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Any good resources for response times of Opdivo?
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Any good resources for response times of Opdivo?

› Forums › General Melanoma Community › Any good resources for response times of Opdivo?

  • Post
    • October 4, 2018 at 11:17 pm
    NEDnotDead
    Participant

      Any good resources for response times of Opdivo? I was expecting CR with my last scan at 9 months but was supprised to be just SD.

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    • Replies
        • October 5, 2018 at 12:38 am
        ed williams
        Participant

          I would take stable any day of the week!!! I am almost at the 5 year mark as a partial responder on Nivo with stable scans for the last 4 plus years after initial shrinkage of lung mets. A complete response is nice but sometimes images show tumor but it might be not metabolically active. Have you had a Pet-Ct yet or just ct with contrast?

            • October 5, 2018 at 2:43 pm
            NEDnotDead
            Participant
              Hi Ed, That is very encouraging to hear. I have not had a pet scan since the beginning so I have no idea what is happening to all my bone mets. All I do know is that I was loaded with cancer upon diagnosis, partial paralysis due to monster tumors on my hips and not feeling very well in general. I had radiation treatment to save my legs and started on the combo ipi/nivo in January, which seemed to stop the disease in its tracks. Today I am living a normal and active life with no pain and am extremely greatful.
            • October 5, 2018 at 10:23 am
            Bubbles
            Participant

              Here is a graph you may find interesting:

              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html  

              A few points:

              Melanoma sucks great big green hairy stinky wizard balls….so we often have to wrap our head around things that don't seem great.  In other words, SD is considered a response!!!  "Response rates" include all sorts of "responses" and are not equivalent to a "complete response".

              Sometimes with immunotherapy, lesions that remain visible on scans are sometimes no longer active tumor…rather just debris and tissue left over from where the actual tumor had been.  I cannot say that this is the case for you…but it can happen.  A "tumor" will remain for a long time and on biopsy, this is what will be found.

              I don't know your history, but sometimes if only SD (or no repsonse) is attained with nivo as a single agent, ipi can be added.  Response rates to anti-PD-1 alone are about 40%, combining ip with anti-PD-1 can increase the response rate to 50%+.

              I wish you my best.  celeste

                • October 5, 2018 at 3:31 pm
                NEDnotDead
                Participant
                  Hi Celeste,

                  I appreciate your wealth of knowledge and find your blog incredibly helpful.

                  I did get 4 treatments of the combo at the beginning and it seemed to stop the disease in its tracks. The CT scans consistently show no change in size of the 3 tumors in my liver, tumors on both of my adrenal glands and two involved lymph nodes in each armpit. I had a lot of bone mets which I believe are gone, but this can’t be verified by the CT scans.

                  My oncologist doesn’t share much with me and I find this frustrating. Maybe this is intentional, but as you know, makes us seek information from other sources.

                  Thanks again for being you!

                  Chris

                  • October 5, 2018 at 4:48 pm
                  HeidiZ
                  Participant

                    Hi Chris, I had 4 doses of the combo and continued with 16 keytruda infusions thereafter.  I'm a stage IV patient as welI and in the beginning also had a small reduction at first and thereafter stable disease. I had cancer all over my liver, spleen, neck, head and I remember feeling frustrated that it wasn't completely going away and only staying stable but It wasn't until I finally had a Pet/Ct scan that showed no uptake that made me happy.  My last infusion was August 2017.

                    Heidi

                    • October 5, 2018 at 5:18 pm
                    NEDnotDead
                    Participant
                      Hi Heidi,

                      Thanks for sharing. What was your blood work like during treatment? One thing I should mention is that my ldh was 1467 before treatment and has not been over 150 for the past 5 months. My blood work has often been described as pristine!

                      Chris

                      • October 5, 2018 at 5:42 pm
                      HeidiZ
                      Participant

                        My bloodwork was always good too and my LDH was the highest 6 months into treatment at 329.  I believe the normal is between 130-250 U/L and everytime I get blood work done it's still around 224, 234, 219 which kind of bothers me because I wish it was on the lower end.

                        Heidi

                        • October 5, 2018 at 6:08 pm
                        NEDnotDead
                        Participant
                          Crazy how we always want better, but your LDH was probably never lower then 220 before cancer. Like who checks there LDH once a month other than melanoma patients.
                        • October 6, 2018 at 4:41 pm
                        MelanomaMike
                        Participant
                          Hi NednotDead (still love yer handle!) I started the Combo ipi/nivo in early May (or was it late April?) Of this year (2018) had first scan a few weeks ago so, thats what, 5 months & scan showed (tumors are in my lungs) somewhat “stability” my big bastard in RLL got bigger (didnt respond at all) my second biggest in my LL (left Lobe) shrunk! And all others that where labled “submilimeter” before & are “still” submilimeter with no further growth!…so, now that i think about it, i probably shouldnt have entered this post cuz im not realy taking Nivo by itself, i had 4 bags of Yervoy in the beganing, but who cares! It coulda been the Opdivo that did “all” the work!! (And maybe Yervoy was just the grumpy old Foreman talking shit the whole time?)…
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