Amelanotic hutchibsons freckle
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Amelanotic hutchibsons freckle

› Forums › General Melanoma Community › Amelanotic hutchibsons freckle

  • Post
    • November 25, 2014 at 11:25 am
    Jubes
    Participant

    I have been diagnosed with  stage IV in my lungs and lymph nodes and the doctors can't find the primary. In 2005 I had an amelanotic hutchinsons freckle removed. I had had it on my left upper arm for 2 years and various Drs told me it was nothing until I changed dermatologist. By then it was about two inches diameter        After that I was checked regularly for new melanomas and the dr always checked the glands in my armpits but that was it. Is it possible that I have had this melanoma for the past 10 years? My current oncologist thinks it unlikely that hutchinsons freckle was the primary but just wondering if anyone else had had that type of thing?

    thanks

Viewing 5 reply threads
  • Replies
      • November 25, 2014 at 3:22 pm
      Linny
      Participant

      Sorry to hear of your diagnosis. It's very possible that that could have been the primary. Sam Donaldson, the ABC news anchorman was in a similar situation. He's stage III and at first, doctors could not find his primary either. But they were able to trace it back to a mole he had removed several years prior to his diagnosis.

       

        • November 26, 2014 at 10:28 am
        Jubes
        Participant

        Thanks linny. I hope if it is then that means it's an indolent type 🙂

        • November 26, 2014 at 10:28 am
        Jubes
        Participant

        Thanks linny. I hope if it is then that means it's an indolent type 🙂

        • November 26, 2014 at 10:28 am
        Jubes
        Participant

        Thanks linny. I hope if it is then that means it's an indolent type 🙂

      • November 25, 2014 at 3:22 pm
      Linny
      Participant

      Sorry to hear of your diagnosis. It's very possible that that could have been the primary. Sam Donaldson, the ABC news anchorman was in a similar situation. He's stage III and at first, doctors could not find his primary either. But they were able to trace it back to a mole he had removed several years prior to his diagnosis.

       

      • November 25, 2014 at 3:22 pm
      Linny
      Participant

      Sorry to hear of your diagnosis. It's very possible that that could have been the primary. Sam Donaldson, the ABC news anchorman was in a similar situation. He's stage III and at first, doctors could not find his primary either. But they were able to trace it back to a mole he had removed several years prior to his diagnosis.

       

      • November 26, 2014 at 12:48 am
      arthurjedi007
      Participant

      They never found my primary either. I was stage 4 from day 1 when they found it in my t10 vertebrae. They say since I have the BRAF mutation it is very likely I had it on my skin at some point and the skin just healed it over. My first doc who was not a melanoma specialist even speculated that the mel cells found a weak spot in my spine (ie t10) where I was injured as a kid and could have been there for a long time until something triggered them. I don't think so though. I think I got something on my skin the summer of 2012 and started having issue in Oct 2012 and kept getting misdiagnosed until June 2013 and yeah what was on my skin had healed over. Never will know for sure and in the scheme of things and treatments it doesn't really matter for me.

      Artie

        • November 26, 2014 at 10:35 am
        Jubes
        Participant

        Thanks Artie  my dr said we all have melanoma cells from day one. It's the trigger that makes them grow and multiply that is the danger. That's interesting that u have the braf mutation. I don't so the dabrafenib did not work for me. Did you do a course of that? Did it work? Mine made it worse so they took me off it after two weeks but the pembrolizumab seems good so far 

        • November 30, 2014 at 5:09 pm
        arthurjedi007
        Participant

        Even with the braf mutation the zelboraf and the tafinlar/mekenist did nothing good for me. Well the tafinlar/mekenist did keep most things from growing for a couple months but new stuff was showing up and other stuff grew like crazy. Yervoy did nothing either. Really the only thing that has done me any good is the pembro and radiation.

        Artie

         

        • November 30, 2014 at 5:09 pm
        arthurjedi007
        Participant

        Even with the braf mutation the zelboraf and the tafinlar/mekenist did nothing good for me. Well the tafinlar/mekenist did keep most things from growing for a couple months but new stuff was showing up and other stuff grew like crazy. Yervoy did nothing either. Really the only thing that has done me any good is the pembro and radiation.

        Artie

         

        • November 30, 2014 at 5:09 pm
        arthurjedi007
        Participant

        Even with the braf mutation the zelboraf and the tafinlar/mekenist did nothing good for me. Well the tafinlar/mekenist did keep most things from growing for a couple months but new stuff was showing up and other stuff grew like crazy. Yervoy did nothing either. Really the only thing that has done me any good is the pembro and radiation.

        Artie

         

        • November 26, 2014 at 10:35 am
        Jubes
        Participant

        Thanks Artie  my dr said we all have melanoma cells from day one. It's the trigger that makes them grow and multiply that is the danger. That's interesting that u have the braf mutation. I don't so the dabrafenib did not work for me. Did you do a course of that? Did it work? Mine made it worse so they took me off it after two weeks but the pembrolizumab seems good so far 

        • November 26, 2014 at 10:35 am
        Jubes
        Participant

        Thanks Artie  my dr said we all have melanoma cells from day one. It's the trigger that makes them grow and multiply that is the danger. That's interesting that u have the braf mutation. I don't so the dabrafenib did not work for me. Did you do a course of that? Did it work? Mine made it worse so they took me off it after two weeks but the pembrolizumab seems good so far 

      • November 26, 2014 at 12:48 am
      arthurjedi007
      Participant

      They never found my primary either. I was stage 4 from day 1 when they found it in my t10 vertebrae. They say since I have the BRAF mutation it is very likely I had it on my skin at some point and the skin just healed it over. My first doc who was not a melanoma specialist even speculated that the mel cells found a weak spot in my spine (ie t10) where I was injured as a kid and could have been there for a long time until something triggered them. I don't think so though. I think I got something on my skin the summer of 2012 and started having issue in Oct 2012 and kept getting misdiagnosed until June 2013 and yeah what was on my skin had healed over. Never will know for sure and in the scheme of things and treatments it doesn't really matter for me.

      Artie

      • November 26, 2014 at 12:48 am
      arthurjedi007
      Participant

      They never found my primary either. I was stage 4 from day 1 when they found it in my t10 vertebrae. They say since I have the BRAF mutation it is very likely I had it on my skin at some point and the skin just healed it over. My first doc who was not a melanoma specialist even speculated that the mel cells found a weak spot in my spine (ie t10) where I was injured as a kid and could have been there for a long time until something triggered them. I don't think so though. I think I got something on my skin the summer of 2012 and started having issue in Oct 2012 and kept getting misdiagnosed until June 2013 and yeah what was on my skin had healed over. Never will know for sure and in the scheme of things and treatments it doesn't really matter for me.

      Artie

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