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going off Opdivo???
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going off Opdivo???

› Forums › General Melanoma Community › going off Opdivo???

  • Post
    • September 22, 2017 at 5:24 pm
    KAF
    Participant

      HI all,

      I have been one of the lucky ones who, after being diagnosed stage 4 in May of 2016, has had a full response to the drugs (3 x opdivo/yervoy, opdivo every 2 weeks since end of Oct 2016).  I have had the rashes, blown up pituitary 2x, vitiligo, swollen joints, etc… but I'll take it all for the amazing response I've had to the drugs.

      At my opdivo appointment today my doc informed me that she had gone to a conference 2 weeks ago and new data shows that being on Opdivo for one year after full response is sufficient but some docs still feel that 2 years is optimal.  She is not making any rash decisions but we were going to discuss again in a couple of weeks.  Does anyone have any knowledge about this or can share what they chose to do?

       

      thanks

      karen

    Viewing 10 reply threads
    • Replies
        • September 22, 2017 at 6:24 pm
        sister of patient
        Participant

          Hi Karen – Congrats on your CR!!!! That's excellent – so pleased for you!!

          We've been in a similar 'boat.' My sister's July scan showed CR after 17 mos. of immuno (only 2x combo May/16, break for WBR June/16, nivo only since July/16) and her onc planned to continue nivo until next scan in Oct. (we're hoping for official NED then) but at app't. this week informed us she now wants to continue through to next spring and bring it to the full two years. And … we're happy with that. 

          Hope that helps and best wishes whatever you ultimately do!

          Barb

          • September 22, 2017 at 7:13 pm
          Bubbles
          Participant

            As a Stage IV patient, I took Nivo alone for 2 1/2 years from Dec 2010 to June of 2013…..just because that was the length of the trial I participated in.  I remain NED.  Dr. Weber…the doc running my study, said then that we probably took the drug longer than needed.  Most researchers have come to believe that "a certain amount of the drug" will provide all the benefit it can.  Taking it longer will only increase the risk of side effects without increasing response.  EXACTLY how long does remain a bit of a question. However, trials and protocols for immunotherapy are rapidly moving from "taken until progression" to addministration for only 1-2 years.  I wish you my best.  Celeste

              • October 3, 2017 at 2:40 pm
              obtu.bt
              Participant

                hi Bubbles, would you please let me know the dose and frequncy that you were taken?

              • September 22, 2017 at 9:26 pm
              ed williams
              Participant

                Hi KAF, I have been searching for this answer for 3 years and 8 months and still searching!!!  I have probably watched every presentation on Melanoma from ASCO, ESMO, Onclive,CRI, Annual Los Angeles Melanoma Education Symposium and read every artricle on Melanoma that I could get my hands on and still no one melanoma specialist has said "here is the data that shows you only have to take Pd-1 drugs for this long". I have two links on the topic if you are interested, first from 2017 ASCO and the second one from a year earlier to show changing views over time!!! Best Wishes!!! Ed  https://www.youtube.com/watch?v=zaq1oMnY6sE  https://www.youtube.com/watch?v=aSXv02OdoO4

                • September 22, 2017 at 10:46 pm
                Christine.P
                Participant

                  Had I not stopped responding to ipi/nivo-nivo alone, my doctor's plan was for me to stay on nivo for 2 years. Sadly, I had new tumors appear and had to move on to Taf/Mek.

                  • September 23, 2017 at 3:04 am
                  geriakt
                  Participant

                    Read the New England Journal of Medicine article published Sept 10,2017 regarding the results of Checkmate 238. You may find the results amazing with one year of NIVO. 

                    I was part of the Clinical trial.  One year of NIVO. My last treatment was one year ago and cancer free 2 years now stage 3B.

                    Tom 

                    • September 23, 2017 at 4:04 am
                    Sharon93065
                    Participant

                      I love hearing these   stories on this website. Shows  hope for the rest of us.

                      I had 3 Opdibo/Yervo combos,  was waiting for liver numbers to come down (they are) to start Opdivo Maintenance.  2nd Petscan shows lung mass greatly reduced, mass on back shrunk and they cannot see the others anymore (lymph nodes groing, chest, armpit) so onc said to give my body a rest for a couple of months and get another Petscan in 2 months.  "Walking in Sunshine, oh yeah"

                      Sharon

                      • September 23, 2017 at 10:48 am
                      Mat
                      Participant

                        I'm treated at Penn but consult with MSK.  For complete responders, generally, MSK will suggest that you stop after 1 year.  For those with less than a CR, MSK will continue on a case by case basis.

                        • September 24, 2017 at 8:02 pm
                        Casitas1
                        Participant
                          I’m Ned 14 months now. Was on treatment (Keytruda) for 10 months and had CR. after 6. Congrats on Ned! Best, Paul
                          • September 25, 2017 at 3:25 pm
                          KAF
                          Participant

                            thank you all for your responses.  seems like there's no definitive answer to this.  The nivo has become my security blanket now and I'm afraid to go off but maybe I'll stay on for a few more months and see if I feel comfortable coming off of it.  The hospital is only 1/2 hour away, I work from home so its just as easy to work from my treatment room and my side effects are minimal so there is no pressing reason to go off of the nivo.  

