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Recurrence after 10+ years NED
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Recurrence after 10+ years NED

› Forums › General Melanoma Community › Recurrence after 10+ years NED

  • Post
    • June 12, 2017 at 9:06 pm
    Shannon B
    Participant

      Just curious about this. Are there others who were NED for 10 or more years and had a recurrence?

      Shannon~ Willie's wife

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    • Replies
        • June 12, 2017 at 11:16 pm
        Bubbles
        Participant

          I have dear ones who went 10 years, 14 years, 17 years.  I went 7.  Melanoma doesn't play fair and knows no rules.  Celeste

            • June 12, 2017 at 11:26 pm
            Shannon B
            Participant

              What follow ups did you have after 5 years? 

              • June 13, 2017 at 12:13 am
              A
              Participant

                Just curious what stage they were originally before progressing if you know, Thanks,

                • June 13, 2017 at 12:43 am
                Shannon B
                Participant

                  Willie was stage 3 in 2006, unknown primary, 1 positive node. Now mets everywhere but his brain.

                • June 13, 2017 at 12:09 am
                Bubbles
                Participant

                  I'm not excatly sure what you mean.  But, I was Stage 3b in 2003.  I had random PET, then CT, then annual CXR as follow-up until something showed up on CXR in my lungs in 2010. (But you have to realize this was back in the dark ages of melanoma with no FDA approved treatments other than IL2 and interferon for melanoma and a schedule of follow up was a joke…albeit a poor one!) After watching it for a while a bronchoscopy showed that it was melanoma.  Then…MRI of the brain showed an additional brain met.  SRS to the brain. Surgery to the lung met.  By the end of 2010 I was again NED and entered a Nivo (Opdivo) trial for 2 1/2 years.  Through the trial I had CT's of the neck, chest, abd, and pelvis with MRI of the brain every 3 months and through the first year after.  Then I had those same scans every  6 months until I was 5 years out.  Now I am having them yearly…and am once again – 7 years NED.  Hope that helps.  celeste

                    • June 13, 2017 at 12:45 am
                    Shannon B
                    Participant

                      Willie didn't have scans after 5 years and just chest X-rays and labs. They released him last year at the 10 year mark. Now it's back… started ipi/nivo last week.

                    • June 13, 2017 at 1:28 am
                    brendon
                    Participant

                      Hi Shannon, I was NED for exactly 10 years before recurrence. Original was stage 1a with negative Sentinel Node Biopsy. Stopped seeing oncologist after eight years. Developed lymphedema more recently and check ups confirmed stage 4:( 

                        • June 13, 2017 at 1:30 am
                        Shannon B
                        Participant

                          Wow, same time frame as my hubby…..

                          • June 13, 2017 at 2:35 am
                          Nemesis
                          Participant

                            You got to see an oncologist for 8 years after 1a?

                            • June 13, 2017 at 3:03 am
                            CHD
                            Participant

                              Brendon, was your first sign of recurrence the lymphedema? 

                              • June 13, 2017 at 6:52 pm
                              brendon
                              Participant

                                Yes – the lymph issues began about two years ago with swelling in the ankle of the leg where the primary tumor was. My doctor was concerned and ordered a CT scan at that time – the nodes looked normal. Just over a year later, the lymph issues were much worse and I decided to go back to my onccologist at that time.

                                • June 15, 2017 at 2:02 am
                                CHD
                                Participant

                                  Thanks, Brendon.  I wondered because I have lymphedema in my right leg, the same side as my melanoma, but I realize it can also be due to the SLNB.  Still, this makes me realize I should keep an eye on it. 

                                  Cheri

                                  • June 15, 2017 at 5:18 am
                                  brendon
                                  Participant

                                    Yes, definitely keep an eye on it. Look out for the lymphedma worsening. Look out for palpable lymph nodes (I could eventually feel a few hard lumps in the groin). Do what you can to keep your immune system strong through diet, stress reduction, sleep, etc. Even if there are a few stray cancer cells in your system, a strong immune system can knock it down, like mine seems to have for a decade.  But also live your life 🙂

                                    • June 13, 2017 at 2:01 pm
                                    Alce123
                                    Participant
                                      I’m curious too… I’ve been 1a for the past year and have never seen an oncologist. What lead you to see one for 8 years?
                                      • June 13, 2017 at 6:47 pm
                                      brendon
                                      Participant

                                        I was referred to an oncologist for a consult after my diagnosis and he recommended annual follow up. I am wondering if it was a factor that I was close to T2a and the lesion was 0.96mm.

                                        • June 13, 2017 at 7:53 pm
                                        Janner
                                        Participant

                                          Staging has changed, too, from 8 years ago.  Stage 1a is much more exclusive than it used to be.  Two of my lesions were stage 1a when diagnosed, but are stage 1b by today's staging system.  Most oncologists don't see stage 1 individuals.

                                          • June 14, 2017 at 12:40 pm
                                          Nemesis
                                          Participant

                                            I am pretty sure T2a starts at 2 mm. Mine was 0.93 mm, so pretty close, and it has mitosis, so I was stage 1b, but I never saw an oncologist. I am pretty jealous of the level of care you got.

                                             

                                          • June 13, 2017 at 4:05 am
                                          Janner
                                          Participant

                                            Certainly there are alot of stage III still alive and kicking after 10 years.  But do you think they'd be monitoring this board 10 years+ later?  Honestly, I hope they aren't!  I've been on the board for over 15 years and the amount of people who have moved on is just astounding.  Remember, places like this are NOT representative of the full melanoma population.

                                              • June 14, 2017 at 1:19 am
                                              dianneCT
                                              Participant

                                                I bet I haven't looked at this board for six years.  Just living my life….Stage 3C 2004  lymph node dissection, 50 weeks of Interferon, Temodar and Isolated Limb Perfusion at Mass General.  Praying no recurrence, but am very aware of the possibility as my primary was very deep when finally diagnosed.

                                              • June 13, 2017 at 3:18 pm
                                              Ridingaroundwith27Jennifers
                                              Participant

                                                Hi Shannon,

                                                I was stage 1 back in 2006 with no issues and only mole screens every 3 months, then 6 months, then yearly.  At just about the 10 year mark we discovered I had stage IV.  Chest, lungs, adrenal glands, abdomen arm pits and two small brain mets.  I was even developing a tumor on my face.  After two months begging for a biospy I finally got at CT scan of my abdomen and biopsy with official diagnosis of metastatic melanoma.  Started Ipi/Nivo in September of 2016 and stopped after second dose in October 2016 due to severe hepatitis.  CT scans showed tumor shrinkage or disappearance after only two doses.  Drs decided to wait and watch.  MRI showed a new tumor in March.   This one needed surgery.  It started growning back ten days post op so radiation and started back on Nivo.  MRI looks good so far.  Hopefully I'm near to getting NED.  

                                                • June 20, 2017 at 7:51 pm
                                                seireland0611
                                                Participant

                                                  A bit late, but… My mom had a dark, irregular, raised, bleeding mole removed from her face about thirty years ago. No pathology. This January, she suddenly had brain mets. Craniotomy confirmed diagnosis. She's going good, has had gamma knife, and we're about to start ipi/nivo.

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