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Not NED but coming off treatment – need opinions, advice, any tips – please!
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Not NED but coming off treatment – need opinions, advice, any tips – please!

› Forums › General Melanoma Community › Not NED but coming off treatment – need opinions, advice, any tips – please!

  • Post
    • June 15, 2017 at 3:52 pm
    sister of patient
    Participant

      Hi all,

      Just wondered how others would feel in this position:

      My sister is undergoing her last infusion of nivo today. Her trial was limited to 48 weeks only and in that period of time, they aim for 24 infusons. Due to treatment interruptions, this last one is only # 23 and she won't get # 24, time is up.

      We've found out that there were two arms in her trial – one was nivo indefinitely, the other, which she's in, is the 48 weeks.

      She's come so far back from where we were a year ago that she's understandably very nervous. As far as we know, there is still one large liver met and several in the spleen. We know the nivo will continue to work but still…

      We can't "rock the boat" over this … can't go looking for another trial yet. I told her I'd ask others how they felt and what actions they might take in similar circumstances.

      Also, she had a brain scan last week and though we haven't seen the radioncologist yet, a nurse has confirmed the scan was good, so her driver's licence is "good to go." Yayy!!

      Thanks for any responses and wishing best to all on here!!!

      Barb

       

       

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        • June 15, 2017 at 3:54 pm
        sister of patient
        Participant

          Oops, don't know how that posted anonymously – didn't mean to. Sorry! 

          Barb

          posting on behalf of my sister, Leisa – Ancaster, ON  Canada

            • June 15, 2017 at 7:43 pm
            ed williams
            Participant

              Hi Barb, this is the big question for so many "when to stop" when you are not NED!!! The data that will come out of this trial will go a long way for future patients. Does she have the option to get more nivo down the road if she was to progress? If not, why not would be the question I would be asking her Oncology team!!! Best Wishes!!!Ed

              • June 16, 2017 at 2:44 pm
              sister of patient
              Participant

                Hi Ed,

                That question is top of the list … can she go back on it if we see progression? I've told her some of your situation and, like you, she'll take stable disease any day if an infusion every two weeks is the trade-off.

                There's more questions of course …, LOL, I am building quite a list.

                Thanks Ed, have a fabulous weekend!!

                 

              • June 15, 2017 at 8:32 pm
              Kim K
              Participant

                What about surgery to remove the spleen and lessen tumor burden or chance for mutated metastasis to grow?  Radio surgery, cryosurgery, or injections to the large liver met or possible resection of ameniable location?  There are so many trials coming out now you would have to keep something inside to measure any response.  Bubble posted several great articles from the most recent ASCO meetings.

                • June 15, 2017 at 10:13 pm
                Polymath
                Participant

                  Hi Barb,

                  My story might help a little.  After a year on the Nivo (ipi/nivo combo treatment) it looked like I had got all the benefit I was going to get from it because some smaller tumors had been eliminated, but a pair of more stubborn tumors were growing again, one of which a massive splenic tumor the size of a large grapefruit.  In anticipation of a surgery to remove the spleen (and also the other tumor), I went off the nivo by choice in November.  After a successful surgery in December, I remain off all meds, feel great, and am getting clean scans for now.  While I know anything can happen, there seems to be a lot of evidence on this board that one-year of immunotherapy provides all the benefit one will likely get from the treatment.  I think Celeste has quoted trials or specialists that have also suggested this.  So there's a very good chance that stopping now will make no difference over the near, and hopefully distant future. Best in the battle.

                  Gary

                    • June 16, 2017 at 2:35 pm
                    sister of patient
                    Participant

                      Hi Gary,

                      Yes, I've followed your story since coming on the board and I'm so glad you are doing well now. The first thing we asked was about removing the spleen but the answer was "no."  I'm wondering >> did your lymphocyte count show low results while on treatment … and how is it now (if being monitored) without the spleen?

                      I know there is a point where all the benefit to be gained is finished but we don't think she's there yet – though the last scan showed less changes than previous ones, we were still down by one liver tumour, the one remaining showed marginal shrinkage and the largest splenic tumour showed the same (marginal). Slowing down it seems … but we've also not had any more brain mets occur …. Is that from the nivo? abscopal affect from rads and immuno? … just don't know but we're sure glad!!!

                      I wish you continued good health Gary and hope you've turned your back on this demon forever!!!!

                      • June 16, 2017 at 3:40 pm
                      Polymath
                      Participant

                        Hi Barb,

                        First, Thanks for the good wishes.  As you know, there is no one-size-fits-all treatment with this evil beast.  For me, the splenectomy was needed because it was so enlarged, we were afraid it would rupture, and I'd end up in emergency surgery to save my life, rather than a controlled event.  My case is somewhat unique in that my body has shrugged off almost every drug treatment.  Very few side-effects, and very little response.  That's why surgery and radiation have been the main avenues of attacking the tumors.  My blood-work in most every way has remained almost normal before and after surgery except for LDH which had skyrocketed to over 500 with tumor load, and immediately dropped to a more normal 135 post surgery.  I do still maintain, as others have suggested that there reaches an end-point, where additional drug therapy only increases risk, but every decision is a personal one between Dr. and patient.  Thanks again for your support!

                        Gary

                      • June 16, 2017 at 3:02 pm
                      betsyl
                      Participant

                        My husband's doctor wants to stop (or at least pause) Keytruda after six months, whether or not my husband is NED at that time. The doctor thinks the body reaches a holding pattern where the immune system continues to work to prevent disease progression while not completely killing all the cancer cells. Of course, the upside of stopping immunotherapy sooner rather than later is you minimize the chance of long-term adverse reactions. 

                        • June 16, 2017 at 4:21 pm
                        sister of patient
                        Participant

                          Wow – Update: Out of the blue, a call  this morning from the nurse conducting the trial. They are going to continue to give Leisa nivo. I am so thrilled (and she is so relieved) … lots more questions now >> we don't know if it's just a regular course of treatment now (nivo is approved here) or if she's been switched over to the other arm of the trial … just don't know but we'll take it 🙂

                          Thank you again to everyone who helped me build my list of questions!!

                          Best,

                          Barb

                            • June 17, 2017 at 2:56 pm
                            AliCat61
                            Participant

                              That's WONDERFUL Barb! 🙂 Keep us all posted please. 

                              • June 17, 2017 at 6:16 pm
                              sister of patient
                              Participant

                                I  sure will Allison 🙂 Thank you!!!

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