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NED No More

› Forums › General Melanoma Community › NED No More

  • Post
    • January 18, 2018 at 7:01 pm
    AshleyS
    Participant

      I’m mad, I’m in shock, and I’m exhausted. 

      I hate typing my story so you can just go look at it. Here’s the need to know: After having mets nearly everywhere, I’ve been NED since November 2015. I finished Opdivo in March 2017. 

      Last Thursday I found a lump under my left armpit. I had a biopsy this morning. I was prepared for the worst and the best and I got news in between. They believe it’s superficial melanoma. Of course I need scans now. 

      Have any of you progressed after being stage four and then NED? Has anyone only had superficial melanoma at this point? 

      My kids are 3 and 5. I was pregnant with my son when this all “heated” up. I just want to be in their lives. 

      Ashley

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    • Replies
        • January 18, 2018 at 7:02 pm
        AshleyS
        Participant

          I should clarify I’ve never had brain mets. 

            • January 18, 2018 at 7:16 pm
            rosa1
            Participant

              I am stage IV, been NED for a year and then last November I had to have an emergency small bowel resection due to a mass, which turned out to be melanoma. I am now on Ipi/Nivo. Wishing you the best.

              Rosa

              • January 19, 2018 at 3:44 pm
              RayPMcConnell
              Participant

                I was diagnosed Stage 4 in January of 2015 with mets throughout my lungs, and NED since October of 2015 after two infusions of ipi/nivo.

                At each of my follow-up appointments I ask my oncologist at the University of Michigan if he knows of anyone with a total response to immunotherapy that has had a recurrence, and, as of my last appt in October, he had not.

                I keep up with these boards to check on any such recurrences, and yours is the first I’ve seen.

                I will keep you and your family in my daily Rosary, Ashley.

              • January 19, 2018 at 10:06 pm
              Bubbles
              Participant

                I am sorry for what you are going through, Ashley.  Take this with a grain of salt…but once you have been NED out 2 plus years, the chance of maintaining that status is around 70+%.  (That is data from looking at Kaplan meier curves researchers have put out regarding response and progression and learning way too much about melanoma over the past 15 years.) So…on the plus side…that means that most folks don't progress AND those same curves show us that the longer one has an NED status…the further decreased their chances of progression are.  Sadly, it also tells us that 30% of patients can progress and that no matter how far out NED melanoma patients have gotten on the time line….so far….we haven't gotten the chance of progression to nothing.  HOWEVER!!!!!!  I am still going to hope, with all my fingers and toes crossed, that your biopsy results will NOT turn out to show melanoma and/or that scans remain NED.  But, even if the worst transpires and you ARE positive for melanoma….there is still HOPE!  There are many additional treatment options you can pursue should you need them.  It won't be fun (as you well know), but if needed, you can do this and the options improve daily.  Hang in there.  Hug your critters and keep us posted.  Celeste

                • January 21, 2018 at 10:16 pm
                Mat
                Participant

                  Ashley, sorry to hear.  Especially tough (mentally) following NED status.  No doubt with the variety of treatments available, you'll beat it back again.

                  • January 22, 2018 at 2:19 pm
                  BrianP
                  Participant

                    I'm so sorry to hear this news Ashley.  I really want to put in all caps a few choice four letter words but I'll refrain from that.  I remember an appointment I had a couple years ago with Dr. Weber.  At the time he was thinking that complete PD-1 responders would probably have about a 90% chance of remaining NED and strong partial reponders would be around 70% chance of maining stable.  I suspect he would probably down grade that prognosis now to be closer to what Celeste replied.  Hang in there Ashley.  We'll be anxiously awaiting hopefully good news from your scans.  

                    • January 22, 2018 at 4:33 pm
                    sister of patient
                    Participant

                      Hi Ashley – I'm totally with Celeste in hoping this is not mel nor anything else that can harm you!!! Holding all the best thoughts and have everything crossed as well in wishing the best possible news for you!!

                      Barb

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