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Multiple Primaries
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Multiple Primaries

› Forums › General Melanoma Community › Multiple Primaries

  • Post
    • September 28, 2018 at 9:11 pm
    lkb
    Participant

      Has anyone here had more than one primary lesion? Was the treatment WLE? Unfortunately, I found another primary lesion today on the border of my scalp WLE for the first primary. Of course, my discoveries seem to always come on Fridays–literally, every single one–and I have calls into my Onc and Mel Derm. Any other Multiples out there, what was your experience?

      Thanks,

      Lisa

    Viewing 5 reply threads
    • Replies
        • September 29, 2018 at 12:44 am
        MelanomaMike
        Participant
          Hi Lisa! Oh jeez-lah-weez! Thats it, quit scheduling your visits for Fridays, make em’ Mondays, Mondays suck anyways….
          Now, im not the smartest here but, you mean 2 or more Primaries of melanoma tumors/lesions that are “NOT” related DNA wise to eachother correct? If so, im also a client! My last biopsy/WLE on my left leg last year (2017) came back as 99.9% NOT the Father of last 5 tumors babies they WLE’d in my past since my first dig/primary of 2008.
          So, if all them other 5 tumors never popped up in my left leg from 2008 to 2017, then 2017 would have been my actual Primary date, i thought that was interesting when they told me this..now its in my lungs, my newest “strain” of Melanoma is much more aggresive and doesnt care for a leg, a thigh a foot, it wants my SOUL! haha..please tell me im understanding you??!!…
            • September 29, 2018 at 1:14 am
            lkb
            Participant

              Thanks, Mike! You are understanding me, but since I always find these darilings (1 lesion, several bumps) with my hand/eye (not at an appointment) on a Friday, it takes days to learn what they mean. For example, I don't yet know if this one was sired by its WLE'd neighbor, an inch away. I had already arranged a 2nd opinion appt at Dana Farber in Boston for Tuesday, so I'll see what happens there. (You and your soul are going Monday in LA, right?) Oh, and my weekly calendar is, from today forward, proceeding directly from Thursday to Saturday, non-stop.

              Lisa

              • September 29, 2018 at 2:29 am
              MelanomaMike
              Participant
                Atta girl Lisa! Mondays have ALWAYS been “the” day of termoil, back to school/work and a fab day for bad news, come Friday,Ha! Yer already over it! But we digress…
                Hopefully, HOPEFULLY you dont have a 2nd primary, now Bubbles or Ed W. Or Jen & the rest of the crew may need to chime in to say DONT worry (or worry) but, i dont know if it makes our situation worse? However, my first Primary tumor & the 4 after ONLY enjoyed my left legs “Meatiness” if you will, and Did not want to migrate into any other parts of my body. Now, Primary #2 (2017) did not enjoy my leg & hit my Lymphatic Hwy 101 & landed in both lungs, so, is a 2nd primary not so good news? For me it wasnt 🙁
                Yes! We see an Onco Monday ill keep ya posted! Im pressed for time!! Somethings gotta give!…
                • September 29, 2018 at 7:00 pm
                lkb
                Participant

                  Standing by to hear how it goes!

                  Lisa

                • September 29, 2018 at 1:42 pm
                Ridingaroundwith27Jennifers
                Participant

                  Hi Lisa,

                  I'm also treated at Dana Farber in Boston.  I'll be in there on Monday afternoon so I might see you around the 5th floor.  My original melanoma was 10 years prior to my stage IV diagnosis so we don't know if it was the original primary or if there was another.  I have a suspect but we didn't bother to look for a primary for the stage IV but just started treatment as soon as we got the positive biopsy.  

                  Good wishes to you 

                  Jennifer

                    • September 29, 2018 at 6:57 pm
                    lkb
                    Participant

                      Thanks, Jenn, for your reply and good wishes. Wow, ten years. That must have come as quite a shock. Should I assume your primary (or another) was visible?  I will be at DFCI Tuesday, so missing you by a day. One of the many reasons I chose Dr. Buchbinder for a 2nd opinion is her thyroid research–particularly pertinent to us on immunotherapy. Thanks again.

                      Lisa

                      • September 29, 2018 at 9:05 pm
                      Ridingaroundwith27Jennifers
                      Participant

                         It was visible and it was a shock after 10 years.  Dr. Buchbinder is definitely wonderful.  She and my team really saved me.  Hoping Tuesday goes well.

                      • September 29, 2018 at 1:55 pm
                      aramat
                      Participant

                        Just wanted to wish you the best…the waiting is one of the hardest things, I think. Hope it turns out to be an easy WLE that takes care of it…

                          • September 29, 2018 at 6:59 pm
                          lkb
                          Participant

                            Thanks, aramat. Waiting–oh yes, the hardest. I'm getting some help with Headspace guided meditations and the practice of looking AT thoughts and not THROUGH them. Not easy, but big reward in those few times I can actually do it. Hope to get better at it.

                            Lisa

                          • September 29, 2018 at 8:09 pm
                          AMcReader
                          Participant

                            I have 4 primaries, the first in 1994 I was 8 years old at the time it was removed), the second in 2010, the third in 2012 and the fourth in 2014. The first one was Clark’s level 4, the additional primaries were all Breslow depth of 0/1. I moved straight to Stage 4 in February of this year and I have to say now I’m just curious which primary was the original cause. It seems unlikely it was the one from 1994…but all the others were so thin and removed easily. I have nothing to offer in terms of advice but wanted to show solidarity. Wishing you good health and happiness!

                              • September 29, 2018 at 11:51 pm
                              lkb
                              Participant

                                Thanks, Amanda. Solidarity's keen–we'll take it! Glad for the shrinking. Sounds like you're about to hit your half-way point with Nivo. Cheering you on.

                                Lisa

                              • September 29, 2018 at 8:14 pm
                              WithinMySkin
                              Participant

                                Hi Lisa! I've never been to Dana Farber, but I've heard amazing things. My team is through Mass General, and if you ever need another opinion, I can't say enough about them. Super responsive and my doc is superb. I've heard a few people on this board talk about multiple primaries, including the amazing Janner, a top contibutor on Stage 0-II melanoma. It's rare but it does happen, and I think the treatment is similar to a first primary. Hopefully Janner can comment with her wisdom.

                                Lauren

                                  • September 30, 2018 at 12:09 am
                                  lkb
                                  Participant

                                    Thanks, Lauren. I'm eager to find out if visible lesions ever respond to Nivo or if it's only mets below the skin. Trying to use the waiting period to generate questions. Glad you have a great team through U Mass. I have every confidence in my UCSF team as well.

                                    Lisa

                                  • October 1, 2018 at 3:34 pm
                                  Janner
                                  Participant

                                    Since this is on the border of a previous WLE, are you sure this isn't a local recurrence of that primary?

                                    I've had 3.  WLE and/or SNB depending on depth is the standard for any primary.  SNB may be debatable if on systemic treatment but that would be a discussion topic. As for whether or not Nivo will affect a new primary, the jury is out I'm sure.  Since only around 10% of the melanoma population ever have more than one primary, it's a smaller subset.  And you never know for sure it's a primary without a biopsy.  Despite being on systemic treatment, I'd opt for the surgical removal.  No need to add another variable and hope the Nivo takes care of it.

                                      • October 2, 2018 at 3:13 am
                                      lkb
                                      Participant

                                        Thank you, Janner! My onc says to give the Nivo a chance to work (I've only had two infusions). I have a 2nd opinion appt tomorrow and will ask if it could be a local recurrence of the original primary and how that answer affects a treatment plan. If they do surgery, it would be my third in one year. 

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