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Update on BigDaddy5 – NRAS mutation confirmed
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Update on BigDaddy5 – NRAS mutation confirmed

› Forums › General Melanoma Community › Update on BigDaddy5 – NRAS mutation confirmed

  • Post
    • April 18, 2016 at 4:09 pm
    Bigdaddy5
    Participant

       

      Hi:

      I had my excision surgery to remove the remants (post-shave-biopsy) of a 2.6 mm tumor from my torso on 2/24.  Officially stage IIa.  We requested that they genetically test the tumor for BRAF or NRAS mutation and the results took about a month.  I was confirmed to have the NRAS mutation today

      So other than diet and exercise – I will just hope, wait, pray for the best.  NRAS does not sound like a good thing should the next round of this personal war erupt down the road.

      Any other adjuvant type activities recommended?

      Thanks,

      Neil D

    Viewing 5 reply threads
    • Replies
        • April 18, 2016 at 4:27 pm
        BrianP
        Participant

          Neil,

          I can relate to the feeling of not being Braf +.  You feel like you have one less bullet in your gun to fight this beast.  I will let you know however (and hopefully Celeste or someone can back me up because I don't have the studies in front of me) patients with NRAS mutation have had a statistically significant improvement in response to anti-PD1 drugs over other mutations.

          As far as adjuvant activities there are a whole host of alternative activities you can do but I don't know if they make a difference.  Things I've personally done is reduce sugar, excercise, green tea daily, smoothies, organic fruits and vegetables.  I haven't gone the supplement route but if I were I'd be open to vitamin D and curcumin.  I think doing many of these type things helps you to feel more empowered which improves your psychological and mental health which can be very significant. 

          Brian

            • April 18, 2016 at 5:47 pm
            jenny22
            Participant

              I will echo what Brian said regarding NRAS patients responding well to immunotherapy drugs….i have read and been told the same…I too have the NRAS mutation.  When first discovered I was concerned but after several discussions with assorted ONCs, I realize now it doesnt seem to have any doom and gloom attached to it, and is really just more for treatment down the road.

              One other thing  I'll add….though I've never been a Vitamin and or supplement "taker", I did ask my NYU oncologist if there were any she would reccommend. She said there are 3 that she reccommends to her all her melanoma patients. 

              They are:

              Tumeric (1000mb 2x a day)

              Resveratrol (500 mg 1x a day)

              Paba (1000 mg 2x a day)

              I have also been told VIT D too….

               

              Best of luck,

              jenny

               

               

               

               

              • April 18, 2016 at 7:43 pm
              kylez
              Participant

                Did they tell either of you which NRAS mutation? I think a mutation at 'Q61' is maybe more common than 'G12A'  which what they found in mine. I believe both locations are considered sugnificant for melanoma.

                I believe this terminology refers to where exactly in the DNA the mutation is licated.I.e.,for BRAF their can be mutations at different locations. 'V600E' and 'V600K' are the ones considered drivers for melanoma. 

                Thanks. Also like Jemny and Brian I've heard the same about immunotherapy and NRAS mutations. Hope you get some relief soon.

                • April 18, 2016 at 7:43 pm
                kylez
                Participant

                  Did they tell either of you which NRAS mutation? I think a mutation at 'Q61' is maybe more common than 'G12A'  which what they found in mine. I believe both locations are considered sugnificant for melanoma.

                  I believe this terminology refers to where exactly in the DNA the mutation is licated.I.e.,for BRAF their can be mutations at different locations. 'V600E' and 'V600K' are the ones considered drivers for melanoma. 

                  Thanks. Also like Jemny and Brian I've heard the same about immunotherapy and NRAS mutations. Hope you get some relief soon.

                  • April 19, 2016 at 3:05 pm
                  Bigdaddy5
                  Participant

                    I have the Q61 designation as well.  Thanks for your feedback!

