treatment decisions to be made….stage IIIB, could really use some help
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treatment decisions to be made….stage IIIB, could really use some help

› Forums › General Melanoma Community › treatment decisions to be made….stage IIIB, could really use some help

  • Post
    • December 29, 2014 at 6:10 pm
    jenny22
    Participant

    Hi to all,

    I have read many posts here regarding the lack of clear treatment paths in the adjuvant setting for stage III, (B in my case)….I could really use some insight or any thoughts that some of you may have.  Let me explain a little…..

    As some of you may have read in my intitial post, my melanoma was found during a facelift…..and as a result we were not able to do the SNB (it was on my neck), since all lymphatics were rearranged….that was last Sept 2013…..Everyone i saw thought it was a LOW likelihood that it would have spread at that point, since my primary was 1.5 Breslow, NOT ULCERATED, mitotic rate of 1……i was treated at SLOAN, had WLE excision by Dan COit and was being followed with ultrasounds to look for LN….nothing showed up all last year…clear US.

    November 2014, found 2 small Subq little bumps…. turn out to be MM…..right near orig. scar and close by…calling them 'intransits…..but still calling me IIIB, since no LN involved….though the negative in me, thinks there may be or certainly could be lingering cells that just arent large enough yet to show up on an scans or ultrasounds…..BUT for now everyone staging me at IIIB…obviously scared to death, as high risk for recurrence.  I ahd srugery in December to compeltely reomvoe, and having more again in early JAN to get wider margin ….

    Here is my question:  Adjuvant treatment- I ahve seen some top notch DOCs…..

    Options have ranged from: watch and wait, interferon, Vaccine trial and even IPI….

    I am scheduled to see Ana Pavlick again next week to see exactly whcih trials she is thinking of for me…..

    Lynn Shucter at U PENN is reccomeding IPI…low dose….

    But from ive read (ASCO June this year)…that is questionalbe in this setting.

    Vaccine trials have promise but no data yet to say, they really work.  Most dont even use your own tissue to create the vaccine so its a shot in the dark to know if it will help YOU.

    Do i need to go see YET ANOTHER expert to help with the decison (I've seen, Sloan, NYU, Penn, Mt. Sinai and rutgers)

    Any ideas how to make such important deicsions????

    As walys, many thanks for any insight.

     

    j

     

Viewing 11 reply threads
  • Replies
      • December 29, 2014 at 6:58 pm
      Julie in SoCal
      Participant

      Hi Jenny,

      We're in similar boats: Messed up lymphatics making it hard to do a SNB.  I'm stage 3c with intransits.  

      Probably one of the hardest places in this melanoma journey is making treatment decisions in that there don't seem to be any easy straight forward decisions.  However ,one of the best pieces of advice I was given from a member of this board in making treatment decisions was, 1) do your research, 2) talk to the experts and get a second, third, fourth… opinion, 3) make the choice YOU are comfortable with (it's your body), and 4) go for it- don't look back and question yourself.  

      Blessings to you and your family in this New Year!

      Julie

      Stage 3c: WLE (three times), SNB (twice), LND, HD-INF, GM-CSF, IPI = NERD

      • December 29, 2014 at 6:58 pm
      Julie in SoCal
      Participant

      Hi Jenny,

      We're in similar boats: Messed up lymphatics making it hard to do a SNB.  I'm stage 3c with intransits.  

      Probably one of the hardest places in this melanoma journey is making treatment decisions in that there don't seem to be any easy straight forward decisions.  However ,one of the best pieces of advice I was given from a member of this board in making treatment decisions was, 1) do your research, 2) talk to the experts and get a second, third, fourth… opinion, 3) make the choice YOU are comfortable with (it's your body), and 4) go for it- don't look back and question yourself.  

      Blessings to you and your family in this New Year!

      Julie

      Stage 3c: WLE (three times), SNB (twice), LND, HD-INF, GM-CSF, IPI = NERD

      • December 29, 2014 at 6:58 pm
      Julie in SoCal
      Participant

      Hi Jenny,

      We're in similar boats: Messed up lymphatics making it hard to do a SNB.  I'm stage 3c with intransits.  