                            • September 25, 2017 at 3:55 pm
                            cancersnewnormal
                            Participant

                              I think because folks have such varied responses as well as response times, we may never have a definitive answer to this WHEN question. I personally had a full response to Keytruda within 3 months (after surgery, I had a VERY low tumor volume). I continued with infustions for 20 months, because we were shooting for a full two years, and I had a bit of scar tissue in the brain still. I only made it to 20 months before pancreatitis began to set in, and the inflammatory arthritis got out of control. We decided to "take a break" from infusions at that point. That was 15 months ago. CT scans last week, and brain MRI from 3 weeks ago are all clear. It is indeed a nerve wracking leap to drop the safety net drug that has worked so well, but ahhhhhhhhhhh… what a wonderful feeling to spread out those doc visits and have the body start to balance back out a little! Congrats on the response! : ) 

                                • September 28, 2017 at 1:43 am
                                Dixie777
                                Participant
                                  Hello, Everyone. Thanks for informative posts. I have been on combo tx (yervo/opdivo) for melanoma Mets to pancreas, lung, groin, and buttock subq tissue. My first scan after three months of tx was clear. Very blessed. My adrenals and thyroid blew, and I was very I’ll until this was diagnosed, but I have done well on replacement therapy. I am into my 20th month of every two weeks Opdivo tx, and am really feeling like I need to stop. I have had scans every two months for past 20 months and am worried about excessive exposure. I feel like I need to cut back on tx and scans. It’s my instincts telling me this. My oncologist wants to keep going indefinitely. I’m in need of tips on how to get honest with my doctor. I have been 100% compliant and love my doctor and nurse. But I’m in conflict. Much of research er’s speculations support my decision to back off a bit, but I know the verdict is still out. Appreciate opportunity to brainstorm. You guys are great. Best regards, hope, and gratitude for us all.
                                  • September 28, 2017 at 1:43 am
                                  Dixie777
                                  Participant
                                    Hello, Everyone. Thanks for informative posts. I have been on combo tx (yervo/opdivo) for melanoma Mets to pancreas, lung, groin, and buttock subq tissue. My first scan after three months of tx was clear. Very blessed. My adrenals and thyroid blew, and I was very I’ll until this was diagnosed, but I have done well on replacement therapy. I am into my 20th month of every two weeks Opdivo tx, and am really feeling like I need to stop. I have had scans every two months for past 20 months and am worried about excessive exposure. I feel like I need to cut back on tx and scans. It’s my instincts telling me this. My oncologist wants to keep going indefinitely. I’m in need of tips on how to get honest with my doctor. I have been 100% compliant and love my doctor and nurse. But I’m in conflict. Much of research er’s speculations support my decision to back off a bit, but I know the verdict is still out. Appreciate opportunity to brainstorm. You guys are great. Best regards, hope, and gratitude for us all.
                                    • September 28, 2017 at 2:38 am
                                    rwaxsis
                                    Participant

                                      Just back from my husband's quarterly scan and doctor appointment.  Husband is one year into treatment; yervo/opdivo combination and now just opdivo.  Scans show no new tumors and slight improvement with each set of scans.  The doc discussed stopping treatment after two years, regardless of the degree of response.  He said there does not seem to be a benefit in continuing longer than two years and used the word "Cure".  Wow…    Doc also said that we will not be making a decision now, will wait until next year and discuss again then.  That will give another year's worth of data and opinions by all the experts.

                                      Doc also told us that Bristol Myer Squibb has applied for FDA approval to take Opdivo treatment to every four weeks with a double dose given.  Has anyone else been hearing that?

                                      Lots of positives for those lucky responders!

                                      • September 28, 2017 at 2:59 pm
                                      ed williams
                                      Participant

                                        I have heard the word cure used for Ipi patients that are out more than three years, used by the guy that developed the drug, Dr. James Allison. It is still kind of early with the Pd-1 drugs and combinations to be using that terminology but we can all dream for it to be true some day. Here is a link to BMS and the 4 week dose schedule application which should be decided upon by March!!! https://news.bms.com/press-release/corporatefinancial-news/us-food-and-drug-administration-accepts-bristol-myers-squibbs-

                                        • November 12, 2017 at 3:14 am
                                        Dixie777
                                        Participant
                                          Hey, Everyone! I made the trek to Perlmutter Cancer Center in New York City to see Dr.Jeffrey Weber. He agreed it was time to stop Opdivo after 22 month course. Yay! I am a complete responder with clear scans after first four rounds of combo. He is great to talk to as Immunotherapy/melanoma is his specialty and he is committed to getting latest research findings out to the patient. Check out his informative videos on line. Just Google Jeffrey Weber Immunotherapy and you’ll discover a wealth of knowledge. It was fun showing my son NYC and speaking with an expert in my disease. I learned so much and now feel confident in stopping treatment. Best to all. In hope, gratitude, and joy for this day.

                                        • January 29, 2018 at 7:30 pm
                                        Aaron
                                        Participant

                                          Karen, I was taken off of everything about 3 weeks ago.  I never achieved certain NED.  All we know is that I have something but whether it is dead scar tissue or active melanoma we are uncertain.  My trial was up on how many treatments I was to recieve so now we are in the wait and see part of the trial before we move on to the second arm, which I'm hoping we never have to do.  Hoping it is just scar tissue and never returns or becomes active.  

                                            • July 17, 2020 at 10:42 am
                                            matthat
                                            Participant
                                              Ive been on it for 19 months it cured my brain tumor at pons area for desmoplastic melanoma. right eye is effected some, and have some acid reflux issues from time to time. when is enoguh enough? I am thankfull for cure.
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