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Only 1mg of Opdivo
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Only 1mg of Opdivo

› Forums › General Melanoma Community › Only 1mg of Opdivo

  • Post
    • January 26, 2018 at 8:07 am
    Sharon93065
    Participant

      Last August i couldn't have 4th.3rd Opdivo/Yerrvoy due to high liver panel. 2nd Petscan showed most of 6 tumors were gone, others shrank.  Finally weaned off of prednisone end of Dec. Dec 6th Petscan showed 2 new nodes 'lighted' up.  One by pancreas other on other side of gut. Fortuanately only one more week of prednisone at that time and Dr started me on Opdivo only every two weeks. Then my liver panel started to go up a little.  Dr. called me and gave me choice of continuing on Opdivo, or doing Yervoy alone or the targeted therapy and watch my lliver numbers.  Next test liver numbers down a little but still above normal. I asked whch treatment did he prefer i be on and he said OPdivo but that he didn't want me to not be ever able to take it.  I am on onl;y 1mg of OPdivo.  I asked what success rate has he seen with that low dosage and he said he hasn't used that low on anyone before without the opdivio.  If my liver numbers go down to th e normal range he will encrease it.  He also ordered new Petscan for end of Feb and brain MRI for Feb 4th. My previous brain MRI last May was clear.  I wondered if he ordered it because i was telling him about my brain fog i think the prednisone caused? 
      I am concerned about liver and being only on 1mg of Opdivo.  I wish there was a way to look at my liver numbers daily ha!  I get blood work once a week.  I have been getting blood work once or twice a week since my liver numbers went up Aug '27.  I am thinking of getting acupuncture for the liver???
      Has anyone had the low dosage of just 1mg of Opdivo?  Thank you for all of your previous posts that have given me advise and encouragement. 
      Sharon 

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        • January 26, 2018 at 8:11 am
        Sharon93065
        Participant

          AST NORMAL RANGE: BELOW  30
          1/3   1/15  1/22
          29       45      40
          ALT NORMAL RANGE:BELOW 54
          40      76      61

          ​These are the liver numbers. Last August were above 1200. 
           

          • January 26, 2018 at 1:47 pm
          Bubbles
          Participant

            Hey Sharon, 

            Sorry for all the craziness…but to answer your question:  Has anyone used 1mg/kg Opdivo?  YES!!!!  20 something of us for a start.  In 2010 I joined (along with 21 other ratties) the first arm of a Phase 1 Opdivo trial (though it was known as MDX1106 at the time).  There were two cohorts – those with advanced disease and those who were Stage IV, but currently NED after radiation and/or surgery. I was in that one, having had a zapped brain tumor and lung and tonsilar mets that had been removed surgically.  We took the drug at the 1mg/kg level for 2 1/2 years….and we have done pretty well.   The next arm treated two cohorts at the 3mg/kg level and later there was another treating similar cohorts at 10mg/kg.  Phase 1 trials are "dosing trials" after all.  Here's our published report (maybe you should share it with your onc!!  HA!):  

            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html  

            Many us from that study have long outlived our expiration date!  My last dose of Opdivo was in June of 2013.  I have not recurred so far and remain NED.  So….YES!!!  Opdivo at 1mg/kg can work!  I will have my fingers crossed for you!!!  Celeste

              • January 26, 2018 at 1:59 pm
              Bubbles
              Participant

                P.S.

                Ipi (Yervoy) is the bad boy of side effects in the combo.  So lots of folks can go forward with Nivolumab (Opdivo) alone at the normal dose after things settle out (sometimes with prednisone, a break, or in your case – with pred, no more ipi and a lower maintenance dose of Nivo) after having had the ipi/nivo combo, no matter the immunologic side effect that was induced.  It just takes a minute.  I wish you well.  C

                • January 27, 2018 at 4:20 pm
                Sharon93065
                Participant

                  Thank you Celeste.  I was telling my daughter how you had to get on a plane for your treatments rent a car etc and hold down a job.  Thank you again for all the research you share and help the rest of us. 

                  • January 27, 2018 at 4:21 pm
                  Sharon93065
                  Participant

                    Thank you Celeste.  I was telling my daughter how you had to get on a plane for your treatments rent a car etc and hold down a job.  Thank you again for all the research you share and help the rest of us. 

                  • January 26, 2018 at 2:41 pm
                  ed williams
                  Participant

                    Hi Sharon, I have had #'s above the normal limit quite often for ast/alt at the beginning of my trial. My alt upper limit is 63 at my hospital, and I have been at 74,77,90. Now for the last year or so it has remained below the upper limit. If you take a look at your Nivo orders to the nurses you should see 3x normal for ast/alt level as being fine. Here is a link to BMS and there treatment guidelines for liver function blood tests and other possible IRAE's. Best wishes!!!Ed. https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/125554lbl.pdf

                      • January 27, 2018 at 4:14 pm
                      Sharon93065
                      Participant

                        Just before my 4th and cancelled combo treament my Alt and Ast were up to about 1200.  After doing pred. my numbers were almost normal and went i was at .5 pred it went up to 300.  That was Sept it took until Dec to slowly get weaned off and have my numbers normal. 

                        • January 27, 2018 at 5:46 pm
                        ed williams
                        Participant

                          It all makes sense to me now, sorry for being a little slow on the uptake!!! Ed

                        • January 30, 2018 at 3:37 am
                        Mark_DC
                        Participant

                          Hi Sharon,

                          i am not an expert on dosing but i think your doctor is being creative and that is good. He is hoping for benefit but does not want your liver numbers to blow up. With luck it is the ipi that caused the liver numbers, so you may now be ok with the opdivo.

                          my alt hit 180 on pembro and i was taken off and put on prednisone

                          went back on pembro after a three month pause – tihs time the liver numbers were ok and have slowly come down so now i am even at the low end of normal

                          the blood tests create extra stress once you have had a bad result, but coming down from 1200 is amazing. Am writing just to reassure you that woth luck the liver problem may not recur. I think the dosage will help, following Celestes advice, and i think the doctor is creative which is a good sign.

                          good luck Mark

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