      Probably one of the hardest places in this melanoma journey is making treatment decisions in that there don't seem to be any easy straight forward decisions.  However ,one of the best pieces of advice I was given from a member of this board in making treatment decisions was, 1) do your research, 2) talk to the experts and get a second, third, fourth… opinion, 3) make the choice YOU are comfortable with (it's your body), and 4) go for it- don't look back and question yourself.  

      Blessings to you and your family in this New Year!

      Julie

      Stage 3c: WLE (three times), SNB (twice), LND, HD-INF, GM-CSF, IPI = NERD

      • December 29, 2014 at 9:49 pm
      arthurjedi007
      Participant

      Tough decision. One thing to keep in mind is some treatments exclude you from other treatments that you may have wanted later on. I found that out the hard way.

      Other than that I can't think of any advice that hasn't already been said.

      Artie

      • December 29, 2014 at 9:49 pm
      arthurjedi007
      Participant

      Tough decision. One thing to keep in mind is some treatments exclude you from other treatments that you may have wanted later on. I found that out the hard way.

      Other than that I can't think of any advice that hasn't already been said.

      Artie

      • December 29, 2014 at 9:49 pm
      arthurjedi007
      Participant

      Tough decision. One thing to keep in mind is some treatments exclude you from other treatments that you may have wanted later on. I found that out the hard way.

      Other than that I can't think of any advice that hasn't already been said.

      Artie

      • December 30, 2014 at 1:04 am
      DZnDef
      Participant

      You are no doubt in a tough spot when it comes to treatment options.  While you are deciding, consider also taking steps to get yourself as healthy as you can at a fundamental level.  This will boost your immune system and it is the goal of many current melanoma drugs to boost the immune system.  So why not try to help that process along by addressing your overall health apart from melanoma?  You can find a good basic list here

      Dietary Guidelines

      The idea being to avoid putting chemicals and denatured foods into our bodies.  Most "modern" convenience food was only created in the last 50 to 100 years.  What are the odds that our bodies have evolved and adapted to function well on these foods?

      Best of health to you and Happy New Year

      • December 30, 2014 at 1:04 am
      DZnDef
      Participant

      You are no doubt in a tough spot when it comes to treatment options.  While you are deciding, consider also taking steps to get yourself as healthy as you can at a fundamental level.  This will boost your immune system and it is the goal of many current melanoma drugs to boost the immune system.  So why not try to help that process along by addressing your overall health apart from melanoma?  You can find a good basic list here

      Dietary Guidelines

      The idea being to avoid putting chemicals and denatured foods into our bodies.  Most "modern" convenience food was only created in the last 50 to 100 years.  What are the odds that our bodies have evolved and adapted to function well on these foods?

      Best of health to you and Happy New Year

      • December 30, 2014 at 1:04 am
      DZnDef
      Participant

      You are no doubt in a tough spot when it comes to treatment options.  While you are deciding, consider also taking steps to get yourself as healthy as you can at a fundamental level.  This will boost your immune system and it is the goal of many current melanoma drugs to boost the immune system.  So why not try to help that process along by addressing your overall health apart from melanoma?  You can find a good basic list here

      Dietary Guidelines

      The idea being to avoid putting chemicals and denatured foods into our bodies.  Most "modern" convenience food was only created in the last 50 to 100 years.  What are the odds that our bodies have evolved and adapted to function well on these foods?

      Best of health to you and Happy New Year

      • December 30, 2014 at 4:16 am
      Bubbles
      Participant

      Jenny,

      Obviously melanoma and treatment choices are confusing on a good day, complicated further when seeking adjuvant care and personal in every way!  There are however, many more adjuvant treatment options available.  Here is a list I put together in September and would be easy for you to re-do on the clinicaltrials.gov website –

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

      If you look at the bottom of this post…  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html

      You see this:  "Adjuvant ipi and Nivo (now being expanded with 1,500 patients!!!!)   So far, in patients in the first cohort – there has been a 45% response rate, with only 20 patients and only at 8 month f/u…no relapses, and includes patients with Stage IV/IIIC melanoma."

