Stage IV question
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Stage IV question

› Forums › General Melanoma Community › Stage IV question

  • Post
    • October 1, 2013 at 3:16 am
    Judy D
    Participant
    Anyone not on any treatment plan having been diagnosed stage IV? The reason I’m asking is because I’m stage IV with NED for the last 6 months. I was on Zelboraff but my Dr took me off because of the extreme photosensitive issues I was having. I am going to begin new drug soon but wondering if we will ever be free of treatment
    I am so thankful and blessed to be in the situation I’m in now. I just believe we can never give up
Viewing 11 reply threads
  • Replies
      • October 1, 2013 at 3:42 am
      DeniseK
      Participant

      Hi Judy,

      I am currently stage IV and have been on some type of treatment for almost a year now.  I am currently taking Mek/Dabrafenib combo and seeing great results.  I can only dream of a day where I don't have to take any type of treatment.  I think there are people out there that have been on NO treatment because something they did has made them NED and have had continued success.  I've heard of people doing IL-2 and IPI and doing nothing now because they totally responded to that particular treatment.  

      So there is hope that some form of treatment you do will keep you NED after you finish.  I really hope they find a cure for us and we can live normal lives again!!  🙂

      Curious of what they are switching you to?

      All my best to you,

      Denise

        • October 1, 2013 at 12:31 pm
        Judy D
        Participant
        I too will be going on just Dabrafenib. They felt this would be the best way to go for now. I pray that some day there will be an absolute cure for this beast and we will all live to be be old and healthy.
        • October 1, 2013 at 12:31 pm
        Judy D
        Participant
        I too will be going on just Dabrafenib. They felt this would be the best way to go for now. I pray that some day there will be an absolute cure for this beast and we will all live to be be old and healthy.
        • October 1, 2013 at 12:31 pm
        Judy D
        Participant
        I too will be going on just Dabrafenib. They felt this would be the best way to go for now. I pray that some day there will be an absolute cure for this beast and we will all live to be be old and healthy.
      • October 1, 2013 at 3:42 am
      DeniseK
      Participant

      Hi Judy,

      I am currently stage IV and have been on some type of treatment for almost a year now.  I am currently taking Mek/Dabrafenib combo and seeing great results.  I can only dream of a day where I don't have to take any type of treatment.  I think there are people out there that have been on NO treatment because something they did has made them NED and have had continued success.  I've heard of people doing IL-2 and IPI and doing nothing now because they totally responded to that particular treatment.  

      So there is hope that some form of treatment you do will keep you NED after you finish.  I really hope they find a cure for us and we can live normal lives again!!  🙂

      Curious of what they are switching you to?

      All my best to you,

      Denise

      • October 1, 2013 at 3:42 am
      DeniseK
      Participant

      Hi Judy,

      I am currently stage IV and have been on some type of treatment for almost a year now.  I am currently taking Mek/Dabrafenib combo and seeing great results.  I can only dream of a day where I don't have to take any type of treatment.  I think there are people out there that have been on NO treatment because something they did has made them NED and have had continued success.  I've heard of people doing IL-2 and IPI and doing nothing now because they totally responded to that particular treatment.  

      So there is hope that some form of treatment you do will keep you NED after you finish.  I really hope they find a cure for us and we can live normal lives again!!  🙂

      Curious of what they are switching you to?

      All my best to you,

      Denise

      • October 1, 2013 at 4:09 am
      JerryfromFauq
      Participant

      IL-2 is the  only thing I know of that has kept people NED long enough to not have them considering other  treatments.  There is hope  that both Yervoy and PD-1 will provide this for some people.   That will take  years before it is leaarned if that is truly to happen.  It  is doubtful  that within the next ten yearss  that we  will not be looking closely at  what is happeing in our bodies with all other treatments.  At least IL-2 doesn't keep people  on treatments for negative side efferts  for years after reaching NED for it's "complete responders".  Of course how much can I say, I've been stage IV for over 6 1/6 years aand nnot been NED during this time!

        • October 1, 2013 at 12:35 pm
        Judy D
        Participant
        Thank you for your response. I hope that you too will one day get to hear the words NED! But we are all so thankful for these new drugs that have had such great success. I have been battling this beast for 16 years and I don’t plan on letting it win!
        • October 1, 2013 at 12:35 pm
        Judy D
        Participant
        Thank you for your response. I hope that you too will one day get to hear the words NED! But we are all so thankful for these new drugs that have had such great success. I have been battling this beast for 16 years and I don’t plan on letting it win!
        • October 1, 2013 at 12:35 pm
        Judy D
        Participant
        Thank you for your response. I hope that you too will one day get to hear the words NED! But we are all so thankful for these new drugs that have had such great success. I have been battling this beast for 16 years and I don’t plan on letting it win!
      • October 1, 2013 at 4:09 am
      JerryfromFauq
      Participant

      IL-2 is the  only thing I know of that has kept people NED long enough to not have them considering other  treatments.  There is hope  that both Yervoy and PD-1 will provide this for some people.   That will take  years before it is leaarned if that is truly to happen.  It  is doubtful  that within the next ten yearss  that we  will not be looking closely at  what is happeing in our bodies with all other treatments.  At least IL-2 doesn't keep people  on treatments for negative side efferts  for years after reaching NED for it's "complete responders".  Of course how much can I say, I've been stage IV for over 6 1/6 years aand nnot been NED during this time!

