Folks that are NED out there, my hubby could use some hope :)
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Folks that are NED out there, my hubby could use some hope :)

› Forums › General Melanoma Community › Folks that are NED out there, my hubby could use some hope :)

  • Post
    • September 1, 2016 at 8:03 am
    Stonesie
    Participant

    My husband is being treated for Stage 4 Metastatic Melanoma.  Had the initial spot removed from his neck 8 years ago….and this past May (2016) he had some terrible symptoms that led to removal of a lesion on his cerebellum followed by a week of radiation on the mets on his brain (3-4).

    He is currently being treated for mets in his chest and abdomen as well using Mekinist and Tafinlar (at Moffitt Cancer Center).

    I know there are people out there that are living with this disease long term and some that are long time NED.  It would be terrific to know those people are out there.

     

Viewing 23 reply threads
  • Replies
      • September 1, 2016 at 11:30 am
      Randy437
      Participant

      I had mets to brain, both lungs and intestine.  They were all removed surgically and I've been NED for almost seven years.

      • September 1, 2016 at 11:30 am
      Randy437
      Participant

      I had mets to brain, both lungs and intestine.  They were all removed surgically and I've been NED for almost seven years.

      • September 1, 2016 at 11:30 am
      Randy437
      Participant

      I had mets to brain, both lungs and intestine.  They were all removed surgically and I've been NED for almost seven years.

      • September 1, 2016 at 1:55 pm
      Bubbles
      Participant

      Most folks know my story here (so skip to the next one guys!)…but if it will give your husband hope:

      Cutaneous primary to right back (only 0.61mm) but with a positive node in 2003 – removed with CLND to right axillae

      Second cutaneous primary to left forearm, 2007 – removed with CLND to left axillae, no positive node

      Routine CXR found 'something' in chest 2010 – biopsy positive for melanoma. F/U MRI – brain met. Then the games began. Up to that point no treatment but surgery, as ipi, BRAFi, and anti-PD1 were not available. Had lung surg and SRS to brain met. Got in nivolumab (opdivo) trial at Moffitt. The trial lasted 2 1/2 years. My last dose of nivo was in June of 2013. Scans last week confirmed I remain NED. So that = 13 years with melanoma. 70 months (heading to 6 years!) NED.

      Hope this helps. Soon we will have being NED and care at Moffitt in common!  Yours, celeste 

        • September 1, 2016 at 2:06 pm
        MC1R
        Participant

        Celeste – 

        Just curious what led them to do a SNLB on a .61mm lesion?  Wouldn't that be just Stage 1?

         

        • September 1, 2016 at 5:59 pm
        Bubbles
        Participant

        Mostly because I demanded it!!  How do you KNOW what stage you are if you don't do it????  If the sentinel node is negative….great.  If it is not…you are in a very different place. That was my thinking then and now there is this:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

        Knowing what stage you REALLY are is important in regard to treatment options, what f/u scan/recheck schedule would be recommended, and in getting insurance to pay for needed follow up.  It is very important NOT to confuse SNLB and CLND.  The sentinel node biopsy is not particularly invasive and can be done with the necessary wide excision.  Whether to do the complete lymph node disection later is a completely different decision, is certainly more invasive and comes with risks of lymphedema among other things.

        Hope that helps.  Celeste

        • September 1, 2016 at 7:35 pm
        jbronicki
        Participant

        Celeste, I love your answer!  If I've learned nothing else from caring for both my parents with cancer/parkinson's and my husband's situation, you HAVE TO BE YOUR OWN PATIENT ADVOCATE.  It sucks that the patient is put in this role and it's overwhelming at times, but it's true. 

        Also, you are completely right, all the evidence-based research shows that the SLNB is totally worth it, no matter what the depth.  It's not completely 100% but it's statistically significant in staging, recurrence rates, survival models etc.

        • September 1, 2016 at 7:35 pm
        jbronicki
        Participant

        Celeste, I love your answer!  If I've learned nothing else from caring for both my parents with cancer/parkinson's and my husband's situation, you HAVE TO BE YOUR OWN PATIENT ADVOCATE.  It sucks that the patient is put in this role and it's overwhelming at times, but it's true. 

        Also, you are completely right, all the evidence-based research shows that the SLNB is totally worth it, no matter what the depth.  It's not completely 100% but it's statistically significant in staging, recurrence rates, survival models etc.

        • September 1, 2016 at 7:35 pm
        jbronicki
        Participant

        Celeste, I love your answer!  If I've learned nothing else from caring for both my parents with cancer/parkinson's and my husband's situation, you HAVE TO BE YOUR OWN PATIENT ADVOCATE.  It sucks that the patient is put in this role and it's overwhelming at times, but it's true. 

        Also, you are completely right, all the evidence-based research shows that the SLNB is totally worth it, no matter what the depth.  It's not completely 100% but it's statistically significant in staging, recurrence rates, survival models etc.