      I realize that you have been classifies as  IIIB, but if this trial interests you I would still give folks at Moffitt a call and see what they say.  Your situation may qualify, or perhaps not.  But, it you are interested in any of the trials you see….call the coordinator.  Ask questions.  It can never hurt and you might get some information that helps or even a place in a trial you think is right for you.

      Hang in there.  I wish you my best.  Celeste

        • December 30, 2014 at 4:24 pm
        jenny22
        Participant

        thanks celeste….i will take a very close look at this list…..i was thinking i may still need ONE more appt soemwhere to try and get clearer in my thinking…i was thinking Dana Farber, Md anderson or Moffit….we'll see what i hear at NYU on jan 7th and then will further investigate…….  Thanks so much for sending this list.

         

        And thanks to you Maggie, Artie and Julie…..i appreciate your repsonses and will continue to do my research in the hopes of ,making the best decison possible to stand a chacne of sticking around for many years to come!!!!!! 

         

        thanks again all.

        • December 30, 2014 at 4:24 pm
        jenny22
        Participant

        thanks celeste….i will take a very close look at this list…..i was thinking i may still need ONE more appt soemwhere to try and get clearer in my thinking…i was thinking Dana Farber, Md anderson or Moffit….we'll see what i hear at NYU on jan 7th and then will further investigate…….  Thanks so much for sending this list.

         

        And thanks to you Maggie, Artie and Julie…..i appreciate your repsonses and will continue to do my research in the hopes of ,making the best decison possible to stand a chacne of sticking around for many years to come!!!!!! 

         

        thanks again all.

        • December 30, 2014 at 4:24 pm
        jenny22
        Participant

        thanks celeste….i will take a very close look at this list…..i was thinking i may still need ONE more appt soemwhere to try and get clearer in my thinking…i was thinking Dana Farber, Md anderson or Moffit….we'll see what i hear at NYU on jan 7th and then will further investigate…….  Thanks so much for sending this list.

         

        And thanks to you Maggie, Artie and Julie…..i appreciate your repsonses and will continue to do my research in the hopes of ,making the best decison possible to stand a chacne of sticking around for many years to come!!!!!! 

         

        thanks again all.

      • December 30, 2014 at 4:16 am
      Bubbles
      Participant

      Jenny,

      Obviously melanoma and treatment choices are confusing on a good day, complicated further when seeking adjuvant care and personal in every way!  There are however, many more adjuvant treatment options available.  Here is a list I put together in September and would be easy for you to re-do on the clinicaltrials.gov website –

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

      If you look at the bottom of this post…  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html

      You see this:  "Adjuvant ipi and Nivo (now being expanded with 1,500 patients!!!!)   So far, in patients in the first cohort – there has been a 45% response rate, with only 20 patients and only at 8 month f/u…no relapses, and includes patients with Stage IV/IIIC melanoma."

      I realize that you have been classifies as  IIIB, but if this trial interests you I would still give folks at Moffitt a call and see what they say.  Your situation may qualify, or perhaps not.  But, it you are interested in any of the trials you see….call the coordinator.  Ask questions.  It can never hurt and you might get some information that helps or even a place in a trial you think is right for you.

      Hang in there.  I wish you my best.  Celeste

      • December 30, 2014 at 4:16 am
      Bubbles
      Participant

      Jenny,

      Obviously melanoma and treatment choices are confusing on a good day, complicated further when seeking adjuvant care and personal in every way!  There are however, many more adjuvant treatment options available.  Here is a list I put together in September and would be easy for you to re-do on the clinicaltrials.gov website –

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

      If you look at the bottom of this post…  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html

      You see this:  "Adjuvant ipi and Nivo (now being expanded with 1,500 patients!!!!)   So far, in patients in the first cohort – there has been a 45% response rate, with only 20 patients and only at 8 month f/u…no relapses, and includes patients with Stage IV/IIIC melanoma."

      I realize that you have been classifies as  IIIB, but if this trial interests you I would still give folks at Moffitt a call and see what they say.  Your situation may qualify, or perhaps not.  But, it you are interested in any of the trials you see….call the coordinator.  Ask questions.  It can never hurt and you might get some information that helps or even a place in a trial you think is right for you.

      Hang in there.  I wish you my best.  Celeste

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