Stage IV Metastatic Malignant Melanoma

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    • February 17, 2015 at 2:30 pm
    Choosejoy1
    Participant

      My husband(45 yrs old) was diagnosed with Stage IIIa Melanoma in October 2013. Wide excision on left shoulder followed by lymph node removal in armpit area. 16 months NED. 1/15 found lump above collarbone. Surgery. Metastatic Melanoma. Surgeon indicated change in stage to IV. Visited Mayo yesterday. Dr said we could call it Stage III OR Stage IV as although it had metastasized, it was on the same side as the orginal occurance so it was a better prognosis. Still NED. Has anyone experienced this? We go back on Friday (5 hour drive) for a consult with the Oncology Radiologist for possible radiation of the immediate area. Three options after that. Leukine or two clinical trials. Any advice/experience would be appreciated.

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        • February 17, 2015 at 11:53 pm
        Bubbles
        Participant

          I suspect that your onc is trying to decide if your husband experienced a met or a second primary.  My best advice is that, if you aren't already, be sure that you are in the care of a melanoma specialist.  General oncologists can be great people.  But, melanoma is a sneaky beast and unless you take care of folks with it on a daily basis, the doc may not be well versed on all its tricks as well as the latest treatment options.  There are NED trials available.  I participated in one myself.  Staging is important as some require one level are another for participation.  As far as I know, Moffitt, in Tampa, FL is still enrolling NED patients for an nivo/ipi (now with brand names opdivo and yervoy) combo.  But, things change quickly so I would call them for additional information if you are interested.  I was diagnosed with a skin lesion and a positive node in 2003.  I had a second skin lesion on my opposite arm, all nodes negative in 2007.  It was deemed a second primary.  In 2010, I developed lung, brain and tonsillar mets.  All were removed by surgery or SRS in case of the brain met, rendering me NED.  I joined a nivo trial in 2010 and remain NED.  Hope that helps.  I wish you my best.  Celeste

          • February 17, 2015 at 11:53 pm
          Bubbles
          Participant

            I suspect that your onc is trying to decide if your husband experienced a met or a second primary.  My best advice is that, if you aren't already, be sure that you are in the care of a melanoma specialist.  General oncologists can be great people.  But, melanoma is a sneaky beast and unless you take care of folks with it on a daily basis, the doc may not be well versed on all its tricks as well as the latest treatment options.  There are NED trials available.  I participated in one myself.  Staging is important as some require one level are another for participation.  As far as I know, Moffitt, in Tampa, FL is still enrolling NED patients for an nivo/ipi (now with brand names opdivo and yervoy) combo.  But, things change quickly so I would call them for additional information if you are interested.  I was diagnosed with a skin lesion and a positive node in 2003.  I had a second skin lesion on my opposite arm, all nodes negative in 2007.  It was deemed a second primary.  In 2010, I developed lung, brain and tonsillar mets.  All were removed by surgery or SRS in case of the brain met, rendering me NED.  I joined a nivo trial in 2010 and remain NED.  Hope that helps.  I wish you my best.  Celeste

            • February 17, 2015 at 11:53 pm
            Bubbles
            Participant

              I suspect that your onc is trying to decide if your husband experienced a met or a second primary.  My best advice is that, if you aren't already, be sure that you are in the care of a melanoma specialist.  General oncologists can be great people.  But, melanoma is a sneaky beast and unless you take care of folks with it on a daily basis, the doc may not be well versed on all its tricks as well as the latest treatment options.  There are NED trials available.  I participated in one myself.  Staging is important as some require one level are another for participation.  As far as I know, Moffitt, in Tampa, FL is still enrolling NED patients for an nivo/ipi (now with brand names opdivo and yervoy) combo.  But, things change quickly so I would call them for additional information if you are interested.  I was diagnosed with a skin lesion and a positive node in 2003.  I had a second skin lesion on my opposite arm, all nodes negative in 2007.  It was deemed a second primary.  In 2010, I developed lung, brain and tonsillar mets.  All were removed by surgery or SRS in case of the brain met, rendering me NED.  I joined a nivo trial in 2010 and remain NED.  Hope that helps.  I wish you my best.  Celeste

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