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First Infusion of Clinical Trial IMCGP100!
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First Infusion of Clinical Trial IMCGP100!

› Forums › General Melanoma Community › First Infusion of Clinical Trial IMCGP100!

  • Post
    • July 6, 2017 at 7:04 pm
    Cindyco
    Participant

      My mom starts her clinical trial today and receives her first infusion of IMCGP100!  She will be getting this weekly, with an additional dose of Durvalumab every 3 weeks.  

      Praying that this will be a promising treatment for her without much toxicity!  We're not sure why, but her liver numbers have been elevated lately.  This worries us, because she's had to stop treatment before for hepatitis (both on ipi/nivo and pembro).  We've been careful and not taking any supplements or anything herbal, so we're not sure what the cause is.  Maybe a continuing flare or reaction to last week's liver biopsy?

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    • Replies
        • July 6, 2017 at 10:25 pm
        Prd10
        Participant

          Thinking of you both today!  Hope the first infusion goes well.  I remember it being tiring just because it took so long, but not too bad!  Are they keeping her over night?  My liver numbers were high for a while after surgery, not sure if biopsy is the same.  They will watch them every week now so that at least should give you a good idea.  Take care

          Caitlin

            • July 7, 2017 at 6:41 am
            Cindyco
            Participant

              Yes, she is staying overnight tonight and then one more overnight again for Day 15 of the trial.  The infusion itself was only 15 minutes, but the rest of the day was blood tests and observation!  She had to stay at the infusion clinic from 7:00am-5:30pm, then to the hospital for the overnight. 

            • July 7, 2017 at 6:44 am
            Cindyco
            Participant

              Thanks for the good thoughts!  In case anyone else is interested in the trial, I'll post as many updates as I can to this thread so that it's in one place.  Around 10:00pm tonight, my mom broke out in little red bumps on her face in neck, eyes got puffy, and she was pretty itchy.  Nothing severe that she needed any medication or treatment for the side effects.  She was actually very excited to get side effects at all since she hopes the meds are working, and she was able to go to bed normally. 

                • July 9, 2017 at 3:53 am
                kaileetutt
                Participant

                  thanks for all of the info Cindy! great to hear how the first infusion went. hope she continues to handle it all well! keep me updated if you dont mind. you are in L.A. with Dr. Hamid correct? Do you know how many other people are enrolled in the trial there? 

                  • July 9, 2017 at 8:54 am
                  Cindyco
                  Participant

                    Yes, Dr. Hamid is our doctor and we really like him! I think my mom is actually the first mucosal patient in the trial since they just opened it to mucosal, but I know that there were other cutaneous patients on the trial.

                    After I posted yesterday, the swelling and itching intensified.  To manage it, we used ice packs, the steroid creams that we were sent home with, and a bath with baking soda.  Today, the itching got a lot better, but she is still pretty swollen.  We hope that these side effects are a good sign!

                  • July 12, 2017 at 7:30 pm
                  Cindyco
                  Participant

                    Second infusion was yesterday!  So far, similar side effects (itching, rashes, swelling), but less facial swelling.  Liver numbers improved as well.  Next week they will add the Durvalumab, so we hope that things go smoothly, since my mom had prior toxicities on when on Keytruda.

                      • July 13, 2017 at 5:30 pm
                      kaileetutt
                      Participant

                        Glad to hear she is tolerating it well so far! You guys are in my prayers. We are in contact with the University of Washington in St. Luois, MO & getting mom lined up for gp100. Hoping to get everything squared away by the end of the month. It's going to mean moving from Alaska for us but if it helps or gives us more time, its worth it! 

                        • July 13, 2017 at 6:53 pm
                        Cindyco
                        Participant

                          Thank you! I'm really praying that the treatment will be effective.  Because she had previous toxicity on PD-1, we are worried about her liver numbers after next week's infusion.  Keep me posted on how your mom does on the trial.  I don't know many people on it, so it will be interesting to see how other people respond.

