Info I can’t seem to find on here
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Info I can’t seem to find on here

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  • Post
    • April 6, 2015 at 11:03 pm
    Chris in Minnesota
    Participant

    Here is a quick story of my melanoma.  I had a 8cm tumor in my left axilla that was unresectable due to it involving a major vein. My melanoma oncologist then started chemo that included avastin, abraxane, and carboplatin in hopes to shrink it enough to shrink off the vein and surgically remove it.  It worked and within 4 months of starting chemo I was being operated on.  They did a CLND of my left axilla. They removed the mass and the pathology of the mass showed no viable tumor but "many" of the 21 lymph nodes showing "treatment effect".  The doctor said that meant it appears that many were once infected with melanoma but the chemo showed a complete response.  That surgery was in August 2013.  In October 2015 I had a round of radiation in that area and have been on GM-CSF ever since then.  I have been having clean scans since as well.  My question is this.  Has anyone very had a "complete response" with traditional chemo like this and did they ever have a recurrence?   I have my scans coming up next weeks and am a little worried this time as I've had a cough for the last couple months that won't go away

    thanks

    Chris

     

     

     

Viewing 5 reply threads
  • Replies
      • April 7, 2015 at 1:57 am
      Bubbles
      Participant

      Hey Chris,

      I assume you mean that you have been on GM-CSF since October of 2014.  I hope your upcoming scans are clear as can be.  I also hope that you are being followed by a melanoma oncologist as melanoma treatments have changed a great deal in the past 4 years and only those in the know will be able to make sure you are given the most up-to-date standard of care.  However, though I have not taken GM-CSFmyself, here is a post that I made about it last year that may give you some information. 

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html

      Perhaps that will help, but ipi and BRAFi (if you are BRAF positive and I hope your lymph nodes were tested for the mutation) are certainly first line, FDA approved treatment options that are available to you should you need them.  I wish you well on your scans.  Celeste

      • April 7, 2015 at 1:57 am
      Bubbles
      Participant

      Hey Chris,

      I assume you mean that you have been on GM-CSF since October of 2014.  I hope your upcoming scans are clear as can be.  I also hope that you are being followed by a melanoma oncologist as melanoma treatments have changed a great deal in the past 4 years and only those in the know will be able to make sure you are given the most up-to-date standard of care.  However, though I have not taken GM-CSFmyself, here is a post that I made about it last year that may give you some information. 

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html

      Perhaps that will help, but ipi and BRAFi (if you are BRAF positive and I hope your lymph nodes were tested for the mutation) are certainly first line, FDA approved treatment options that are available to you should you need them.  I wish you well on your scans.  Celeste

        • April 7, 2015 at 2:52 am
        Chris in Minnesota
        Participant

        Sorry.  I've been on GM-CSF since Oct 2013.  They did test a biopsy before I started chemo and I am BRAF negative.  I am being seen by the Mayo Clinic by a Melanoma Oncologist

        • April 7, 2015 at 2:52 am
        Chris in Minnesota
        Participant

        Sorry.  I've been on GM-CSF since Oct 2013.  They did test a biopsy before I started chemo and I am BRAF negative.  I am being seen by the Mayo Clinic by a Melanoma Oncologist

        • April 7, 2015 at 3:01 am
        Bubbles
        Participant

        Glad they did the testing.  At least we now know that BRAF negative folks do just as well as everyone else with ipi and anti-PD1.  Were/are you in a trial? Curious as to why your docs used GM-CSF rather than ipi.  But, I'm sure they had their reasons.  Hoping your scans look great.  Keep us posted.  Try not to worry.  I know.  Hard to do.  Hang in there.  Celeste

        • April 7, 2015 at 3:01 am
        Bubbles
        Participant

        Glad they did the testing.  At least we now know that BRAF negative folks do just as well as everyone else with ipi and anti-PD1.  Were/are you in a trial? Curious as to why your docs used GM-CSF rather than ipi.  But, I'm sure they had their reasons.  Hoping your scans look great.  Keep us posted.  Try not to worry.  I know.  Hard to do.  Hang in there.  Celeste

        • April 8, 2015 at 3:49 pm
        Cooper
        Participant

        Hi, there is a patient on this video who did Gmcsf (leukine) for some time and has been NED for a long time: http://melanomainternational.org/events-webinar/patient-experience-video/#

        • April 8, 2015 at 3:49 pm
        Cooper
        Participant

        Hi, there is a patient on this video who did Gmcsf (leukine) for some time and has been NED for a long time: http://melanomainternational.org/events-webinar/patient-experience-video/#

        • April 9, 2015 at 12:22 am
        Bubbles
        Participant

        Thanks, cp!

