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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
      Becky
      Participant

      I just want you to know, as a mom, my heart hurts for you.  My son Ben was dx with stage 3 July 09. I am hoping the melanoma docs will find a treatment that works for Erik. I know form reading this board that there are lots of people surviving stage 4.

      take care

      Becky

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      Becky
      Participant

      I just want you to know, as a mom, my heart hurts for you.  My son Ben was dx with stage 3 July 09. I am hoping the melanoma docs will find a treatment that works for Erik. I know form reading this board that there are lots of people surviving stage 4.

      take care

      Becky

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      jim Breitfeller
      Participant

      Sorry to hear about your son Erik.

      With the tumor burden so high, your only hope, the way I see it (I am not a Doctor) is if Erik is BRAF positive and is put on BRAF + MEK therapy right away. We need to lower the tumor burden in Erik's body to have a fighting chance.

       

      He also need to get a melanoma specialist and center right way.

       

      Warm regards,

      Jimmy B

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      jim Breitfeller
      Participant

      Sorry to hear about your son Erik.

      With the tumor burden so high, your only hope, the way I see it (I am not a Doctor) is if Erik is BRAF positive and is put on BRAF + MEK therapy right away. We need to lower the tumor burden in Erik's body to have a fighting chance.

       

      He also need to get a melanoma specialist and center right way.

       

      Warm regards,

      Jimmy B

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      I had two lung tumors last spring and three week later I had the pleura effusions also.  they did plueradesis procedure to stop the fluid build up.  The VAT surgeon was blown away because when he did the VAT procedure the tumors in the pleura were not there.  I got into the Roche braf trial by June 14 three weeks after the pluerodesis.  I had immediate reduction of the chest tumors and responded for 9 months.    The new drugs and trials that are out there are extremely encouraging!  I plan on being around a long time with one treatment being followed by another. 

      Surrounding you and your son with love and light,  prayers and blessings,

      Shelly in Swtizerland

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      I had two lung tumors last spring and three week later I had the pleura effusions also.  they did plueradesis procedure to stop the fluid build up.  The VAT surgeon was blown away because when he did the VAT procedure the tumors in the pleura were not there.  I got into the Roche braf trial by June 14 three weeks after the pluerodesis.  I had immediate reduction of the chest tumors and responded for 9 months.    The new drugs and trials that are out there are extremely encouraging!  I plan on being around a long time with one treatment being followed by another. 

      Surrounding you and your son with love and light,  prayers and blessings,

      Shelly in Swtizerland

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      triciad
      Participant

      Kim,

      My heart aches for you and your family.  I am stage 3B, and I know how hard it has been on my family; however, I can't imagine going through this with my son!  Please know you are all in my prayers.  I think Jim said it best; get him on the braf to lower the tumor count.  Then, his body will be stronger to fight.  I'm praying he is Braf positive!!!

      Tricia

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      triciad
      Participant

      Kim,

      My heart aches for you and your family.  I am stage 3B, and I know how hard it has been on my family; however, I can't imagine going through this with my son!  Please know you are all in my prayers.  I think Jim said it best; get him on the braf to lower the tumor count.  Then, his body will be stronger to fight.  I'm praying he is Braf positive!!!

      Tricia

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      THERE IS ALWAYS HOPE….. you must always believe that and make sure that your son lives that 'hope' everyday….   Yes, I agree your situation sux big time, it just doesnt seem fair, and as a mum you must be devastated and feel helpless.  Ive had to watch my mum suffer everyday since i was diagnosed stage IV last july.  January this year, I had that many tumours throughout my whole body including one in my brain, that it seemed like all our prayers, hope and faith had been unanswered…..     until I got a call and it was my turn to get the drug PLX4032.  This was the original BRAF drug, but now there are newer and more effective ones with less side effects.  Anyway, after taking this drug for 8 weeks, my brain tumour has gone and all the tumours in my body have shrunk significantly!!   And I am soooo happy and thankful… yes the side effects are harsh, but im alive :-)  

      So i reccommend that you get your boy to well known melanoma clinic and specialist, and get tested immediately to see if he has the 'braf' gene..   but even if he doesnt, you still cant give up….. MIRACLES HAPPEN EVERYDAY,  NEVER EVER GIVE UP.  love & light, Simone xo 

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      THERE IS ALWAYS HOPE….. you must always believe that and make sure that your son lives that 'hope' everyday….   Yes, I agree your situation sux big time, it just doesnt seem fair, and as a mum you must be devastated and feel helpless.  Ive had to watch my mum suffer everyday since i was diagnosed stage IV last july.  January this year, I had that many tumours throughout my whole body including one in my brain, that it seemed like all our prayers, hope and faith had been unanswered…..     until I got a call and it was my turn to get the drug PLX4032.  This was the original BRAF drug, but now there are newer and more effective ones with less side effects.  Anyway, after taking this drug for 8 weeks, my brain tumour has gone and all the tumours in my body have shrunk significantly!!   And I am soooo happy and thankful… yes the side effects are harsh, but im alive :-)  

