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BigDaddy5 update – SLNB negative, but DiscoverDX Stage 2 “Normal” Confidence
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BigDaddy5 update – SLNB negative, but DiscoverDX Stage 2 “Normal” Confidence

› Forums › General Melanoma Community › BigDaddy5 update – SLNB negative, but DiscoverDX Stage 2 “Normal” Confidence

  • Post
    • May 16, 2016 at 7:49 pm
    Bigdaddy5
    Participant

       

      Hi All:

      Got some news today.  I received my Decision-DX result back as positive result for Stage 2 "Normal Confidence" (meaning that according to 31 genes, I now have a 69% of recurrence within 5 years compared to other Stage 1 and 2 patients).  

      This is also following my testing postive for the NRAS Q61k malignancy  few weeks back – which isn't really all that useful info to know – until something metastisizes.  Celeste has been schooling me with her blog – and I appreciate she is on my side.

      I had a successful wide-local-excision surgery February 24, 2016 with a negative SLNB result (right axilla).  Thought I was "good".  Odds are – perhaps not. Was something missed in the lymph nodes?  What is the best strategy to wait for this battle?  

      It's like a large, ominous dark cloud forming overhead.  There's a 31% chance the storm might blow over – but it's odds-on likely to cause some problems for you. And when you factor in the positive NRAS malignancy – when the storm comes – the umbrellas everyone else uses just might not work for you.  They are thinking about inventing one for you (and the one's like you), but it's just a concept now – but when these umbrellas are designed – they might work real well.  Just hope it blows over.  One in three, you bet on worse odds than that before.

      Doctor now ordering a MRI.  My first three month appointment is mid-June.  Trying to get myself in "hey kids – the glass is half-full" mode.  I will – but I thought I'd reach out to my friends in the cloud for some advice.

      A little irony here.  My 76 year old Dad suddenly died about a month ago.  Healthy as a police horse (not taking any pills, not being treate dfor anything) and he just suddenly died of a heart attack in front of my Mom.  We consoled her and said that he did not suffer in that he did not see it coming – and yet it is like he stepped off a curb and the bus hit him.

      Conversely, me on the other hand.  I feel like I am getting plenty of forewarning that a big storm is coming.  It is my hope that perhaps detection of an early metastasis means that treatment will be more effective.  Not sure that's so – but my observation just got upped with an MRI order for my pelvis and chest.

      Thanks for listening.

      Sincerely,

      Neil D

    Viewing 2 reply threads
    • Replies
        • May 17, 2016 at 1:40 pm
        Linny
        Participant

          Hi Neil, sorry to hear you're going through this stress. Sounds like the best thing you can do for the time being is to be vigilant. Yes, hearing that you have a 31% chance of not having a recurrence sucks. However, the longer you go without a recurrence, that percentage increases over time. 

          The MRI will establish a baseline and you and scanning machines will become very good friends over the next year or so. 

          Not sure what the Q61k business means, but according to the OncLive web site, those with NRAS mutations had better outcomes that those without the mutation. So there may be a silver lining to this cloud your currently under. Here's the article:  http://www.onclive.com/web-exclusives/NRAS-Mutations-May-Serve-as-Efficacy-Biomarker–for-Immunotherapies-in-Melanoma

          • May 17, 2016 at 1:40 pm
          Linny
          Participant

            Hi Neil, sorry to hear you're going through this stress. Sounds like the best thing you can do for the time being is to be vigilant. Yes, hearing that you have a 31% chance of not having a recurrence sucks. However, the longer you go without a recurrence, that percentage increases over time. 

            The MRI will establish a baseline and you and scanning machines will become very good friends over the next year or so. 

            Not sure what the Q61k business means, but according to the OncLive web site, those with NRAS mutations had better outcomes that those without the mutation. So there may be a silver lining to this cloud your currently under. Here's the article:  http://www.onclive.com/web-exclusives/NRAS-Mutations-May-Serve-as-Efficacy-Biomarker–for-Immunotherapies-in-Melanoma

            • May 17, 2016 at 1:40 pm
            Linny
            Participant

              Hi Neil, sorry to hear you're going through this stress. Sounds like the best thing you can do for the time being is to be vigilant. Yes, hearing that you have a 31% chance of not having a recurrence sucks. However, the longer you go without a recurrence, that percentage increases over time. 

              The MRI will establish a baseline and you and scanning machines will become very good friends over the next year or so. 

              Not sure what the Q61k business means, but according to the OncLive web site, those with NRAS mutations had better outcomes that those without the mutation. So there may be a silver lining to this cloud your currently under. Here's the article:  http://www.onclive.com/web-exclusives/NRAS-Mutations-May-Serve-as-Efficacy-Biomarker–for-Immunotherapies-in-Melanoma

                • May 18, 2016 at 12:17 am
                Bigdaddy5
                Participant

                  Linny:

                  Thanks for the link. Needed that reassurance. 

                   

                  ND

                  • May 18, 2016 at 12:17 am
                  Bigdaddy5
                  Participant

                    Linny:

                    Thanks for the link. Needed that reassurance. 

                     

                    ND

                    • May 18, 2016 at 12:17 am
                    Bigdaddy5
                    Participant

                      Linny:

                      Thanks for the link. Needed that reassurance. 

                       

                      ND

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