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Who is NED for 5 or more years?

Forums General Melanoma Community Who is NED for 5 or more years?

  • Post
    sing123
    Participant
      Feeling a bit down after hearing of the loss of two of our rock star posters – Melanoma Mike and Julie of SoCal. Thought it might perk me (and anyone else) up to start a roll call of those of us who have been NED for 5 years or longer. If you are, please share!
    Viewing 28 reply threads
    • Replies
        Cat
        Participant
          Clinical Trial Participant
          I am 9+ years NED! I am very blessed.
          Becky
          Participant
            Its not me but my son..it was just before his 21st birthday when he got a melanoma dx ( state 3, oral)…tomorrow he turns 33!
            Rocco
            Participant
              Clinical Trial ParticipantNED
              Diagnosed Stage IV in Aug 2005.  NED since Feb 2009!  Hang in there!
              SABKLYN
              Participant
                9 years 6 months.  Stage IIIa
                jbronicki
                Participant
                  My husband is 7+ years NED.  Stage 4 with unknown primary
                    Marilyn Nolan
                    Participant
                      I am also stage 4 unknown primary and was wondering if you care to share the meds he took that worked and his experience with them.

                      i am about to start Yervoy/Opdivo combo since I have Mets to the spine and have just undergone back surgery and radiation to remove the tumor.  I also had neck lymph node surgery twice to remove malignant nodes.  Then did Pembro alone only to find out the spine had a tumor; so the pembro alone did not work.

                      Would love to hear others stories about successful treatment and how bad the side effects were.

                      Thanks for sharing and best of luck with your good news.  Hope to be able to share this exciting news someday soon!

                      Marilyn

                       

                    Bubbles
                    Participant
                      Diagnosed Stage IIIb in 2003.  Stage IV in 2010.  Living with melanoma for 18 years.  NED for melanoma for 11 years.
                        Marilyn Nolan
                        Participant
                          Hi All,

                          I am stage 4 unknown primary and wonder if anyone on the forum would like to share their treatments which were successfull!

                           

                          I have had 5-6 Keytruda infusions and then got a malignant tumor on my L5 lumbar spine.   Had to have surgery and now radiation.   Wondering what the next treatment will be.  Anyone with clear scans please share with me what worked for you, if you don’t mind.   You give me hope and that is so appreciated even at this point.

                          Congrats to all and so happy to hear so many good positive postings.

                          Thanks!

                          Marilyn (MelMal)

                          dodgedh2
                          Participant
                            I was diagnosed at  Stage 4 w/unknown primary. I have been NED for over 13 years.
                          Casitas1
                          Participant
                            Just had my 6 year nedversary stage 4.

                             

                            Rick from NC
                            Participant
                              Dx Stage 4 in Oct 1991, complete response to IL-2 at NIH in 1992, so coming up on 29 years NED.
                              sing123
                              Participant
                                Wow, it is wonderful to read these words. Thanks all!
                                Charlie S
                                Participant
                                  Dx’d Stage III unknown primary 1987.  Surgery and lax cell therapy.  Quiet for 9 years until 1996 then roared back Stage IV.  Year of Interferon (yeah, yeah, I know all about it……………….NOW) surgeries again, all in all I think eight recurrences over the following nine MORE years, did I think 47 doses of IL2 2005, quiet for 3 more years, more surgerythat was 2008 then quiet for five more years and then onnnnnnnnnnnnnnnnnnnnnnnne more dance with the devil in 2013 and did Yervoy.  That finally did it………………(well given my track record…………..maybe-maybe not !)  All quiet for 8 years now.

                                  Oh yeah, throw in two back surgeries and a stroke somewhere in there……….I digress.

                                  When I was first diagnosed in 1987, the Onc said I was a time bomb and it was not a matter of if I would recur but when.  I had no earthly idea melanoma would carpet bomb my hind end.

                                  I have lost a lot of people very close to me from Melanoma over the years and I have partied thru the night with many as well.

                                  Yep, I do have a dose of survivors guilt.

                                  Durable remission, dunno.

                                  All in all though I am quite Undead and the score now stands at Melanoma Zero—Charlie 44………….and I would still win if there is ever a medical show called “Scar Search” and I do think it sucks that there are NO frequent scanner miles.