                     

                    Neil D

                    • April 19, 2016 at 3:05 pm
                    Bigdaddy5
                    Participant

                      I have the Q61 designation as well.  Thanks for your feedback!

                       

                      Neil D

                      • April 19, 2016 at 3:05 pm
                      Bigdaddy5
                      Participant

                        I have the Q61 designation as well.  Thanks for your feedback!

                         

                        Neil D

                        • April 18, 2016 at 7:43 pm
                        kylez
                        Participant

                          Did they tell either of you which NRAS mutation? I think a mutation at 'Q61' is maybe more common than 'G12A'  which what they found in mine. I believe both locations are considered sugnificant for melanoma.

                          I believe this terminology refers to where exactly in the DNA the mutation is licated.I.e.,for BRAF their can be mutations at different locations. 'V600E' and 'V600K' are the ones considered drivers for melanoma. 

                          Thanks. Also like Jemny and Brian I've heard the same about immunotherapy and NRAS mutations. Hope you get some relief soon.

                          • April 19, 2016 at 3:09 pm
                          Bigdaddy5
                          Participant

                            Such a strange road to travel. Sharing a silly analogy – Feels almost like Road Runner not sure when Coyote was going to attempt to drop an Acme boulder on his head. He didn't seem too concerned – perhaps there's a lesson in there for us adjuvant types to keep running down the road. 

                             

                            Thanks!

                             

                            neil D

                            • April 19, 2016 at 3:09 pm
                            Bigdaddy5
                            Participant

                              Such a strange road to travel. Sharing a silly analogy – Feels almost like Road Runner not sure when Coyote was going to attempt to drop an Acme boulder on his head. He didn't seem too concerned – perhaps there's a lesson in there for us adjuvant types to keep running down the road. 

                               

                              Thanks!

                               

                              neil D

                              • April 19, 2016 at 3:09 pm
                              Bigdaddy5
                              Participant

                                Such a strange road to travel. Sharing a silly analogy – Feels almost like Road Runner not sure when Coyote was going to attempt to drop an Acme boulder on his head. He didn't seem too concerned – perhaps there's a lesson in there for us adjuvant types to keep running down the road. 

                                 

                                Thanks!

                                 

                                neil D

                                • April 18, 2016 at 5:47 pm
                                jenny22
                                Participant

                                  I will echo what Brian said regarding NRAS patients responding well to immunotherapy drugs….i have read and been told the same…I too have the NRAS mutation.  When first discovered I was concerned but after several discussions with assorted ONCs, I realize now it doesnt seem to have any doom and gloom attached to it, and is really just more for treatment down the road.

                                  One other thing  I'll add….though I've never been a Vitamin and or supplement "taker", I did ask my NYU oncologist if there were any she would reccommend. She said there are 3 that she reccommends to her all her melanoma patients. 

                                  They are:

                                  Tumeric (1000mb 2x a day)

                                  Resveratrol (500 mg 1x a day)

                                  Paba (1000 mg 2x a day)

                                  I have also been told VIT D too….

                                   

                                  Best of luck,

                                  jenny

                                   

                                   

                                   

                                   

                                  • April 18, 2016 at 5:47 pm
                                  jenny22
                                  Participant

                                    I will echo what Brian said regarding NRAS patients responding well to immunotherapy drugs….i have read and been told the same…I too have the NRAS mutation.  When first discovered I was concerned but after several discussions with assorted ONCs, I realize now it doesnt seem to have any doom and gloom attached to it, and is really just more for treatment down the road.

                                    One other thing  I'll add….though I've never been a Vitamin and or supplement "taker", I did ask my NYU oncologist if there were any she would reccommend. She said there are 3 that she reccommends to her all her melanoma patients. 

                                    They are:

                                    Tumeric (1000mb 2x a day)

                                    Resveratrol (500 mg 1x a day)

                                    Paba (1000 mg 2x a day)

                                    I have also been told VIT D too….

