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Stage 3 B Opdivo
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Stage 3 B Opdivo

› Forums › General Melanoma Community › Stage 3 B Opdivo

  • Post
    • October 26, 2017 at 6:02 pm
    Nashvillian
    Participant

      THere is so much nuanance to all this I wanted to ask a question. I know there are folks that have been on Opdivo on here but are there any newly diagnosed stage 3b that this is the first line treatment after surgery? I am stage 3b so that is where I am at. Took out 34 lymph nodes one being bad , but it was macrometasis sentinel in my parotid.

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        • October 26, 2017 at 9:43 pm
        CajunEagle
        Participant

          Welcome.  I'm on a combo of Opdivo + Yervoy for right side of my head.  Just finished my 2nd infusion, and have two more to go (one every 3 weeks).  Then a PET scan to check it out after the 4th infusion  All Summer long they had me on Keytruda in which the tumor double in size.  I've been fighting this stuff since Spring of 2015, therfore I'm into the more toxic stuff.  Started as a little black dot between my right ear lobe and my sideburn.  Long story…..short, they took my entire right ear,,,,ear canal.. and mastoid bone in Spring of 2016.  Desmoplastic Mellanoma returned this past Spring, and have been pretty miserable all Summer  No causeitive factords except lots of fishing on Old Hickery and Percy Priest.  Hope to have good news in this December.  Hope all turns out fine for you.

          Larry

          Baton Rouge, LA.

          FRHS….class of 1965

            • October 27, 2017 at 5:13 pm
            Nashvillian
            Participant

              Are you still in Nashville?

            • October 26, 2017 at 11:20 pm
            ed williams
            Participant

              Hi Nashvillian, things have been happening very quickly in the adjuvant setting over the last year or so. Ipi at 10mg/kg was approved and just recently data from phase 3 trials of ipi vs Nivo have come out showing Nivo is way ahead in RFS stats. Here are some links to the data on stage 3 adjuvant treatments. Best Wishes!!!Ed http://www.nejm.org/doi/full/10.1056/NEJMoa1709030#t=articleResults and second link from Dr. Weber http://www.onclive.com/conference-coverage/esmo-2017/nivolumab-superior-to-ipilimumab-as-adjuvant-therapy-for-stage-iiiiv-resected-melanoma

              • October 27, 2017 at 2:10 am
              oocn
              Participant

                Nashvillian, very glad to hear that you've been randomized to Nivo! I'm another stage 3b patient here. Original site was on the ear, all nodes on one side of the neck removed. I'm on a different trial but recieving Pembrolizumab. Currently at 16 of 18 treatments and feel great. Best wishes to you throughout this journey. The drug both you and I are on is moving the needle for current and future patients. God Bless!

                • October 27, 2017 at 4:02 pm
                geriakt
                Participant

                  I had 25 treatment of Opdivo within 90 days of my Lymph nodes being removed at 3B. I am happy I had the treatment. I was fatigued a lot but now I feel great. I am NED 2.5 years now and I have not been sick with the cold or flu since I went on Opdivo. Go for it and I hope your insurance covers it. I was part of a clinical study so all 3B and above could receive treatment approved by the FDA. 

                  Tom 

                    • October 27, 2017 at 5:13 pm
                    Nashvillian
                    Participant

                      Yes insurance is covering it. I am one of the first ones to get it approved for this treatment i think outside of a trail. I go in Monday for my next treatment. Really outside the surgery, which was no joke, I have very little side effects except some fatigue.

                      • October 27, 2017 at 5:15 pm
                      Nashvillian
                      Participant

                        No cold huh thats wild. I have only been ftigued and thats about it. I am about the same  started treatment 50 days after surgery.

                      • October 27, 2017 at 6:45 pm
                      Threefitty
                      Participant

                        I am a 3b (ulcerated, 2.5mm, 3 sentinels with micrometastisis, no others on CLNR). I am in CT Checkmate 915 and the suspicion is "Opdivo only" arm. (vs. "both" and formerly it had a yervoy only arm which the study terminated, due to new data pointing to Opdivo superiority.) Congrats on getting insurance coverage. When Ed says, "moving quickly", that is the truth. Started my journey this March and in May and I was presented with "yervoy is the standard of care unless you are in a CT."

                        So I am happy to be there, and by appearances have been possibly saved a great deal of side effect anguish, while playing into better numbers.

                        I often get that feeling of there being a lot of nuance to this. But then again, as a consulting oncologist said, "this is a no brainer, and just where you want to be" (in the CT).

                        I did have one recent realization about this approach, which is that if you genuinely progress (see pseudo progression) while on a combo arm of nivo and yervoy, that would be a hard triple whammy to absorb that no "wait and see" person will have to endure at once.

                        But there's always a flip side to things and who would regret being agressive at 3B? Not me. 

                         

                          • October 27, 2017 at 7:09 pm
                          Nashvillian
                          Participant
                            Me neither . I went super agressive and have second guessed it because of a massive infection I got and still dealing with.
                          • October 28, 2017 at 2:20 am
                          Bubbles
                          Participant

                            Glad all of you have attained treatment.  Couple of bits of info that might interest you:

                            1.  I was an Opdivo only patient back in the "olden days" of 2010 as a Stage IV melanoma patient in an NED arm of a Phase 1 trial and remain NED to this day after 2.5 years of Nivo at only 1mg/kg AFTER brain and lung mets.

                            2.  I have been screaming for adjuvant treatment options ever since.

                            3.  Finally, while I hope your current treatments work perfectly – you do have options.  More than just immunotherapy works as effective adjuvant treatment in melanoma.

                            Here's a post that covers those points and my latest rant:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/adjuvant-treatments-in-melanoma-they.html  

                            Wishing you all my best, celeste

                            • January 14, 2018 at 12:24 pm
                            neilarama2017
                            Participant

                              Hello, hope your battle is going well, I started Opdivo as standard of treatment one of the first weeks it was released as a treatment in early Sept 2017.  Just had my 9th treatment, so far so good.  Some pimples and minor skin issues along with a bit of fatigue usually right when I wake up but good otherwise.  Wishing you luck..

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