melanoma of unknown origin
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melanoma of unknown origin

› Forums › General Melanoma Community › melanoma of unknown origin

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    • July 14, 2018 at 8:46 pm
    Ginny Richardson
    Participant

    In October of 2017, I found a lump in my groin. It was removed, biopsied and diagnosed as malignant melanoma. More extensive surgery (the groin is an awkward place to have surgery!) removed a chunk of me with nine lymph nodes and four had melanoma. But 5 were OK!! I was tested – PET, MRI. CT and physical exam. They can't find anything, so my diagnosis is "melanoma of unknown origin" which is supposedly quite rare. Anyone out there have this?

    I'm being treated with nivolumab (Opdivo) -monthly infusions, and to date I am experiencing very few side effects. I did end up with mild lymphodema of the left leg, but I don't even wear a compression stocking. At the six month mark, the doctor ordered CT of chest, abdomen and pelvis and all was well.

    So much is unknown. I am afraid it is elsewhere and afraid it will come back. Most of the time I go about my business and kind of forget I have this. I had breast cancer in 2000, and in 2007 I had a totally different kind of cancer in the other breast. So, this is my third cancer. Enough already! Please pray for me. I want to attend my grandsons' weddings. They are 10 and 7 years old.

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      • July 14, 2018 at 10:40 pm
      Bubbles
      Participant

      Actually, melanoma from an "unknown primary" is more common than many oncologists realize, and there are several peeps on this board with that experience.  But…given where you are now…that is sort of water under the bridge.  Sorry for the lymphemdema and prior cancer!!  That's not fun!!  But, it does tell me that you are one tough cookie.  So, it sounds as though you are doing nivo as an adjuvant treatment and you are NED (having "no evidence of disease) currently!  That is great!!!  Immunotherapy (like nivo) is known to work best with the lowest tumor burden.  I took nivo from 12/2010 to 06/2013 after multiple primaries and brain and lung mets.  However, I am still here and NED.  Not sure your grandsons are the marrying types!  Ha!  But, I think you have a great chance of seeing them do whatever it is they choose to do!  I wish you my best.  Celeste

        • July 15, 2018 at 8:17 pm
        Ginny Richardson
        Participant

        Thanks for your comments, Celeste. I sure have a lot to learn. Even had the name wrong. "Unknown primary" is the correct term, as you pointed out. Yeah, grandsons may never marry but you know what I mean… I want to stick around. Thanks again. Ginny

      • July 15, 2018 at 1:44 am
      tedtell1
      Participant

      Hi;

      I was diagnosed in February 2018. I had a large tumor deep in the skin of my left shoulder that was an "unknown primary". What was also weird with my tumor was it was apparently spread through the blood stream, not involving the lymph system at all. I have been super blessed that my melanoma has not shown up anywhere else. I received about four months of Nivo, then developed colitis, but to this point I am still NED! Just dealing with some nasty immuno response side effects and side effects from taking the nasty steroids ….but again, I am NED after a diagnosis of stage IV! So, will take it. So sorry that this is number 3 for you, hoping the Nivo continues to treat you well with minimal issues.

      Ted

       

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