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options & yervoy opdivo question
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options & yervoy opdivo question

› Forums › General Melanoma Community › options & yervoy opdivo question

  • Post
    • June 2, 2018 at 5:35 am
    napavalleymogie
    Participant

      Hi All, 

      It royaly sucks that any of us are here.  Stage IIIC with in transit tumors from incision site.  I am now on the combo treatment for the second infusion.  Tumors seem to be growing and makes me nervous. Anyone have knowledge of how tumors look when getting better? 

      If is is not working, the next step or question is Tvek, TIL, Crispr 9….  what are the next things on the horizon?  with the new bill "right to treatment" how will this change things?

      My tumors on surface in transit with clear ct scan.  1 year since first SNLB.  Keytruda didn't work. 

      Also, who knows about the new microdose approach (ron levy – stanford)? 

      Appreciate the advise, 

      Eric

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    • Replies
        • June 2, 2018 at 12:36 pm
        ed williams
        Participant

          Hi Eric, I would watch the news from ASCO this week, where they are reporting the data on on going trials. a couple of things that I am following is the Lag-3 + Nivo trial as well as NKTR-214 + Nivo. There are other interesting areas of research and I am sure that Celeste ( bubbles) will probably be putting out some posts of her favorites. T-vec has worked for many with in transit melanoma!!! The question about Levy and his vaccine work is a big question at this time, mouse models work great for a lot of trial combination but real work trials in humans take time and don't always pan out, I would call it interesting but early days. Over the years hundreds of attempts have been made to find a vaccine that would work, keep the fingers crossed on that one. I haven't heard of Crispr 9 , do you have any links on it??? For those who have not seen Dr. Levy of Stanford's research, here is the link!!! Best Wishes!!!Ed  https://med.stanford.edu/news/all-news/2018/01/cancer-vaccine-eliminates-tumors-in-mice.html

            • June 2, 2018 at 3:28 pm
            napavalleymogie
            Participant

               Crispr9 is something to look hard into https://www.researchgate.net/publication/321291627_First-in-human_Phase_1_CRISPR_Gene_Editing_Cancer_Trials_Are_We_Ready

              UCSF will be unveiling a similar clinical trial as dr levy within the next year as wel dubed "micro dosing."

              With the right to try law, I am trying to see if I can double up with yervoy/opdivo with tvek.  

              • June 2, 2018 at 4:23 pm
              ed williams
              Participant

                If you read the last sentence of the article they say they don't support the idea of the trial due to lack of scientific data??? This is what you are looking hard into??? The right to try law will be for late stage 4 patients that have no other options and can't get access to a new drug in development. T-vec is already approved for stage 4 melanoma patients. Here is a SITC document that lays out best practises for treatment for each stage. It was developed by a panel of medical professional that belong to SITC. If you look at the late stage 3 injectables section and stage 4 section you will find current thinking and recommendations for t-vec.https://jitc.biomedcentral.com/articles/10.1186/s40425-018-0362-6

                • June 2, 2018 at 8:25 pm
                napavalleymogie
                Participant

                  I should note that my background is an owner that manufactured trace elemental specific to speciation analysis of inorganics and custom reference material of organics applied to mass spectroscopy.  Crispr has been used in trials for past 2 years in china for melanoma, which has been very difficult to see results other than they are having success and progressing.  university of penn is gearing up for crispr trials sometime this year as a phase 1 clinical trial (stage 4).  thanks for the link.  

                  https://www.nature.com/articles/srep20070

                  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5769084/

                  http://theconversation.com/what-is-crispr-gene-editing-and-how-does-it-work-84591

                  • June 2, 2018 at 9:32 pm
                  ed williams
                  Participant

                    Hi Eric, thanks for the links, the second one was most interesting!!! The whole article if I may recap is talking about conflicts of interests of Dr. Carl June(NIH expert in TiL's) and many issue that have to be resolved including if I am following this correctly the ethics and validity of the trial. Doesn't sound like it will be coming to any hospital near us soon!!! Maybe some day this could be standard of care but it is not even in human trials in America yet and the second article would make one think, not any time soon. After the recent failure of Pembro +IDO inhibitor I think that the gold rush in Immunotherapy might just slow down a little and return to slower development and proof of principal approach being followed, so back to  phase 1 to 2 to 3 trial development and jumping the gun like with the Pembro+Ido trial might have made a few players in the big pharma community take a second look at their plans.

                  • June 2, 2018 at 7:51 pm
                  Bubbles
                  Participant

                    Sorry for what you are dealing with, Eric.  I think it is great to make sure you stay on top of the research.  I think the Right to Try law is definitely a step in the right direction.  However, combining everything at once is not always the best choice and I fear "the right to try" does not make "insurance companies cover" that option…which I fear will be tantamount to the law not existing for many.  In regard to your specific treatment options, I think Ed makes some good points.

                    Here is a link to a wide variety of data, research, and treatment options for in-transit mets that I have posted:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=in-transit  

                    They cover several years of posts so you'll have to scroll through to find what you are interested in.  I think intralesionals (esp PV-10 and T-VEC) have been doing particularly well for folks with in-transits, esp when combined with immunotherapy.  Limb profusion therapy can be quite effective. Some topical products like imiquimod and even radiation are being combined with other therapies and proving to be helpful.  All of these things are available in trials, though clinical trials are their own bear…been there done that as has Ed…and take a certain tenacity to find and access…but obviously can be done.

                    Hope these helps.  Ask more questions as you need.  These board is filled with some smart, caring peeps.  I wish you my best.  Celeste

                      • June 2, 2018 at 8:26 pm
                      napavalleymogie
                      Participant

                        thank you!

                        • June 5, 2018 at 3:44 am
                        Roborant
                        Participant

                          Coincidentally, here is a trial found on clinical trials.gov featuring both of those two intralesional therapies you mentioned as helpful to in-transit melanoma (PV-10 vs T-VEC) arms in competition in a phase 3. The TVEC arm is Dr.’s choice of TVEC or chemo. 

                          PV-10 vs chemotherapy or Oncolytic Viral Therapy for Treatment of Locally Advanced Cutaneous Melanoma

                          ClinicalTrials.gov Identifier: NCT02288897
                          Recruitment Status : Recruiting
                          Last Update Posted : April 20, 2018
                          See Contacts and Locations (25 locations)

                          Sites include your cancer center in Florida Moffitt with Dr Jonathan Zager and MD Anderson with Dr Merrick Ross where TexMelanomex was treated (but in a different pv-10 trial). I see several notable Melanoma KOLs running sites. 

                          Sanjiv Agarwala at St Luke’s in PA

                          Robert Andtbacka at Huntsman in UT

                          Axel Hauschild in Kiel Germany. 

                          These last two were intralesional therapy skeptics before they were convinced otherwise by good data. 

                          I hope everyone here has tried to survey clinicaltrials.gov periodically to keep up with new trials or sites that are now recruiting for patients to discuss with their doctors. 

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