      • October 1, 2013 at 4:09 am
      JerryfromFauq
      Participant

      IL-2 is the  only thing I know of that has kept people NED long enough to not have them considering other  treatments.  There is hope  that both Yervoy and PD-1 will provide this for some people.   That will take  years before it is leaarned if that is truly to happen.  It  is doubtful  that within the next ten yearss  that we  will not be looking closely at  what is happeing in our bodies with all other treatments.  At least IL-2 doesn't keep people  on treatments for negative side efferts  for years after reaching NED for it's "complete responders".  Of course how much can I say, I've been stage IV for over 6 1/6 years aand nnot been NED during this time!

      • October 2, 2013 at 10:20 am
      Rocco
      Participant

      Hi – I was dx Stage IV in Aug 2005, multiple surgeries and treatments and then went on Ipi (MDX-010 trial), was an IPI responder and went NED in Feb 2009, stopped Ipi due to some side effects and have received no treatments since for mel since.  Was on high dose steroids after Ipi to reduce all side effects, but that's it..  Was followed up with scans every 3 months until mid-2012 when we moved to every 6 months for scans…

      – Rocco

      PS- Luke 1:37 is a favorite of mine

      • October 2, 2013 at 10:20 am
      Rocco
      Participant

      Hi – I was dx Stage IV in Aug 2005, multiple surgeries and treatments and then went on Ipi (MDX-010 trial), was an IPI responder and went NED in Feb 2009, stopped Ipi due to some side effects and have received no treatments since for mel since.  Was on high dose steroids after Ipi to reduce all side effects, but that's it..  Was followed up with scans every 3 months until mid-2012 when we moved to every 6 months for scans…

      – Rocco

      PS- Luke 1:37 is a favorite of mine

        • October 2, 2013 at 4:46 pm
        JerryfromFauq
        Participant

        Howdy again, great to hear that  you are  doing so well.  Yes, it is expected that Ipi and PD-1 will provide some Cures.  Time will provide the numbers (I hope they are HIGH.)  Maybe if a complete responder for over three or 4  years?    (Hope, Hope!)

        • October 2, 2013 at 4:46 pm
        JerryfromFauq
        Participant

        Howdy again, great to hear that  you are  doing so well.  Yes, it is expected that Ipi and PD-1 will provide some Cures.  Time will provide the numbers (I hope they are HIGH.)  Maybe if a complete responder for over three or 4  years?    (Hope, Hope!)

        • October 2, 2013 at 4:46 pm
        JerryfromFauq
        Participant

        Howdy again, great to hear that  you are  doing so well.  Yes, it is expected that Ipi and PD-1 will provide some Cures.  Time will provide the numbers (I hope they are HIGH.)  Maybe if a complete responder for over three or 4  years?    (Hope, Hope!)

        • October 3, 2013 at 2:11 am
        Judy D
        Participant
        Thank you for your encouraging words. I pray that I too will be joining your status of no meds. Continued good health to you
        Judy
        • October 3, 2013 at 2:11 am
        Judy D
        Participant
        Thank you for your encouraging words. I pray that I too will be joining your status of no meds. Continued good health to you
        Judy
        • October 3, 2013 at 2:11 am
        Judy D
        Participant
        Thank you for your encouraging words. I pray that I too will be joining your status of no meds. Continued good health to you
        Judy
      • October 2, 2013 at 10:20 am
      Rocco
      Participant

      Hi – I was dx Stage IV in Aug 2005, multiple surgeries and treatments and then went on Ipi (MDX-010 trial), was an IPI responder and went NED in Feb 2009, stopped Ipi due to some side effects and have received no treatments since for mel since.  Was on high dose steroids after Ipi to reduce all side effects, but that's it..  Was followed up with scans every 3 months until mid-2012 when we moved to every 6 months for scans…

      – Rocco

      PS- Luke 1:37 is a favorite of mine

      • November 7, 2013 at 8:00 pm
      dodgedh2
      Participant

      I am Stage 4 w/unknown primary. I've been NED for over 5 years now and have been released from oncology and am monitored by my primary care physiscian. Not undergoing any treatments and no more scans. It's nerve raking, but I'm beginning to start looking forward to having a life again.

      • November 7, 2013 at 8:00 pm
      dodgedh2
      Participant

      I am Stage 4 w/unknown primary. I've been NED for over 5 years now and have been released from oncology and am monitored by my primary care physiscian. Not undergoing any treatments and no more scans. It's nerve raking, but I'm beginning to start looking forward to having a life again.

      • November 7, 2013 at 8:00 pm
      dodgedh2
      Participant

      I am Stage 4 w/unknown primary. I've been NED for over 5 years now and have been released from oncology and am monitored by my primary care physiscian. Not undergoing any treatments and no more scans. It's nerve raking, but I'm beginning to start looking forward to having a life again.

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