                                     

                                    Best of luck,

                                    jenny

                                     

                                     

                                     

                                     

                                    • April 19, 2016 at 3:12 pm
                                    Bigdaddy5
                                    Participant

                                      Thanks Brian!

                                      I appreciate the feedback. I'm going to look into what the heck an anti-PD1 is exactly and review Celeste' blog. 

                                       

                                      Neil D

                                      • April 19, 2016 at 3:12 pm
                                      Bigdaddy5
                                      Participant

                                        Thanks Brian!

                                        I appreciate the feedback. I'm going to look into what the heck an anti-PD1 is exactly and review Celeste' blog. 

                                         

                                        Neil D

                                        • April 19, 2016 at 3:12 pm
                                        Bigdaddy5
                                        Participant

                                          Thanks Brian!

                                          I appreciate the feedback. I'm going to look into what the heck an anti-PD1 is exactly and review Celeste' blog. 

                                           

                                          Neil D

                                        • April 18, 2016 at 4:27 pm
                                        BrianP
                                        Participant

                                          Neil,

                                          I can relate to the feeling of not being Braf +.  You feel like you have one less bullet in your gun to fight this beast.  I will let you know however (and hopefully Celeste or someone can back me up because I don't have the studies in front of me) patients with NRAS mutation have had a statistically significant improvement in response to anti-PD1 drugs over other mutations.

                                          As far as adjuvant activities there are a whole host of alternative activities you can do but I don't know if they make a difference.  Things I've personally done is reduce sugar, excercise, green tea daily, smoothies, organic fruits and vegetables.  I haven't gone the supplement route but if I were I'd be open to vitamin D and curcumin.  I think doing many of these type things helps you to feel more empowered which improves your psychological and mental health which can be very significant. 

                                          Brian

                                          • April 18, 2016 at 4:27 pm
                                          BrianP
                                          Participant

                                            Neil,

                                            I can relate to the feeling of not being Braf +.  You feel like you have one less bullet in your gun to fight this beast.  I will let you know however (and hopefully Celeste or someone can back me up because I don't have the studies in front of me) patients with NRAS mutation have had a statistically significant improvement in response to anti-PD1 drugs over other mutations.

                                            As far as adjuvant activities there are a whole host of alternative activities you can do but I don't know if they make a difference.  Things I've personally done is reduce sugar, excercise, green tea daily, smoothies, organic fruits and vegetables.  I haven't gone the supplement route but if I were I'd be open to vitamin D and curcumin.  I think doing many of these type things helps you to feel more empowered which improves your psychological and mental health which can be very significant. 

                                            Brian

                                            • April 19, 2016 at 1:11 am
                                            Bubbles
                                            Participant

                                              Brian's got this…and so do you, Big Daddy/Neil!! (Those names seem disperate…feel the need to hear the story!!!) but……I digress.  You have options should you ever need them…..here's just a bit:

                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/good-news-for-nras-positive-folks.html

                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/stopping-resistance-to-targeted-therapy.html

                                              Ask away should questions arise.  Brian knows all this stuff (even if he shuffles his feet!!!)  I wish you well!  celeste

                                              • April 19, 2016 at 1:11 am
                                              Bubbles
                                              Participant

                                                Brian's got this…and so do you, Big Daddy/Neil!! (Those names seem disperate…feel the need to hear the story!!!) but……I digress.  You have options should you ever need them…..here's just a bit:

                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/good-news-for-nras-positive-folks.html

                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/stopping-resistance-to-targeted-therapy.html

                                                Ask away should questions arise.  Brian knows all this stuff (even if he shuffles his feet!!!)  I wish you well!  celeste

                                                  • April 19, 2016 at 3:04 pm
                                                  Bigdaddy5
                                                  Participant

                                                    Thanks to you Celeste. I'm trying to understand what I'm reading. It'll come – but I wish I was more science-inclined while in school!