        • September 2, 2016 at 12:14 am
        MC1R
        Participant

        Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

        3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

        Love what you do for all of us!  You rock.

         

        • September 2, 2016 at 12:14 am
        MC1R
        Participant

        Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

        3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

        Love what you do for all of us!  You rock.

         

        • September 2, 2016 at 12:14 am
        MC1R
        Participant

        Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

        3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

        Love what you do for all of us!  You rock.

         

        • September 1, 2016 at 5:59 pm
        Bubbles
        Participant

        Mostly because I demanded it!!  How do you KNOW what stage you are if you don't do it????  If the sentinel node is negative….great.  If it is not…you are in a very different place. That was my thinking then and now there is this:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

        Knowing what stage you REALLY are is important in regard to treatment options, what f/u scan/recheck schedule would be recommended, and in getting insurance to pay for needed follow up.  It is very important NOT to confuse SNLB and CLND.  The sentinel node biopsy is not particularly invasive and can be done with the necessary wide excision.  Whether to do the complete lymph node disection later is a completely different decision, is certainly more invasive and comes with risks of lymphedema among other things.

        Hope that helps.  Celeste

        • September 1, 2016 at 5:59 pm
        Bubbles
        Participant

        Mostly because I demanded it!!  How do you KNOW what stage you are if you don't do it????  If the sentinel node is negative….great.  If it is not…you are in a very different place. That was my thinking then and now there is this:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

        Knowing what stage you REALLY are is important in regard to treatment options, what f/u scan/recheck schedule would be recommended, and in getting insurance to pay for needed follow up.  It is very important NOT to confuse SNLB and CLND.  The sentinel node biopsy is not particularly invasive and can be done with the necessary wide excision.  Whether to do the complete lymph node disection later is a completely different decision, is certainly more invasive and comes with risks of lymphedema among other things.

        Hope that helps.  Celeste

        • September 1, 2016 at 2:06 pm
        MC1R
        Participant

        Celeste – 

        Just curious what led them to do a SNLB on a .61mm lesion?  Wouldn't that be just Stage 1?

         

        • September 1, 2016 at 2:06 pm
        MC1R
        Participant

        Celeste – 

        Just curious what led them to do a SNLB on a .61mm lesion?  Wouldn't that be just Stage 1?

         

        • September 1, 2016 at 9:30 pm
        William.F
        Participant

        Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

         

        • September 1, 2016 at 9:30 pm
        William.F
        Participant

        Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

         

        • September 1, 2016 at 9:30 pm
        William.F
        Participant

        Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

         

        • September 2, 2016 at 12:54 am
        Stonesie
        Participant

        Wow.  Thank you for these responses!  This is definitely an awesome group of people.  

        I have been lurking ever since May and have learned a LOT from everyone here about what we really need to know.

         

         

        • September 2, 2016 at 12:54 am
        Stonesie
        Participant

        Wow.  Thank you for these responses!  This is definitely an awesome group of people.  

        I have been lurking ever since May and have learned a LOT from everyone here about what we really need to know.

         

         

        • September 2, 2016 at 12:54 am
        Stonesie
        Participant

        Wow.  Thank you for these responses!  This is definitely an awesome group of people.  

        I have been lurking ever since May and have learned a LOT from everyone here about what we really need to know.

         

         

      • September 1, 2016 at 1:55 pm
      Bubbles
      Participant

      Most folks know my story here (so skip to the next one guys!)…but if it will give your husband hope:

      Cutaneous primary to right back (only 0.61mm) but with a positive node in 2003 – removed with CLND to right axillae

      Second cutaneous primary to left forearm, 2007 – removed with CLND to left axillae, no positive node

      Routine CXR found 'something' in chest 2010 – biopsy positive for melanoma. F/U MRI – brain met. Then the games began. Up to that point no treatment but surgery, as ipi, BRAFi, and anti-PD1 were not available. Had lung surg and SRS to brain met. Got in nivolumab (opdivo) trial at Moffitt. The trial lasted 2 1/2 years. My last dose of nivo was in June of 2013. Scans last week confirmed I remain NED. So that = 13 years with melanoma. 70 months (heading to 6 years!) NED.

      Hope this helps. Soon we will have being NED and care at Moffitt in common!  Yours, celeste 

      • September 1, 2016 at 1:55 pm
      Bubbles
      Participant

      Most folks know my story here (so skip to the next one guys!)…but if it will give your husband hope:

      Cutaneous primary to right back (only 0.61mm) but with a positive node in 2003 – removed with CLND to right axillae

      Second cutaneous primary to left forearm, 2007 – removed with CLND to left axillae, no positive node

      Routine CXR found 'something' in chest 2010 – biopsy positive for melanoma. F/U MRI – brain met. Then the games began. Up to that point no treatment but surgery, as ipi, BRAFi, and anti-PD1 were not available. Had lung surg and SRS to brain met. Got in nivolumab (opdivo) trial at Moffitt. The trial lasted 2 1/2 years. My last dose of nivo was in June of 2013. Scans last week confirmed I remain NED. So that = 13 years with melanoma. 70 months (heading to 6 years!) NED.

