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Young male diagnosed with stage 4 liver melanoma…No primary

Forums Ocular Melanoma Community Young male diagnosed with stage 4 liver melanoma…No primary

  • Post
    Mamasarah
    Participant

    My brother was diagnosed with stage 4 melanonma on 8.22.14.  No primary.  He just completed his second round of IL2 at Providenve in Portland, Oregon and is awaiting a scan to find out if it is working.  This waiting is proving to be harder than the treatment itslef… Anxiety is high and any positive/ success stories for young males who have dealt with this will help our family get through this next week.  He is an otherwise healthy 37 year old male.  Started to have stomach/side discomfort in August 2014 and found out it was due to melanoma.  He does also have lesions on the pancreas and his eyes.   No brain mets.  Not ocular melanoma. Can anybody relate and share? 

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  • Replies
      casagrayson
      Participant

      I don't have any experience to share in this situation — just wanted to give you a virtual hug. The anxiety can be crippling. If your brother doesn't have something to take for the anxiety, he should.  His body needs all his energy to be focused on healing, not worry.  As for the family, just remember that worrying is not going to change the outcome, but it can damage relationships.  Try to focus on things you can control, not the things you can't.  Easier said than done, I know!

       

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        Mamasarah
        Participant

        Thank you Susan.  

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        Mamasarah
        Participant

        Thank you Susan.  

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        Mamasarah
        Participant

        Thank you Susan.  

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      casagrayson
      Participant

      I don't have any experience to share in this situation — just wanted to give you a virtual hug. The anxiety can be crippling. If your brother doesn't have something to take for the anxiety, he should.  His body needs all his energy to be focused on healing, not worry.  As for the family, just remember that worrying is not going to change the outcome, but it can damage relationships.  Try to focus on things you can control, not the things you can't.  Easier said than done, I know!

       

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      casagrayson
      Participant

      I don't have any experience to share in this situation — just wanted to give you a virtual hug. The anxiety can be crippling. If your brother doesn't have something to take for the anxiety, he should.  His body needs all his energy to be focused on healing, not worry.  As for the family, just remember that worrying is not going to change the outcome, but it can damage relationships.  Try to focus on things you can control, not the things you can't.  Easier said than done, I know!

       

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      JoshF
      Participant

      I was stage 3 no primary…good to go for 2.5 years and bam!…stage 4 with mets to lungs. So I can speak to the IL-2 and most of us can relate to the anxiety. I know this is especially hard when your brother is going through treatment and has a pending scan. It can be crushing and I really wish I could tell you all how to make it go away…just breathe, relax and take it a day at a time. There's always hope. 

      As for the IL-2….rough stuff but if it works, results can be promising and for a long time. I did yervoy and then 2 courses of IL-2 so I'm not really sure if it's one or both drugs that put me in remission for past 10 months. That's part of my anxiety…which drug worked…will it be a sustained remission. Only time will tell. So us as melanoma patients, survivors and warriors all have the invisible scars of going through this…and we're all sorry your brother had to join us. One thing I can tell you is the people here are salt of the earth and highly supportive. They've taken me through a lot and I'm confident they will support your family as well. 

      Wishing you the best!

      Josh

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      JoshF
      Participant

      I was stage 3 no primary…good to go for 2.5 years and bam!…stage 4 with mets to lungs. So I can speak to the IL-2 and most of us can relate to the anxiety. I know this is especially hard when your brother is going through treatment and has a pending scan. It can be crushing and I really wish I could tell you all how to make it go away…just breathe, relax and take it a day at a time. There's always hope. 

      As for the IL-2….rough stuff but if it works, results can be promising and for a long time. I did yervoy and then 2 courses of IL-2 so I'm not really sure if it's one or both drugs that put me in remission for past 10 months. That's part of my anxiety…which drug worked…will it be a sustained remission. Only time will tell. So us as melanoma patients, survivors and warriors all have the invisible scars of going through this…and we're all sorry your brother had to join us. One thing I can tell you is the people here are salt of the earth and highly supportive. They've taken me through a lot and I'm confident they will support your family as well. 

      Wishing you the best!

      Josh

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      JoshF
      Participant

      I was stage 3 no primary…good to go for 2.5 years and bam!…stage 4 with mets to lungs. So I can speak to the IL-2 and most of us can relate to the anxiety. I know this is especially hard when your brother is going through treatment and has a pending scan. It can be crushing and I really wish I could tell you all how to make it go away…just breathe, relax and take it a day at a time. There's always hope. 

      As for the IL-2….rough stuff but if it works, results can be promising and for a long time. I did yervoy and then 2 courses of IL-2 so I'm not really sure if it's one or both drugs that put me in remission for past 10 months. That's part of my anxiety…which drug worked…will it be a sustained remission. Only time will tell. So us as melanoma patients, survivors and warriors all have the invisible scars of going through this…and we're all sorry your brother had to join us. One thing I can tell you is the people here are salt of the earth and highly supportive. They've taken me through a lot and I'm confident they will support your family as well. 

      Wishing you the best!

      Josh

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      Frank Two
      Participant

      I joined this forum yesterday on behalf of my husband. With one single post I received so much information and support. You came to the right place. I don't have anything to share but I wanted you to know that your brother, you and your family will be in our thoughts and prayers. Be strong. 

      Paula Anne and Frank

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      Frank Two
      Participant

      I joined this forum yesterday on behalf of my husband. With one single post I received so much information and support. You came to the right place. I don't have anything to share but I wanted you to know that your brother, you and your family will be in our thoughts and prayers. Be strong. 

      Paula Anne and Frank

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      Frank Two
      Participant

      I joined this forum yesterday on behalf of my husband. With one single post I received so much information and support. You came to the right place. I don't have anything to share but I wanted you to know that your brother, you and your family will be in our thoughts and prayers. Be strong. 

      Paula Anne and Frank

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      JerryfromFauq
      Participant

      I went to stage IV 8 months after diagnosis.  Had innumerable lung tumors and some to the liver.  I jumped on to IL-2. ( had 49 bags over 20 m0nths.)   It stopped the liver tumors (apperently killed them.) and held the innumeraable lung tumors stable for 20 months, before the lung tumors restarted their growth.  The liver tumors have never started regrowing. 

      I know people that had extensive Stage IV Melanoma over 30 years ago and with only IL-2 as their only Stage IV treatment are still NED.  *Yeah I know it has only been FDA approved for melanoma since the late 1990's.)

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      JerryfromFauq
      Participant

      I went to stage IV 8 months after diagnosis.  Had innumerable lung tumors and some to the liver.  I jumped on to IL-2. ( had 49 bags over 20 m0nths.)   It stopped the liver tumors (apperently killed them.) and held the innumeraable lung tumors stable for 20 months, before the lung tumors restarted their growth.  The liver tumors have never started regrowing. 

      I know people that had extensive Stage IV Melanoma over 30 years ago and with only IL-2 as their only Stage IV treatment are still NED.  *Yeah I know it has only been FDA approved for melanoma since the late 1990's.)

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      JerryfromFauq
      Participant

      I went to stage IV 8 months after diagnosis.  Had innumerable lung tumors and some to the liver.  I jumped on to IL-2. ( had 49 bags over 20 m0nths.)   It stopped the liver tumors (apperently killed them.) and held the innumeraable lung tumors stable for 20 months, before the lung tumors restarted their growth.  The liver tumors have never started regrowing. 

      I know people that had extensive Stage IV Melanoma over 30 years ago and with only IL-2 as their only Stage IV treatment are still NED.  *Yeah I know it has only been FDA approved for melanoma since the late 1990's.)

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