      So i reccommend that you get your boy to well known melanoma clinic and specialist, and get tested immediately to see if he has the 'braf' gene..   but even if he doesnt, you still cant give up….. MIRACLES HAPPEN EVERYDAY,  NEVER EVER GIVE UP.  love & light, Simone xo 

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      LynnLuc
      Participant

      Continue to research, flight and hope…one drug may not work for one person and it will for another…I am stage 4 and I have been NED for a year so far and many other people have been NED for many years while even others may have the disease and have remained stable without progression of disease…we don't have a magic wand or cure…but we have hope! More and more of us are living with it these days…

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        kim2712
        Participant

        Thank you to all for your information, and well wishes. We are headed to Cleveland today to meet with a top Melanoma Doc at Cleveland Clinic's Melanoma center tomorrow. Then we see someone at University Hospitals melanoma center Wednesday.

        The doctor that treated him before is at University of Michigans Melanoma center, so we will also see him early next week. The Braf will be one of our first questions. That drug sounds hopeful. The doctor's assistant I spoke with at UH thought that Ipilimumab was too slow acting at this stage for my son. She thought he needed something more aggressive first like high dose interleukin 2.

        I have no idea, we will just have to compare notes and make a decision after we have all the facts.

        Thank you again.

        Kim

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        kim2712
        Participant

        Thank you to all for your information, and well wishes. We are headed to Cleveland today to meet with a top Melanoma Doc at Cleveland Clinic's Melanoma center tomorrow. Then we see someone at University Hospitals melanoma center Wednesday.

        The doctor that treated him before is at University of Michigans Melanoma center, so we will also see him early next week. The Braf will be one of our first questions. That drug sounds hopeful. The doctor's assistant I spoke with at UH thought that Ipilimumab was too slow acting at this stage for my son. She thought he needed something more aggressive first like high dose interleukin 2.

        I have no idea, we will just have to compare notes and make a decision after we have all the facts.

        Thank you again.

        Kim

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      LynnLuc
      Participant

      Continue to research, flight and hope…one drug may not work for one person and it will for another…I am stage 4 and I have been NED for a year so far and many other people have been NED for many years while even others may have the disease and have remained stable without progression of disease…we don't have a magic wand or cure…but we have hope! More and more of us are living with it these days…

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      JerryfromFauq
      Participant

      Howdy, Welcome to our “unwanted to be in” group. We've all been somewhat terrified for either ourselves or a loved one. As to your question, “Is there such a thing as a realistic hope for a Stage Iv melanoma patient?”

      I definitely had that question in March 2007 when I went to stage IV after the GP mis-diagnosed me for 3 ½ years and the local general surgeon slow rolled things after my initial diagnosis in May 2006. In March 2007 a local general Oncologist told me that I had innumerable lung tumors and would have major breathing problems within 30 days and could not expect to survive beyond 6 months. I immediately researched treatments and got to a Melanoma specialist (also was an IL-2 specialist) at UVA.and started IL-2 within weeks.  In April 2008 I moved a daughter to 9652 feet in the Rockies without breathing problems.
      IL-2 is a rough treatment and I wanted to take it while at the best condition I was apt to be in. IL-2 is the only treatment with even a 5% long term success rate (and a 15% partial success rate). I know of people that have been melanoma free for 20 years after having IL-2 as their only treatment for stage IV melanoma.

      The IL-2 held me “essentially stable” for 20 months. Many other treatments have helped some patients. Most treatments have a very low “across the board” success rate. It has now been shown that melanoma is not one problem, but a large number of different tumor DNA mutations that might have occurred.

      Determining which mutation one has is extremely important!

      As Jim brought up, the BRAF trial drugs are the fastest acting to reduce the tumor load IF one has one of the BRAF mutations. One must get a test of tum or material to show this. If one does not have a BRAF mutation, the BRAF drugs have been shown to accelerate tumor growth rate rather than to reduce it. The BRAF drugs are too new to have a long term success rate available currently. They have not even had the Level III clinical trials conducted.

      You did not say what the location and type of his primary tumor was. If it was Mucosal, Acral lentigimous, or on Chronically Sun Damaged (CSD) areas he could have one of the c-kit mutations. There are several targeted drugs under investigation for these tumors. These drugs are mostly FDA approved for other cancers, but for the right subset of melanoma tumor also provide a fast reaction. They have held my melanoma stable for the last two years.

      Ipi is another treatment that is expected to be approved any day for across the board melanoma treatment. Currently it appears to be about on a success level with IL-2 while being easir to take. Each may be effective on different melanoma cases. Hard to tell in advance.

      Charlie, after 14 years with active stage IV melanoma says that, “YES, there is hope!”