      Hope this helps. Soon we will have being NED and care at Moffitt in common!  Yours, celeste 

      • September 1, 2016 at 2:20 pm
      Johnjk04
      Participant

      January 2012 – melanoma in brain, lungs, liver, gall bladder and adrenal gland.

      Two cranitoriums, 3 Cyber Knife radiations and ippi / nivo clinical trial.

      4 years NED.

      • September 1, 2016 at 2:20 pm
      Johnjk04
      Participant

      January 2012 – melanoma in brain, lungs, liver, gall bladder and adrenal gland.

      Two cranitoriums, 3 Cyber Knife radiations and ippi / nivo clinical trial.

      4 years NED.

      • September 1, 2016 at 2:20 pm
      Johnjk04
      Participant

      January 2012 – melanoma in brain, lungs, liver, gall bladder and adrenal gland.

      Two cranitoriums, 3 Cyber Knife radiations and ippi / nivo clinical trial.

      4 years NED.

      • September 1, 2016 at 8:04 pm
      Kim K
      Participant

      2002 – right shoulder blade 2.06 mm Clark IV removed, SNB & WLE – all negative.

      2009 – lung met and pectoralis muscle met.  VATS to remove and confirm stage IV.  

      2010 – 23 bags of IL-2, remaining met melted away, complete response!  NED ever since.

      14 years with mel, 6 years NED.

      • September 1, 2016 at 8:04 pm
      Kim K
      Participant

      2002 – right shoulder blade 2.06 mm Clark IV removed, SNB & WLE – all negative.

      2009 – lung met and pectoralis muscle met.  VATS to remove and confirm stage IV.  

      2010 – 23 bags of IL-2, remaining met melted away, complete response!  NED ever since.

      14 years with mel, 6 years NED.

      • September 1, 2016 at 8:04 pm
      Kim K
      Participant

      2002 – right shoulder blade 2.06 mm Clark IV removed, SNB & WLE – all negative.

      2009 – lung met and pectoralis muscle met.  VATS to remove and confirm stage IV.  

      2010 – 23 bags of IL-2, remaining met melted away, complete response!  NED ever since.

      14 years with mel, 6 years NED.

      • September 2, 2016 at 1:15 pm
      Gene_S
      Participant

      My husband became Stage IV in Oct. 2010 with an unresectable lesion and metastisis in the liver and lungs and started a clinical trial in March 2011 of IPI 10 mg/kg and GMCSF and became NED in July 2012 and has remained for over 4 years now.

      Judy (loving wife of Gene Stage IV and now NED for over 4 years)

       

      • September 2, 2016 at 1:15 pm
      Gene_S
      Participant

      My husband became Stage IV in Oct. 2010 with an unresectable lesion and metastisis in the liver and lungs and started a clinical trial in March 2011 of IPI 10 mg/kg and GMCSF and became NED in July 2012 and has remained for over 4 years now.

      Judy (loving wife of Gene Stage IV and now NED for over 4 years)

       

      • September 2, 2016 at 1:15 pm
      Gene_S
      Participant

      My husband became Stage IV in Oct. 2010 with an unresectable lesion and metastisis in the liver and lungs and started a clinical trial in March 2011 of IPI 10 mg/kg and GMCSF and became NED in July 2012 and has remained for over 4 years now.

      Judy (loving wife of Gene Stage IV and now NED for over 4 years)

       

      • September 2, 2016 at 3:25 pm
      Rick from NC
      Participant

      NED since 1992 following IL-2 at NIH for Stage 4 with sub-q and lung mets.  24 years now.  Treatments now are more effective.  Best wishes.

      • September 2, 2016 at 3:25 pm
      Rick from NC
      Participant

      NED since 1992 following IL-2 at NIH for Stage 4 with sub-q and lung mets.  24 years now.  Treatments now are more effective.  Best wishes.

      • September 2, 2016 at 3:25 pm
      Rick from NC
      Participant

      NED since 1992 following IL-2 at NIH for Stage 4 with sub-q and lung mets.  24 years now.  Treatments now are more effective.  Best wishes.

        • September 3, 2016 at 7:32 am
        Kim K
        Participant

        Dang, that was before it was approved wasn't it?  Thank you for being a rattie for people like me.  You guys helped to make IL-2 safer and gave people like me hope if I responded.  I hope these newer drugs can do the same.

        Just too bad they cost an arm and a leg and several have lifelong damage as a result ex. blow out their pituitary gland….

