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Metastic Melanoma of lung Unknown Primary Question
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Metastic Melanoma of lung Unknown Primary Question

› Forums › General Melanoma Community › Metastic Melanoma of lung Unknown Primary Question

  • Post
    • October 23, 2017 at 1:48 am
    Whitey
    Participant

      My husbands lung cancer was first diagnosed in Feb. 2017.  After many tests, dr's ect. the lower part of my left lung was removed.  Diagnosis was Metastic Melanoma Unknown Primary.  Onc. was going to treat with Immunotherapy but then called to say Medicare would not pay for the treatments because since they can't find the primary source and they removed the melanoma part of the lung my husband was considered "cancer free".

      It would seem to me that if there had to be a primary then it is there somewhere hiding and treatment would possibly get rid of it.

      I don't like the idea of wait and see if it comes back somewhere else.  It didn't go anywhere, just the metastisized melanoma was removed.

      I am so worried for him.

       

       

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    • Replies
        • October 23, 2017 at 1:50 am
        Whitey
        Participant

          Sorry, husband is Whitey, I am just trying to help him.  His lower left lung was removed not mine.

           

          • October 23, 2017 at 4:14 am
          Bubbles
          Participant

            I am sorry for what you and your husband are going through.  It sounds as though your husband is NED….having "no evidence of disease".  In melanoma world, this is a good thing.  However, I understand your concern.  We have long been pushing for adjuvant treatment for such patients.  Here is a post regarding such treatments:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/adjuvant-treatments-in-melanoma-they.html  

            Despite all that we have learned, it is still hard to gain access to these therapies.  Be sure that your husband is seeing a melanoma specialist that will advocate (fight with insurance) for your husband.  Also, I recommend that you make sure that testing, esp BRAF status, be done on the tumor that was removed…if not for use now…then so that you will have that knowledge in the future should you need it.

            If all this is a foreign language….I understand.  Here is a melanoma primer, if you will, that I recently put together:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

            Hang in there.  Your husband is lucky to have you.  Ask more questions as you need.  This forum has a wealth of incredible folks with information and support.  I wish you both well.  Celeste

            • October 23, 2017 at 1:42 pm
            kst
            Participant

              Adjuvant therapy with Opdivo or Dabrafenib/MEK for fully resected stage 3B through Stage 4 is now available according to my doctor.  After discussions on both last Friday he advised going the Opdivo route.  Treatment scheduled to start November 1.

              WLE and SNLB June 2017-CLND July 2017 (4 nodes micro stage 3c) Adjuvant HD Radiation August-September 2017. Clean scans 10/20/17

              • October 31, 2017 at 8:10 pm
              melanomafighter
              Participant

                I too had Melanoma land in a lymph node and have an unknown primary.  The doctors have never found it on my skin or anywhere else.  I did take interferron to prevent spread of it going anywhere else microscopic and so far it has worked.  7 years, I agree he probably needs some other form besides the surgery itself to prevent it from spreading.

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