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Stage 3b maybe- Nivo or not? Benefits? Questions to ask? Your experience…

Forums General Melanoma Community Stage 3b maybe- Nivo or not? Benefits? Questions to ask? Your experience…

  • Post
    Mary B
    Participant
    My close family member has nodular melanoma. Breslow 1/17, Clark IV, Ulceration Not id. Margins Not involved. Micro satellites not identified. Mitotic 2/2. Tumor infiltrating lymphocytes presetn. Tumor regression present. Had surgery and removed the full lesion from shin. Lymph nodes negative after SLNB.  Doctor is upstaging to 3b as micro satellites/in transit because of the post-biopsy picture. Unfortunately we don’t have a pre-biopsy photo. But post-biopsy clearly shows the biopsy site and a centimeter or so of nice healthy looking skin separating the biopsy and a dark lesion. The question is is the lesion part of the primary (with regression between the two) or is it a micro? The Doctor is leaning toward micro and so is upstaging. Has now suggest Nivo. Does anyone on this site have any experience with 3b with no lymph node involvement? Did you use Nivo?  For how long? Any thoughts on the upstaging? We are really new at this. Any helpful experience, resources, welcome. Thank you and wishing all of you all the very best.

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  • Replies
      Bubbles
      Participant
      Hi Mary,

      I am sorry your family member is dealing with a diagnosis of melanoma.  Here is an excellent full explanation of stage IIIb staging:

      https://www.curemelanoma.org/about-melanoma/melanoma-staging/stage-3/

      Treating melanoma when all obvious tumor has been removed is termed “adjuvant” treatment.  Many of us here have done very well (even when Stage IV!!!) utilizing that sort of care.  Nivolumab (Opdivo) is often used in this manner for Stage III patients.  Targeted therapy, if the patient’s tumor is BRAF positive, using a combo of a BRAF and MEK inhibitor may also be used.

      Here is a a post I created to explain current melanoma treatments generally that you might find helpful:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

      Here are a zillion posts on adjuvant care specifically (the first one includes multiple links):  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant

      Hope this helps.  Ask more questions as you have the need.  Wishing your friend my best.  celeste

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      Mark_DC
      Participant
      Dear Mary,

      I am sorry for your family member and you and your family too.

      My case has been somewhat similar – on my lower left leg, Stage II in 2014 (had to check the dates!), surgery to remove; recurrence lower left leg Stage III early 2016, surgery to remove; took ipi; recurrence August 2016; pembro for one year (slow progression but no spread), then pembro + TVEC 2017-18: seems to have worked. Like your friend, I dont think it ever spread to my lymph nodes (although they only tested this at the time of my two surgeries, but lymph node examinations dont suggest anything is there), so in that way I have been lucky like your friend.

      From what you wrote, I sense that they have found a new lesion that is still there. So that might mean that you could try immunotherapy now as a precursor to surgery (so called neo adjuvant approach) rather than surgery first and then immunotherapy to defend against a recurrence (adjuvant). I would try neo adjuvant if it;s possible – having the tumour there gives the immunotherapy something to attack and if it shrinks the tumour then surgery may be easier. or you may be lucky and the tumour disappears.

      For regional metastasis and low tumour burden I do think adding TVEC or some other intralesional might be a good idea, adding this to pembro – this gave the pembro an extra kick in my case and I think I lucked out after years of going sideways. Prayer and friends helped too!

      This is a great forum (used to be better before the redesign!), and bubbles who answered (and her website) is one of our best resources together with Ed and Melwave and many others (cannot mention all names sorry) who can share their experiences and give advice. They have helped me!!

      My hope for your friend is that if it stays regional maybe the prognosis in the end can be good. From my similar experience, Pembro plus TVEC may be a good approach with surgery if needed.

       

      Good luck

      Mark

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