        At least after IL-2 I was done and got a really nice facial peel that insurance paid for!

        Anyway, I did respond and am still NED 6 years later.  Your data helps me sleep at night knowing after long term follow up, I probably won't ever hear from mel again cheeky.

        • September 3, 2016 at 7:32 am
        Kim K
        Participant

        Dang, that was before it was approved wasn't it?  Thank you for being a rattie for people like me.  You guys helped to make IL-2 safer and gave people like me hope if I responded.  I hope these newer drugs can do the same.

        Just too bad they cost an arm and a leg and several have lifelong damage as a result ex. blow out their pituitary gland….

        At least after IL-2 I was done and got a really nice facial peel that insurance paid for!

        Anyway, I did respond and am still NED 6 years later.  Your data helps me sleep at night knowing after long term follow up, I probably won't ever hear from mel again cheeky.

        • September 3, 2016 at 7:32 am
        Kim K
        Participant

        Dang, that was before it was approved wasn't it?  Thank you for being a rattie for people like me.  You guys helped to make IL-2 safer and gave people like me hope if I responded.  I hope these newer drugs can do the same.

        Just too bad they cost an arm and a leg and several have lifelong damage as a result ex. blow out their pituitary gland….

        At least after IL-2 I was done and got a really nice facial peel that insurance paid for!

        Anyway, I did respond and am still NED 6 years later.  Your data helps me sleep at night knowing after long term follow up, I probably won't ever hear from mel again cheeky.

      • September 2, 2016 at 8:56 pm
      Casitas1
      Participant

      2010 Desmoplastic Neurotropic Melanoma lower lip 4.5mm excised STAGE 2B

      2014 reoccurrence excised

      2015 . metastases bone(jaw)lymph node and soft tissue in cheek stage 4

      2015 July start Ippi/nivo. Failed after 2 doses steroids 6 weeks.

      2015 Nov. low dose chemo 4 doses.

      2016 Jan. Keytruda 10 doses NED.

      Best, Paul

       

       

      • September 2, 2016 at 8:56 pm
      Casitas1
      Participant

      2010 Desmoplastic Neurotropic Melanoma lower lip 4.5mm excised STAGE 2B

      2014 reoccurrence excised

      2015 . metastases bone(jaw)lymph node and soft tissue in cheek stage 4

      2015 July start Ippi/nivo. Failed after 2 doses steroids 6 weeks.

      2015 Nov. low dose chemo 4 doses.

      2016 Jan. Keytruda 10 doses NED.

      Best, Paul

       

       

      • September 2, 2016 at 8:56 pm
      Casitas1
      Participant

      2010 Desmoplastic Neurotropic Melanoma lower lip 4.5mm excised STAGE 2B

      2014 reoccurrence excised

      2015 . metastases bone(jaw)lymph node and soft tissue in cheek stage 4

      2015 July start Ippi/nivo. Failed after 2 doses steroids 6 weeks.

      2015 Nov. low dose chemo 4 doses.

      2016 Jan. Keytruda 10 doses NED.

      Best, Paul

       

       

      • September 3, 2016 at 11:30 pm
      Richard_K
      Participant

      1998-mole removed from left cheek, WLE good margins, SLNB negative, stage Ib

      September 2009-mets in lung, IL-2 unsuccessful, stage IV

      March 2010-started in phase 2 trial for what would be Zelboraf

      September 2016-still taking Zelboraf and currently enjoying vacation in the Canadian Rockies

      • September 3, 2016 at 11:30 pm
      Richard_K
      Participant

      1998-mole removed from left cheek, WLE good margins, SLNB negative, stage Ib

      September 2009-mets in lung, IL-2 unsuccessful, stage IV

      March 2010-started in phase 2 trial for what would be Zelboraf

      September 2016-still taking Zelboraf and currently enjoying vacation in the Canadian Rockies

        • September 17, 2016 at 8:01 am
        Stonesie
        Participant

        You are all giving ME hope that I'll get to have lots of happy years with my hubby.  Thank you for that.

        • September 17, 2016 at 8:01 am
        Stonesie
        Participant

        You are all giving ME hope that I'll get to have lots of happy years with my hubby.  Thank you for that.

        • September 17, 2016 at 8:01 am
        Stonesie
        Participant

        You are all giving ME hope that I'll get to have lots of happy years with my hubby.  Thank you for that.

      • September 3, 2016 at 11:30 pm
      Richard_K
      Participant

      1998-mole removed from left cheek, WLE good margins, SLNB negative, stage Ib

      September 2009-mets in lung, IL-2 unsuccessful, stage IV

      March 2010-started in phase 2 trial for what would be Zelboraf

      September 2016-still taking Zelboraf and currently enjoying vacation in the Canadian Rockies

Viewing 23 reply threads
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