                                  That’s my story and I’m stickin’ to it.

                                  Cheers,

                                  Charlie S

                                  Charlie S
                                  Participant
                                    Duh, seems I was embracing cocktail hour a bit toooooo much and my math skills were suffering…………that game total is Charlie 34-Melanoma 0.

                                    NOT 44.  Jeeze I”m old but no that old !

                                    Cheers,

                                    Charlie S

                                      Rocco
                                      Participant
                                        Clinical Trial ParticipantNED
                                        Glad to see Charlie S posts – it’s been a while.   I get survivor’s guilt now and then as well.
                                      sing123
                                      Participant
                                        Charlie S, you are grand! Thanks so much for posting.
                                        Bubbles
                                        Participant
                                          You rock, Charlie!!  So good to hear from you!  c
                                          AshleyS
                                          Participant
                                            I found out I had advanced stage Melanoma in July 2014. After I delivered my baby in December of that year, they found tumors all over my body. I have been NED since November 2015 and finished treatment in March 2017. My daughter will be nine this year and my son will be seven. There was a time when I didn’t know if I would see their third and first birthdays. I just come on here every once in a while to see how folks are doing and if there’s anyone who is pregnant with melanoma.

                                            Keep on keeping on!

                                            ❤️

                                            Ashley S

                                            Mark_DC
                                            Participant
                                              Well done Charlie, i thought it was IL2 that worked for you, but turns out it was ipi. Thanks for all your stories they kept me going through my treatments
                                              Mellani W
                                              Participant
                                                15 years NED as of May 24 of this year. I was stage 3b in 2006, had 3 surgeries and a short round of GM-CSF.
                                                SOLE
                                                Participant
                                                  Hi,

                                                  Diagnosed July 13, 2016 with a

                                                  very very rare ulcerated nodular acral melanoma. First thought to have rare isolated cells in one lymph node (making me stage 3b AJCC7 at the time) then turned out there was apparently a staining error and re-analyzing the SLNB slides 3 times made me either stage 2b or 2c AJCC8.

                                                  5 years NED tomorrow. To be confirmed by PET/CT scan Sept. 2nd.

                                                  Unsepected and indescribable life-transforming events from beginning to this day.

                                                  My prayers are with all of us.

                                                  maryb-z
                                                  Participant
                                                    Although not NED for 5 years I am still here 12 years after being diagnosed. Lots of recurrences, surgeries, interferon, clinical trial, T-vec and most recently completed 2 years of Opdivo. Grateful for all the bonus time.
                                                    ErikaWithOptimism
                                                    Participant
                                                      Hi beautiful people!  Reading this thread brings me Hope!  **Thank you all, & Healing Light to you!**  I had a melanoma (mole) removed in 2001 (plus 2 surgeries to remove/test lymph nodes & glands, which were clear!)

                                                      *19 years later*… BAM! My left leg went numb, & I had a focal seizure in that leg (frightening as heck, but I breathed my way through it.)

                                                      Scans showed 2 tumors in my brain; 1 in my lung; & 1 in my middle intestine. Recent MRIs & a colonoscopy failed to spot any of these tumors, dammit. What?! They apparently grew quickly.

                                                      So, the terrible year of 2020 got in a final punch with this diagnosis of metastatic melanoma, stage IV.  And I started 2021 (celebrating my 52nd birthday) with brain surgery, targeted radiation, & 3 weeks in the hospital, with NO visitors because of covid. Arrgghhh, isn’t that rotten?!

                                                      HOWEVER! ~ I’m responding super well to immunotherapy! All the tumors (including 17 tiny new ones that had appeared in my brain) have shrunk ~ & some can no longer be detected. Opdivo continues!

                                                      7 months after the December ’20 diagnosis, my left leg numbness continues, & I’m still using my wheelchair & walker ~ but I’m also taking steps without them!

                                                      I’m remaining (mostly) deeply optimistic… I continue to hear my Inner Voice respond with calm, grounded positivity when my panic, anxiety, & morbid fears arise. I light a candle every morning & meditate on images of Healing Light!

                                                      Something that continues to nag me is my longing for a partner ~ a lover, supporter, cuddler, & co-conspirator in everything, profound & mundane. Some of you know, it’s very, very hard to go through this as a single person.

