MRF-Logo2019-Horizontal-RGB
Survivor Rollcall???
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Survivor Rollcall???

› Forums › General Melanoma Community › Survivor Rollcall???

  • Post
    • September 23, 2018 at 1:55 am
    aldrichdesigner
    Participant
      Think we could all use this boost from time to time to understand just what’s possible these days. All survivors please respond but I’m selfishly interested in the stage 4 numbers …

      I’m going on 1.5 years since being diagnosed stage 4 and another 9 before that when they found the primary. So I’m already at 10.5 years since my very first positive biopsy. Currently stable and on keytruda and really hoping to get another 10.

    Viewing 12 reply threads
    • Replies
        • September 23, 2018 at 1:04 pm
        Gene_S
        Participant

          My husband had his first biopsy in 2008 in Jan. 10.5 mm SLN negative Stage 3.  Oct. 2010 Stage IV in Liver, Lungs and unresectable at Cervical spine C1 and 2 area.  Mar. 2011 Started Clinical trial Ipi 10 mg/kg and GMCSF.  July 2012 became NED stayed on trial until Dec. 2013. He is NED for over 6 years.

          Judy (loving wife of Gene

            • September 24, 2018 at 5:10 am
            RodG
            Participant

              My husband was diagnosed with Stage 3c mm on the heel of his left foot in June 2002. Within 6 weeks of surgery with WLE his groin ymph nodes enlarged and it was determined that the melanoma had spread. Not having faith in interferon he opted not to have his nodes removed and tried various natural supplements and healing modalities. To this day we have no idea what may have worked in his favour but he had no evidence of disease for 9 years following the initial surgery. In March 2011 the melanoma returned as a small tumour close to the original primary. Again he opted for surgery only. This was done a few times between 2011 and 2017, until  scans revealed tumours in his abdomen and another in his foot which could not be surgically removed. The amazing advancement in melanoma treatment during those 16 years gave us the opportunity to try immuno and targeted therapy, both of which were longingly awaited by many for years. Stay positive, be a warrior and set goals (my husband was determined to see his little girl graduate from high school in 2008). He saw that and the arrival of his grandson 5 years later. Keep on keeping on…. 

            • September 23, 2018 at 4:40 pm
            MelanomaMike
            Participant
              “Reveille Reveille!”
              Diagnosed 2008 as 3b (9yrs of surgeries, reoccurences all in left leg including Lymphnodes)
              Diagnosed Aug 2017 as stage 4 (scan & biopsy revealed it snuck into both lungs)
              Did #7 bags of Pembro didnt work..
              Did #4 bags of ipi & #5 nivo didnt work
              My immunolTherapy first began Nov2017 to Sept 21 2018 with all these listed
              Im still here! Hah hah! Reveille!!
              One Year As Stage 4!! Im tough i guess, cuz it isnt due to meds working!!

              • September 23, 2018 at 6:28 pm
              HeidiZ
              Participant

                Diagnosed in May 2015 with melanoma on scalp. Stage IV since February 2016. 4 doses ipp/nivo combo and then 16 keytruda. Stopped treatment last August and recent pet/ct shows no enlarged lymph nodes.

                Heidi

                  • September 23, 2018 at 9:21 pm
                  MelanomaMike
                  Participant
                    Hi HeidiZ, great news! And im assuming NED? and can i ask (im still learning) enlargement of our Lymphnodes doesnt necessarily equal desease? Nevertheless We are still here!!…
                    • September 23, 2018 at 11:08 pm
                    HeidiZ
                    Participant

                      Hi Mike, after you asked about enlarged nodes and I rechecked my pet scan report, it actually says no abnormal FDG uptake, sorry.  When I was going through treatment they were always measuring the size of the lymph nodes. I’m still learning too!  It seems that the melanoma usually travels through lymph node and of course blood but once the lymph nodes increase size from the melanoma is that what turns into a tumor?i. I don’t know? I go to Sloan and my surgeon said I can say I’m NED but my Oncologist didn’t want to say that.  I guess they don’t know for sure because there is still microscopic disease?

                      Heidi

                      • September 24, 2018 at 12:36 am
                      MelanomaMike
                      Participant
                        Hi Heidi, thanx for clarifying! I was gunna say! When i get a cold my Lymphs in my throat swell! Swelling just means their doing its job (i think to Filter & attack the bad!) so, i visualize our Lymphnodes being tiny Road Blocks straticlly placed throughout our Lymphatic Hiways & Biways, stopping Intruders & Looters and, sometimes, the Guards at those road blocks get “paid off” & let them bastards in! and well, you know what happens after that,(assuming its cancerous Melanoma) they set up camp & start growing!… i do know Tumors arnt born from swollen nodes, its our healthy Cells that (for lack of a better way to put it) Turn against us & become Evil Cells! Which in return become Tumor Cells! bastards! Darn traitors! Haha…what a biological world we live in! Lol..be well sister Heidi..
                      • September 23, 2018 at 9:50 pm
                      Edwin
                      Participant

                        I was diagnosed with stage 4 melanoma 3 years ago.  I have been reasonably healthy for the past 2 years.

