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Son just diagnosed stage iv

Forums General Melanoma Community Son just diagnosed stage iv

  • Post
    kim2712
    Participant

    My son Erik was diagnosed with stage 3 melanoma in 2004. He did one year of high dose Interferon.  He has done well since then. On March 7th his lung collapsed 100%. He had been having pain and shortness of breath a few days prior to this. They put a chest tube in from the top of his lung to drain fluid and try to keep lung inflated. After a week of this, a thoracic surgeon was called in and decided he needed surgery to put the larger drain tube in at the bottom of the lung. They did this Monday morning, the 14th.

    My son Erik was diagnosed with stage 3 melanoma in 2004. He did one year of high dose Interferon.  He has done well since then. On March 7th his lung collapsed 100%. He had been having pain and shortness of breath a few days prior to this. They put a chest tube in from the top of his lung to drain fluid and try to keep lung inflated. After a week of this, a thoracic surgeon was called in and decided he needed surgery to put the larger drain tube in at the bottom of the lung. They did this Monday morning, the 14th. After 2 agonizing hours the surgeon met us in a private room and just said I'm sorry, it's bad. His right lung, pleural area, chest cavity and chest wall is full of malignant melanoma tumors, hundreds of them he said. Resection was not an option. We are heading to the Cleveland Clinic Tuesday and University Hospital in Cleveland on Wednesday to see the melanoma guru's at both places. We are in Toledo.

    My question…is there realistically any hope?

    Thank you from a terrified mom

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  • Replies
      jrami3
      Participant

      I am so sorry for the pain you are going through. I can't offer any advice, or prognosis, as I am newly diagnosed myself, but my thoughts and prayers are with you and your travels this week..

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      jrami3
      Participant

      I am so sorry for the pain you are going through. I can't offer any advice, or prognosis, as I am newly diagnosed myself, but my thoughts and prayers are with you and your travels this week..

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      LizzM
      Participant

      I am so sorry to hear about your son's latest challenge. This disease is so sneaky and can hide for years and then pop up unannounced. There is always hope. Make sure he is seeing a melanoma specialist at a Comprehensive Cancer Center. How old is your son?

      Please let us know how he is doing.

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      LizzM
      Participant

      I am so sorry to hear about your son's latest challenge. This disease is so sneaky and can hide for years and then pop up unannounced. There is always hope. Make sure he is seeing a melanoma specialist at a Comprehensive Cancer Center. How old is your son?

      Please let us know how he is doing.

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      dian in spokane
      Participant

      yes.. there is always reason to hope. And, I mean..as a MOM, what choice do have ? Hope, or complete terror?

      there have been some big things happening with treatment these last few years, notably, the BRAF drugs and Ipi.

      We've seen some great turnarounds here with Ipi, and hopefully this will work for your son.

      It sounds like your son is young and strong besides this, and so the docs will work towards using the most agressive treatment possible.

      Gather your friends and family around you to give you strength, and good luck getting through this. I hope and pray that your son responds quickly to treatment

      Dian in spokane

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      dian in spokane
      Participant

      yes.. there is always reason to hope. And, I mean..as a MOM, what choice do have ? Hope, or complete terror?

      there have been some big things happening with treatment these last few years, notably, the BRAF drugs and Ipi.

      We've seen some great turnarounds here with Ipi, and hopefully this will work for your son.

      It sounds like your son is young and strong besides this, and so the docs will work towards using the most agressive treatment possible.

      Gather your friends and family around you to give you strength, and good luck getting through this. I hope and pray that your son responds quickly to treatment

      Dian in spokane

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      Peter L
      Participant

      I would say yes, realistically there is hope.  a few years ago it would be alot tougher with your son's condition.  The thing with Melanoma is that it is a malignancy for which they have not been able to find any decent treatment for Stage IV cases…such as Erik's.  This has changed over the last few years though as they have finally started to make what appears to be real progress in treatment of Stage IV Melanoma.  Ipiulimubab and B-raf are the 2 latest buzzes. In my opinion, the thing you MUST do is GET YOUR SON TO A MAJOR MELANOMA CENTER….they are the ones who understand this disease and lead the research I'm talking about.  DO NOT settle for anything less than a specialist. My impression in dealing with this disease on and off for 10 years is that many 'every-day-general-hospitals' who don't see Melanoma cases everyday are really pretty clueless and will do more harm than good….they'll say something like.."well there's nothing to be done ..sorry…good luck ""  stay away from these places from the get-go. The other thing they might do is start you off with either the wrong treatment or the old treatments from the past that don't work.  Either way, wasting time and limiting the ability to get the best results from the correct treatment options.  So, it's important to get it right from the get-go because the other thing about Melanome is that you don't get alot of 2nd chances if you mess up in the treatments used.  If you want to talk more about my history or why I'm such a maniac in my convictions on this, feel free to email me.  hope this helps.   Peter

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      Peter L
      Participant

      I would say yes, realistically there is hope.  a few years ago it would be alot tougher with your son's condition.  The thing with Melanoma is that it is a malignancy for which they have not been able to find any decent treatment for Stage IV cases…such as Erik's.  This has changed over the last few years though as they have finally started to make what appears to be real progress in treatment of Stage IV Melanoma.  Ipiulimubab and B-raf are the 2 latest buzzes. In my opinion, the thing you MUST do is GET YOUR SON TO A MAJOR MELANOMA CENTER….they are the ones who understand this disease and lead the research I'm talking about.  DO NOT settle for anything less than a specialist. My impression in dealing with this disease on and off for 10 years is that many 'every-day-general-hospitals' who don't see Melanoma cases everyday are really pretty clueless and will do more harm than good….they'll say something like.."well there's nothing to be done ..sorry…good luck ""  stay away from these places from the get-go. The other thing they might do is start you off with either the wrong treatment or the old treatments from the past that don't work.  Either way, wasting time and limiting the ability to get the best results from the correct treatment options.  So, it's important to get it right from the get-go because the other thing about Melanome is that you don't get alot of 2nd chances if you mess up in the treatments used.  If you want to talk more about my history or why I'm such a maniac in my convictions on this, feel free to email me.  hope this helps.   Peter

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      Nancylee
      Participant

      On Kim, I havent posted here in over a year. I am so so sorry. I do not know how good Cleveland clinic in on Melamona but I know the Uof Michigan are pretty big. Was your  thoracic  Surgeon Mike Morrant? He can get you lif flighted into U OF M or Cleveland clinic. Just ask for it! Is there anything I can do for you?

      Nancy Youssef, Sylvania ohio

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        kim2712
        Participant

        Hi Nancy,

        I remember you from 5 years ago when Erik was dx. We live in Sylvania also. He was initially treated at U of M back then. He did the Interferon with Dr. Redman. Erik's insurance stopped him from being able to go there.

        His thoracic surgeon was Roquwal. I really liked him.

        Hope you are doing well…this disease in just awful!

        Kim

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        kim2712
        Participant

        Hi Nancy,

        I remember you from 5 years ago when Erik was dx. We live in Sylvania also. He was initially treated at U of M back then. He did the Interferon with Dr. Redman. Erik's insurance stopped him from being able to go there.

        His thoracic surgeon was Roquwal. I really liked him.

        Hope you are doing well…this disease in just awful!

        Kim

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      Nancylee
      Participant

      On Kim, I havent posted here in over a year. I am so so sorry. I do not know how good Cleveland clinic in on Melamona but I know the Uof Michigan are pretty big. Was your  thoracic  Surgeon Mike Morrant? He can get you lif flighted into U OF M or Cleveland clinic. Just ask for it! Is there anything I can do for you?

      Nancy Youssef, Sylvania ohio

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