentation by Dr.James Allison of M.D. Anderson Cancer Center where he was talking about IDO and Ipi and the improved results over ipi alone, and that trials were going to be starting with the Pd-1 drugs Nivo and Pembro as well. It is so cool to see all the new combination that are coming out in Immunotherapy. The fatigue that I have experienced seems to be pretty common with others in the checkmate 067 trial. The blood work is super important to the research, they are trying to find out who best to give these combinations to in the future. When will they be doing the first set of scans? Mine was at the end of 12 weeks and then every 6 weeks for the first year. Best wishes!!!! Ed

      • March 26, 2016 at 6:59 pm
      BrianP
      Participant

      That's sounds so promising Niki.  I don't recall hearing of many others on the board who are on that combo.  I've always thought that sounded like a very promising combination.  Looking forward to the confirmation from your scans that the drug is working for you.  Thanks for keeping us up to date.

      Brian

      • March 26, 2016 at 6:59 pm
      BrianP
      Participant

      That's sounds so promising Niki.  I don't recall hearing of many others on the board who are on that combo.  I've always thought that sounded like a very promising combination.  Looking forward to the confirmation from your scans that the drug is working for you.  Thanks for keeping us up to date.

      Brian

      • March 26, 2016 at 6:59 pm
      BrianP
      Participant

      That's sounds so promising Niki.  I don't recall hearing of many others on the board who are on that combo.  I've always thought that sounded like a very promising combination.  Looking forward to the confirmation from your scans that the drug is working for you.  Thanks for keeping us up to date.

      Brian

        • March 28, 2016 at 9:38 pm
        nlac26
        Participant

        Thanks Brian! So far, so good with this combo. We're keeping our hope and faith high in good results. Thanks for the support! Niki

        • March 28, 2016 at 9:38 pm
        nlac26
        Participant

        Thanks Brian! So far, so good with this combo. We're keeping our hope and faith high in good results. Thanks for the support! Niki

        • August 3, 2016 at 8:58 pm
        karimg
        Participant

        Is there a way to figure out the clinical trial options ?

        • August 3, 2016 at 8:58 pm
        karimg
        Participant

        Is there a way to figure out the clinical trial options ?

        • August 3, 2016 at 8:58 pm
        karimg
        Participant

        Is there a way to figure out the clinical trial options ?

        • March 28, 2016 at 9:38 pm
        nlac26
        Participant

        Thanks Brian! So far, so good with this combo. We're keeping our hope and faith high in good results. Thanks for the support! Niki

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