         

        • April 9, 2015 at 12:22 am
        Bubbles
        Participant

        Thanks, cp!

         

        • April 9, 2015 at 12:22 am
        Bubbles
        Participant

        Thanks, cp!

         

        • April 8, 2015 at 3:49 pm
        Cooper
        Participant

        Hi, there is a patient on this video who did Gmcsf (leukine) for some time and has been NED for a long time: http://melanomainternational.org/events-webinar/patient-experience-video/#

        • April 7, 2015 at 3:01 am
        Bubbles
        Participant

        Glad they did the testing.  At least we now know that BRAF negative folks do just as well as everyone else with ipi and anti-PD1.  Were/are you in a trial? Curious as to why your docs used GM-CSF rather than ipi.  But, I'm sure they had their reasons.  Hoping your scans look great.  Keep us posted.  Try not to worry.  I know.  Hard to do.  Hang in there.  Celeste

        • April 7, 2015 at 2:52 am
        Chris in Minnesota
        Participant

        Sorry.  I've been on GM-CSF since Oct 2013.  They did test a biopsy before I started chemo and I am BRAF negative.  I am being seen by the Mayo Clinic by a Melanoma Oncologist

      • April 7, 2015 at 1:57 am
      Bubbles
      Participant

      Hey Chris,

      I assume you mean that you have been on GM-CSF since October of 2014.  I hope your upcoming scans are clear as can be.  I also hope that you are being followed by a melanoma oncologist as melanoma treatments have changed a great deal in the past 4 years and only those in the know will be able to make sure you are given the most up-to-date standard of care.  However, though I have not taken GM-CSFmyself, here is a post that I made about it last year that may give you some information. 

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html

      Perhaps that will help, but ipi and BRAFi (if you are BRAF positive and I hope your lymph nodes were tested for the mutation) are certainly first line, FDA approved treatment options that are available to you should you need them.  I wish you well on your scans.  Celeste

      • April 14, 2015 at 1:48 am
      Toby0987
      Participant

      Hey Chris, I also go up to mayo,who is your doc?  I have McWilliams,seems knowledgeable,but wanted to know your view,?  I have 3b melanoma and now papillary thyroid cancer as well and a unknown spot on my liver. I've had pets every 6 months and my thyroid and liver showed hot each time but Mcdreamy said they were probably nothing so now they fine needled my thyroid and it is non-melanoma but papillary carcinoma it kind of makes me nervous about the doc.  I thought they should have done the fnb back in 2013 when it first popped

        • April 15, 2015 at 4:04 am
        Chris in Minnesota
        Participant

        My oncologist is Dr Block.  He is a brilliant young doctor.  I met him and Dr Markovich together as a 3rd opionon after seeing a couple melanoma oncologists in the twin cities.  The doctors at the Mayo clinic won me over hands down and have done a wonderful job caring for me

        Good luck with your journey

        • April 15, 2015 at 4:04 am
        Chris in Minnesota
        Participant

        My oncologist is Dr Block.  He is a brilliant young doctor.  I met him and Dr Markovich together as a 3rd opionon after seeing a couple melanoma oncologists in the twin cities.  The doctors at the Mayo clinic won me over hands down and have done a wonderful job caring for me

        Good luck with your journey

        • April 15, 2015 at 4:04 am
        Chris in Minnesota
        Participant

        My oncologist is Dr Block.  He is a brilliant young doctor.  I met him and Dr Markovich together as a 3rd opionon after seeing a couple melanoma oncologists in the twin cities.  The doctors at the Mayo clinic won me over hands down and have done a wonderful job caring for me

        Good luck with your journey

      • April 14, 2015 at 1:48 am
      Toby0987
      Participant

      Hey Chris, I also go up to mayo,who is your doc?  I have McWilliams,seems knowledgeable,but wanted to know your view,?  I have 3b melanoma and now papillary thyroid cancer as well and a unknown spot on my liver. I've had pets every 6 months and my thyroid and liver showed hot each time but Mcdreamy said they were probably nothing so now they fine needled my thyroid and it is non-melanoma but papillary carcinoma it kind of makes me nervous about the doc.  I thought they should have done the fnb back in 2013 when it first popped

      • April 14, 2015 at 1:48 am
      Toby0987
      Participant

      Hey Chris, I also go up to mayo,who is your doc?  I have McWilliams,seems knowledgeable,but wanted to know your view,?  I have 3b melanoma and now papillary thyroid cancer as well and a unknown spot on my liver. I've had pets every 6 months and my thyroid and liver showed hot each time but Mcdreamy said they were probably nothing so now they fine needled my thyroid and it is non-melanoma but papillary carcinoma it kind of makes me nervous about the doc.  I thought they should have done the fnb back in 2013 when it first popped

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