                        From August 2015 to April 2016 I had increasing pain and fatigue.  I received radiation to a rib, then Keytruda immunotherapy. In February 2016 walking became very painful.  My March 1 PET scan showed that cancer had spread to many more bones. A bone biopsy on March 18 found melanoma. I received Yervoy/Opdivo immunotherapy on April 1, June 3, June 24 and July 15, 2016.  My first combination infusion made me very sick.  On July 27, 2016 I tried running and was surprised that I could.  My August 23, 2016 PET scan "showed significant positive response to therapy".   I continue receiving Opdivo and all my bone cancer seems to be gone.  I have cancer under my left jaw, but I do not feel it.   This week I ran a total of 30 miles and bicycled a total of 104 miles.  I ran the October 1, 2017 Twin Cities 10 Mile in 1:19:25 setting a new Minnesota 10 mile age 74 road race record.   I am registered for the October 7 Twin Cities 10 Mile;  the Minnesota 10 mile age 75 road race record is 1:22:52.  Three years ago I did not expect to live 3 years. Now if running conditions are good, I will try to set another Minnesota age record.

                          • September 24, 2018 at 1:58 pm
                          cancersnewnormal
                          Participant

                            Double high fives to you Edwin!!! Kickin' ass and taking names! My weeks are EITHER 30 miles of running OR 100 on the bike… but certainly not both… and I'm just pushing into 50 years old this year. Dude… you're my new hero!

                            • October 8, 2018 at 9:51 pm
                            Edwin
                            Participant

                              Sunday morning I ran the Medtronic Twin Cities 10 Mile in 1:22:13.  This is a new Minnesota 10 mile age 75 road race record; the old record was 1:22:52.  I was 1st of 11 finishers in the 75 to 79 age group.  I hold the age 67, age 68, age 74 and age 75 Minnesota 10 mile road race records.  In 2016 I could not run from February to July due to melanoma in many of my bones.  I thought that I would probably never run again.

                            • September 23, 2018 at 10:56 pm
                            iskitwo
                            Participant

                              Stage 3 in 8/2016 after 2 years tumor on lung moved me to stage 4, currently on Nivo and NED

                              • September 23, 2018 at 11:44 pm
                              Rocco
                              Participant
                                Diagnosed with stage IV Mel Aug 2005. Five surgeries, radiation and IL-2. Then turned to two trials, the last being MDX-010 (Ipi). Complete that in Jan 2009, NED ever since despite having to treat IPI side effects for about 20 months with high dose steroids. Life is good. Hang in there everyone!
                                  • September 24, 2018 at 12:47 am
                                  MelanomaMike
                                  Participant
                                    Good Lord Rocco! You have the best, most “Extensive”, Well detailed, MRF bio (Treatment History) iv ever seen! Ive made some Jiffy Popcorn and cozy on the couch with my feline pal reading as we type! Very good, very good and prayers & good vibes yer way! You are HOPE incarnate…;)
                                  • September 24, 2018 at 1:52 pm
                                  cancersnewnormal
                                  Participant

                                    Primary was July 2007. Stage IV hit April 2013. Surgeries, gamma, Yervoy, MEK, and finally Keytruda. My last infusion was July 2016. I've got a CT this Wednesday, and another check of the brain at the end of Oct… buuuuuuut… so far clean and clear! Living life at about 95% of what I used to… but hey… we have to factor increase in age for some of the slowdown too. LOL! 🙂  

                                    • September 24, 2018 at 7:51 pm
                                    Richard_K
                                    Participant

                                      1998 – melanoma stage 1B, did surgery

                                      2007 – myoepithelial carcinoma, did surgery

                                      2009 – melanoma stage 4, IL2 did not work, vemurafenib did (still on vemurafenib)

                                      2010 – prostate cancer. Very slow so choosing to just monitor for now.

                                      2010 – squamous-cell carcinoma, did surgery

                                      2014 – melanoma stage 1A, did surgery

                                      • September 24, 2018 at 11:48 pm
                                      Casitas1
                                      Participant
                                        Still here! Diagnosed 2b late 2009. Stage 4 June 2015. NED 28 months! Best, Paul
                                        • September 25, 2018 at 2:05 am
                                        Ridingaroundwith27Jennifers
                                        Participant

                                          Diagnosed stage IV Sept 2016.  2 infusions ipi/nivo.  Severve hepatitis.  6 months off treatment.  Aggressive brain tumor and craniotomy March 2017.  Radiation and nivo April 2017.  Still on nivo and still here.  It's been a hard road but I'm alive.

                                          Good wishes to you all,

                                          Jennifer

                                          • September 25, 2018 at 2:26 pm
                                          Abbygx2589
                                          Participant

                                            I am happy to report that my dad is now over 2 years stable with stage 4 with brain mets! Ipi/nivo for two years (trial ended this spring) and radiation for some of the brain mets. He just got scans results this morning! Happy to share the hope

                                            • September 26, 2018 at 1:58 am
                                            marta010
                                            Participant

                                              Husband, Larry, diagnosed in March 2012. Still battling 6+ years later. Zelboraf, ipi, 5 gamma knife treatments, 3 craniotomies, 5 years on dabrafenib, now on 2nd effort with Keytruda. Made it through many rough side effects and feeling pretty good at the moment. Stable disease but never NED. 

                                              Ann

                                              • October 8, 2018 at 1:31 am
                                              dodgedh2
                                              Participant
                                                I was diagnosed as Stage 4 (unknown primary) in 2008. After surgery and gamma radiation treatment during surgery, I’ve been NED.
                                            Viewing 12 reply threads
                                            • You must be logged in to reply to this topic.
                                            About the MRF Patient Forum

                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                            Popular Topics