                          • July 17, 2017 at 4:19 am
                          kaileetutt
                          Participant

                            I hope so too! Keep me updated. I will do likewise, we are still going through the sign up process. I know I would love to hear from other people that are doing or have done gp100! 

                             

                          • July 19, 2017 at 6:35 pm
                          Cindyco
                          Participant

                            Update after infusion #3:  Yesterday my mom got her third dose of IMCGP100, with the addition of Durvalumab.  Side effects that showed up later in the night: swelling on her face (worst than dose #2, but not as bad as the very first infusion), itching, and some rash.  The skin on her thumb also started peeling off.  Her liver numbers this week were lower than last week, which Dr. Freeman (who has temporarily taken over for Dr. Hamid) thinks is a sign that is a sign that the meds are working.  We hope that there will not be any toxicity to the Durvalumab, since it's PD-1. 

                            Because my mom has to go in weekly for the foreseeable future, they have suggested getting a port.  We will look into that. 

                              • July 21, 2017 at 9:22 pm
                              kaileetutt
                              Participant

                                Are they attributing the symptoms to the Durvalumab? I'm glad to hear her symptoms have been managable & she is able to continue treatment. When will they scan to see if there is regression? 

                                 

                                My mom goes down for her first intital appointment on Monday. 

                                • July 27, 2017 at 12:21 am
                                Cindyco
                                Participant

                                  I think the swelling symptoms are from the IMCGP100 in combination to the Durvalumab.  Durvalumab is just another PD-1 like Keytruda, which my mom has had before without any visible side effects (she did have liver toxicity, but nothing that manifested physically that we could have known about without a blood test).  They will scan on 8/29, so we won't know until then, but so far we are hoping all the side effects are good signs.  

                                  I'll keep your mom in my prayers.  Keep me posted on her experience on the trial!  Feel free to message me directly as well.  I sometimes don't remember to check this post.

                                • July 27, 2017 at 12:24 am
                                Cindyco
                                Participant

                                  Fourth dose of IMCGP100!  LDH is down, so hoping that is a good sign!  Praying that no toxicity from the Durvalumab kicks in!

                                    • July 28, 2017 at 8:54 pm
                                    kaileetutt
                                    Participant

                                      awesome! so happy to haer she is doing so well! excited to hear your after scans results. 

                                       

                                      So mom made it MO but it turns out that she has too much tumor burden in her liver to elgible for the trial. We were pretty upset, seems like every decision we make back fires. But they do have this other trial she may be a candidate for, Rova-T or full name: Rovalpituzumab Tesirine. It has been used in small cell lung cancer with great results, it is also a rare & very aggressive cancer. They just opened it for melanoma & few other types of cancers as well. She has to get a biopsy next week back in MO to test if her tumors are positive for the DLL3 protein. If they are we can actually run the trial through WA & its only treatment every 3-6 weeks so that means we dont have to move. yay! Trying to not get too excited before knowing biopsy results. At this point this is kind of our last hope for a systemic treatment. 

                                       

                                      I will continue to pray for you & mother! 

                                      • July 31, 2017 at 10:01 pm
                                      Cindyco
                                      Participant

                                        Thank you for the prayers Kaileetutt!  I was just thinking about you and your mom and I logged in to see if you had any updates.  I'm sorry to hear that she won't get to start the same trial as my mom, but glad that the doctor has another option and is moving fast.  You never know what your mom will respond to.  I hope you decide to share her experiences–so we can follow her updates!  

                                      • August 9, 2017 at 10:15 pm
                                      Cindyco
                                      Participant

                                        8/2/17- Fifth dose IMCGP100. AST/ALT significantly lower, but still elevated.
                                        8/9/17- Sixth dose IMCGP100.  Liver numbers were higher than last time, so we will need a blood test on Friday to confirm that there isn't any toxicity.  

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