                                                     

                                                    Neil D

                                                    • April 19, 2016 at 3:04 pm
                                                    Bigdaddy5
                                                    Participant

                                                      Thanks to you Celeste. I'm trying to understand what I'm reading. It'll come – but I wish I was more science-inclined while in school!

                                                       

                                                      Neil D

                                                      • April 19, 2016 at 7:38 pm
                                                      scots
                                                      Participant

                                                        Neil,

                                                        i do not have the nras or braf mutation. I have a MEK mutation which appears to be rare.  I have liver mets.

                                                        i have been to several hospitals. I'm now getting ready to be treated at Memorial Sloan Kettering Cancer Center In New York City.  The research trial is called the 'ERK' research trial. There is a protocol #.  Now  we just need more testing on rare mutations,

                                                         

                                                        Scot

                                                        • April 19, 2016 at 7:38 pm
                                                        scots
                                                        Participant

                                                          Neil,

                                                          i do not have the nras or braf mutation. I have a MEK mutation which appears to be rare.  I have liver mets.

                                                          i have been to several hospitals. I'm now getting ready to be treated at Memorial Sloan Kettering Cancer Center In New York City.  The research trial is called the 'ERK' research trial. There is a protocol #.  Now  we just need more testing on rare mutations,

                                                           

                                                          Scot

                                                          • April 20, 2016 at 1:33 am
                                                          Bigdaddy5
                                                          Participant

                                                            Scot:

                                                            Im adding you to my prayers!  

                                                             

                                                            ND

                                                            • April 20, 2016 at 1:33 am
                                                            Bigdaddy5
                                                            Participant

                                                              Scot:

                                                              Im adding you to my prayers!  

                                                               

                                                              ND

                                                              • April 20, 2016 at 1:33 am
                                                              Bigdaddy5
                                                              Participant

                                                                Scot:

                                                                Im adding you to my prayers!  

                                                                 

                                                                ND

                                                                • April 20, 2016 at 1:41 am
                                                                BrianP
                                                                Participant

                                                                  Scot, I was just recently thinking about you and hoping you had found something.  You are at a great place in MSK.  Best of luck to you.

                                                                  • April 20, 2016 at 1:41 am
                                                                  BrianP
                                                                  Participant

                                                                    Scot, I was just recently thinking about you and hoping you had found something.  You are at a great place in MSK.  Best of luck to you.

                                                                    • April 20, 2016 at 1:41 am
                                                                    BrianP
                                                                    Participant

                                                                      Scot, I was just recently thinking about you and hoping you had found something.  You are at a great place in MSK.  Best of luck to you.

                                                                      • April 19, 2016 at 7:38 pm
                                                                      scots
                                                                      Participant

                                                                        Neil,

                                                                        i do not have the nras or braf mutation. I have a MEK mutation which appears to be rare.  I have liver mets.

                                                                        i have been to several hospitals. I'm now getting ready to be treated at Memorial Sloan Kettering Cancer Center In New York City.  The research trial is called the 'ERK' research trial. There is a protocol #.  Now  we just need more testing on rare mutations,

                                                                         

                                                                        Scot

                                                                        • April 19, 2016 at 3:04 pm
                                                                        Bigdaddy5
                                                                        Participant

                                                                          Thanks to you Celeste. I'm trying to understand what I'm reading. It'll come – but I wish I was more science-inclined while in school!

                                                                           

                                                                          Neil D

                                                                        • April 19, 2016 at 1:11 am
                                                                        Bubbles
                                                                        Participant

                                                                          Brian's got this…and so do you, Big Daddy/Neil!! (Those names seem disperate…feel the need to hear the story!!!) but……I digress.  You have options should you ever need them…..here's just a bit:

                                                                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/good-news-for-nras-positive-folks.html

                                                                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/stopping-resistance-to-targeted-therapy.html

                                                                          Ask away should questions arise.  Brian knows all this stuff (even if he shuffles his feet!!!)  I wish you well!  celeste

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