Help with trials and second opinions

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  • Post
    • July 22, 2017 at 3:38 pm
    brendon
    Participant

      I am researching places to go in the US for second opinions and what clinical trials I should consider and wondered if you kind, knowledgeable people might be able to assist.

      The context is that I am stage 4, had 3 doses of ipi/nivo before stopping due to colitis. Initial response was good with 50% reduction of tumors. But after a couple of months of steroids/immune suppression, there has been some new tumor growth. 

      One option is to start PD-1 (pembro) but given I have not had durable response from initial treatment, my oncologist is wondering if a clinical trial might be a better option. Any views on trials I might consider?

      I am also looking at somewhere to go for second opinion. Considering places like Memorial-Sloan, Dana Farber, and MD Anderson. Any thoughts and or other suggestions? I live in Seattle but willing to travel anywhere.

      Thanks so much 

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    • Replies
        • July 22, 2017 at 4:30 pm
        jennunicorn
        Participant

          UCSF is a bit closer than those other places and has an excellent melanoma center with great specialists and are very hands on in research and trials. I have been beyond happy with my care there. They were my second opinion when I was diagnosed and had tons of questions. I quickly made the switch so that was my primary place of care.

          https://www.ucsfhealth.org/clinics/melanoma_center/

          Those other places you mentioned are also great places, but you don't have to travel accross the country for excellent care 🙂

            • July 22, 2017 at 9:39 pm
            brendon
            Participant

              Thanks Jenn, I will seriously look into this. SF is definately logistically much eassier than the east coast.

            • July 22, 2017 at 4:48 pm
            mrsaxde
            Participant

              Hi Brendon,

              I am currently in a trial at Johns Hopkins. I see Dr. Sharfman there and I really like him. He told me he thought this trial was my best option at the current time, after getting Keytruda for almost 2 years. I looked at what information is available and so far, with limited data available, this combination of Opdivo with an experimental anti-LAG-3 antibody looks really promising for pre-treated melanoma patients.

              Here's the link to the trial description, along with the locations. Looks like they're recruiting in Seattle, which would be great for you.

              https://clinicaltrials.gov/ct2/show/study/NCT01968109?show_locs=Y#locn

              -Bill

                • July 22, 2017 at 9:44 pm
                brendon
                Participant

                  Thanks Bill. My oncologist in Seattle has mentioned this trial as a potential – he is currently looking into my eligibility for it.

                  How is it going for you? Any scans since starting? what are the side effects like for you?

                  • July 22, 2017 at 11:46 pm
                  mrsaxde
                  Participant

                    So far I have had three infusions, with little to no side effects. A mild rash, some fatigue. That's been it. My first scan comes up on August 11.

                    I've been posting to this board about my experiences. There hasn't been much to report on so far, but you might keep an eye peeled for future posts from me about it. From what you have described it sounds to me like you would meet the qualifications for this trial. Whether you do it or go for something else, I hope things work out well for you!

                  • July 22, 2017 at 5:26 pm
                  ed williams
                  Participant

                    Hi Brendon, I would take a look at the Angeles Clinic and Dr. Omid Hamid. The pembro + Ido inhibitor trial is some thing to consider!!! http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx

                      • July 22, 2017 at 9:46 pm
                      brendon
                      Participant

                        Thanks Ed. I will definitely look into Angeles Clinic/Hamid – and the trial you reference.

                      • July 23, 2017 at 5:59 pm
                      lindanat
                      Participant

                        Hi Brandon, as follow up Ed's recommendation of The Angeles Clinic … Dr. Morganna Freeman is also excellent.  I am a patient of hers since last October.  She is terrific and right on top of everything melanoma.  Good luck! 

                          • July 24, 2017 at 7:42 pm
                          AZSoCal
                          Participant

                            I would also highly endorse The Angeles Clinic and Dr Freeman. Most clinical trials should also offer travel support, although not 100%, should you end up in a study out of your area.  

                          • July 24, 2017 at 4:27 pm
                          Cindyco
                          Participant

                            Hi Brendon, My mom also currently sees Dr. Hamid at the Angeles Clinic and Dr. Freeman for her current trial of IMCGP100.  They are great and we definitely recommend them.

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