                                                      So, I’m here to gain & give fellowship & support! PLEASE point me in the direction of active threads & groups (including on other interweb sites). Thanks, & Best Blessings***

                                                      tedtell1
                                                      Participant
                                                        Good morning Erika;

                                                        I read your note and it sounds like it has been tough but you have done a great job keeping on keepin on. This is a tough journey with a loving partner and supportive network, can’t imagine how it would be without that, so big props to you on navigating. I wanted to reach out and point you to a great FB (if you are on FB) group. It is only for stage IV melanoma people and caregivers and has a lot of people going through this journey whom are supportive, knowledgeable and caring.

                                                        https://www.facebook.com/groups/just4melanoma4s/?multi_permalinks=4117784301610615

                                                        I copy and pasted the link. It is a private group, so Ashley the admin may take a few days to respond when you request admittance.

                                                        Blessings and good vibes to you,

                                                        Ted

                                                         

                                                        clgardner
                                                        Participant
                                                          Hi all,

                                                          I absolutely love reading all your personal stories. It fills me with lots of hope.

                                                          Thanks you for sharing

                                                          Clare

                                                          Christinad
                                                          Participant
                                                            Hi All,

                                                            Thank you for sharing your success stories. Gives me hope when I’m down or feel like giving up. I am now stage 4 , diagnosed with stage 3 in 2014. Just finished 4 combo doses of opdivo/yervoy.  Moving on to the maintenance phase and hope it’s easier. I’ve had horrible side effects of the immunotherapy, so hearing that so many of you are NED gives me hope that I could be in that category.  Im going to keep on keeping on.

                                                            sister of patient
                                                            Participant
                                                              Not 5 years yet but in the 5th – so happy to report that my sister, Leisa, remains NED!!!

                                                              The site’s changed so much and most of the profile info seems wiped out (maybe it’s there and I can’t find it) but I’ll just add that this is NED after a huge tumour load in bones and organs and hundreds of micro-mets in her brain. Immunotherapy (mostly nivo) and WBR did it all!!!

                                                              Please, never lose hope ..!!.. though I know that’s much easier said than done!!

                                                              Big hugs to all.

                                                              Barb

                                                              Jude14
                                                              Participant
                                                                Hi All,

                                                                Diagnosed Stage 4 no existing primary and given 5 months to live back in December 2011. Needless to say, I’m still here. (4 recurrences, 4 oncologists, 3 surgeries, radiation, several immunotherapy clinical trials: graduated from vemurafinib to Ipi to finally pembrolizumab which worked but gave me AI hepatitis so no more of that.) NED just about 5 years now with scans to come next month. It’s been an incredible body, mind, soul  life lesson.

                                                                Mellani W
                                                                Participant
                                                                  I am 15 years, 3 months NED. I was dx’d with Stage 3B in April 2006. Had SNB, WLE, and LND and a short round of GM-CSF. I don’t come around the forum much anymore but I just found out I have a CDKN2A mutation and need to research it more.
                                                                  SOLE
                                                                  Participant
                                                                    I just wanted to follow up on my post of July 12th here.

                                                                    What I thought absolutely impossible in 2016 has happened.

                                                                    I am now confirmed 5 years NED.

                                                                    May NED be with you all forever.

                                                                    Sending everyone my most heartfelt loving thoughts.

                                                                    Sincerely,

                                                                    M

                                                                    lkb
                                                                    Participant
                                                                      Love this thread! Thanks for initiating (sing123) and thanks for posting, five-year NEDers.

                                                                       

                                                                      BillB
                                                                      Participant
                                                                        Four years Ned today. Just got results of my scans and consider myself extremely lucky and fortunate. Good luck to everyone, and I don’t like this forums format. The old forum was much nicer. Shoutout to everyone (celeste, Ed, et al  etc) to keep up the great work you have been doing for so long!

                                                                        Bill

                                                                        Bubbles
                                                                        Participant
                                                                          Oh, Bill!!!  Congratulations!!!  So glad to hear your excellent news and see you here!!!  (And we all agree with you entirely!!!!)  Enjoy!  c
                                                                            BillB
                                                                            Participant
                                                                              Thanks Celeste. Ive been here all along just don’t like this format. If I can add something that you, Ed and Jackie don’t cover I will. Hope all is well with you!

                                                                              Bill

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