      Do a search for “Stage IV Roll Call for the Undead” on here.

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        JerryfromFauq
        Participant
        Yes, one problem with the Ipi is that it takes too long to tell if it may be effective. A targeted drug may well lower the tumor burden to allow sl0wer acting treatments to work later.

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        JerryfromFauq
        Participant
        Yes, one problem with the Ipi is that it takes too long to tell if it may be effective. A targeted drug may well lower the tumor burden to allow sl0wer acting treatments to work later.

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        kim2712
        Participant

        Thanks Jerry!! Wow what a wealth of information you are, and here I thought I was knowledgeable! We just returned home from the cleveland clinic and university hospital in cleveland. Both have mle clinics. We hear the same treatments from both doc but they each had different ways of dealing with the cancer. Koon said to be aggressive right off the bat and start with IL2 to reduce burdon as well as being in the best shape for the treatment, Borden said it made no difference which treatment he started with. Given that Erik has decided to be treated by Borden and will start with a treatment that attacks the blood vessels feeding the tumors as he feels the tumors are bloody. Phase I study of Bevacizumab in combo w/ SU11248

        Basically he said this was up to my son and what my son feels is best for his family. My brother and I are in disagreement with him, though just shared our thoughts without any pressure. We feel the same as Koon, start aggressivly, then turn to other trials.

        It is overwhelming to say the least. Thank you for all your help! Best wishes to you and your fight!!


         

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        kim2712
        Participant

        Thanks Jerry!! Wow what a wealth of information you are, and here I thought I was knowledgeable! We just returned home from the cleveland clinic and university hospital in cleveland. Both have mle clinics. We hear the same treatments from both doc but they each had different ways of dealing with the cancer. Koon said to be aggressive right off the bat and start with IL2 to reduce burdon as well as being in the best shape for the treatment, Borden said it made no difference which treatment he started with. Given that Erik has decided to be treated by Borden and will start with a treatment that attacks the blood vessels feeding the tumors as he feels the tumors are bloody. Phase I study of Bevacizumab in combo w/ SU11248

        Basically he said this was up to my son and what my son feels is best for his family. My brother and I are in disagreement with him, though just shared our thoughts without any pressure. We feel the same as Koon, start aggressivly, then turn to other trials.

        It is overwhelming to say the least. Thank you for all your help! Best wishes to you and your fight!!


         

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      JerryfromFauq
      Participant

      Howdy, Welcome to our “unwanted to be in” group. We've all been somewhat terrified for either ourselves or a loved one. As to your question, “Is there such a thing as a realistic hope for a Stage Iv melanoma patient?”

      I definitely had that question in March 2007 when I went to stage IV after the GP mis-diagnosed me for 3 ½ years and the local general surgeon slow rolled things after my initial diagnosis in May 2006. In March 2007 a local general Oncologist told me that I had innumerable lung tumors and would have major breathing problems within 30 days and could not expect to survive beyond 6 months. I immediately researched treatments and got to a Melanoma specialist (also was an IL-2 specialist) at UVA.and started IL-2 within weeks.  In April 2008 I moved a daughter to 9652 feet in the Rockies without breathing problems.
      IL-2 is a rough treatment and I wanted to take it while at the best condition I was apt to be in. IL-2 is the only treatment with even a 5% long term success rate (and a 15% partial success rate). I know of people that have been melanoma free for 20 years after having IL-2 as their only treatment for stage IV melanoma.

      The IL-2 held me “essentially stable” for 20 months. Many other treatments have helped some patients. Most treatments have a very low “across the board” success rate. It has now been shown that melanoma is not one problem, but a large number of different tumor DNA mutations that might have occurred.

      Determining which mutation one has is extremely important!

      As Jim brought up, the BRAF trial drugs are the fastest acting to reduce the tumor load IF one has one of the BRAF mutations. One must get a test of tum or material to show this. If one does not have a BRAF mutation, the BRAF drugs have been shown to accelerate tumor growth rate rather than to reduce it. The BRAF drugs are too new to have a long term success rate available currently. They have not even had the Level III clinical trials conducted.

      You did not say what the location and type of his primary tumor was. If it was Mucosal, Acral lentigimous, or on Chronically Sun Damaged (CSD) areas he could have one of the c-kit mutations. There are several targeted drugs under investigation for these tumors. These drugs are mostly FDA approved for other cancers, but for the right subset of melanoma tumor also provide a fast reaction. They have held my melanoma stable for the last two years.

      Ipi is another treatment that is expected to be approved any day for across the board melanoma treatment. Currently it appears to be about on a success level with IL-2 while being easir to take. Each may be effective on different melanoma cases. Hard to tell in advance.

      Charlie, after 14 years with active stage IV melanoma says that, “YES, there is hope!”

      Do a search for “Stage IV Roll Call for the Undead” on here.

      Loading spinner
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