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Anyone out there with NRAS Q61 mutation? Or on Ipilimumab? Recently diagnosed Stage 4 with NRAS Q6 mutation. Any help?

Forums General Melanoma Community Anyone out there with NRAS Q61 mutation? Or on Ipilimumab? Recently diagnosed Stage 4 with NRAS Q6 mutation. Any help?

  • Post
    rbruce
    Participant

    Diagnosed with Melanoma in March.  PET/CT showed tiny tumors in my lungs so now I'm stage 4.  Testing showed that i have the Wild Type mutation NRAS Q61.  Before testing UCSF was talking about the new inhibitors for BRAF that are showing great success, but not for NRAS Q61 mutation.  This week I visited Dr. Steven O'Day at the Angeles Clinic in Los Angeles who suggested Ipilimumab and then Dr.

    Diagnosed with Melanoma in March.  PET/CT showed tiny tumors in my lungs so now I'm stage 4.  Testing showed that i have the Wild Type mutation NRAS Q61.  Before testing UCSF was talking about the new inhibitors for BRAF that are showing great success, but not for NRAS Q61 mutation.  This week I visited Dr. Steven O'Day at the Angeles Clinic in Los Angeles who suggested Ipilimumab and then Dr. Daud at UCSF the next day who is suggesting Carboplatin and Taxol in conjunction with Axitinib (A UCSF clinical trial).  Any thoughts, experiences, suggestions, ideas would be most welcome as I have to make a decision soon.  Thank you so much!    Robert

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  • Replies
      Terra
      Participant

      Hi my husband, Derek, is NRAS positive although I am not sure what the Q61 is that you are talking about.  My husband just started a P13K/ MEK trial in Toronto at Princess Margaret with Dr. Bedard.  You can find it on clinical trials.org or search it on here b/c I just posted an article about it from STATOncology – he has been on it for a month, just had scans last week and will have results next week.  

      Terra

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      Terra
      Participant

      Hi my husband, Derek, is NRAS positive although I am not sure what the Q61 is that you are talking about.  My husband just started a P13K/ MEK trial in Toronto at Princess Margaret with Dr. Bedard.  You can find it on clinical trials.org or search it on here b/c I just posted an article about it from STATOncology – he has been on it for a month, just had scans last week and will have results next week.  

      Terra

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        rbruce
        Participant

        Thanks Terra for posting.  The Dr. just told me that I did not have the BRAF mutation, which there are a number of new therapies for, but instead had what he called Q61-NRAS.  Not sure what the Q61 stands for either but I'm going to find out this week.  I will look up the trial.  May I ask how you settled on this particular trial?   I have seen 2 different Melanoma Docs with 2 different recommendations.  I see over 300 clinical trials on line for Melanoma and am on overload trying to figure it all out.  Is Derek stage IV?  How long did it take before you settled on a treatment.  The waiting for me is extremely difficult and it is all rattling around in my head constantly. 

        How is he doing with the treatment?  I pray that he is feeling okay, that his scans are good and that both of you are doing well.  I know that it is my wife Lisa's love and support that helps me everyday, that and my faith give me hope as I move forward. 

        Robert

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        MichaelFL
        Participant

        Fifteen percent of all human melanomas carry mutations in RAS genes, the majority of which are located in codon 61 of the N-RAS ontogeny.

        NRAS—Exon 3:

        Q61K 

        Q61L

        Q61R

        NRAS—Exon 2:

        G13R

        G13D

        Oncogenic N-RAS is thought to activate a series of signal transduction pathways crucial for the control of growth signals, cell survival and invasion of melanoma cells. In other words, NRAS mutation (and BRAF mutation)leads to activation of the MAP kinase pathway. Melanoma appears to depend on MAP kinase activation for survival, and develops mutations in either BRAF or NRAS to accomplish this.

        A variety of molecules in various stages of development target these pathways. NRAS requires post-translational myristoylation, and farnesyl transferase inhibitors which I believe are being tested as a way to block NRAS activity.

        Scientists are working on an approach that curtails Ras activity which may represent a sensible approach to inhibit melanoma growth.

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        rbruce
        Participant

        Frank,

        Thank you so much for your incredibly detailed message.  Although very technical, my limited research to date has given me enough knowledge to begin to understand your remarks.  Are you in medicine or did you learn this because of your own battle with Melanoma?  I have printed your note in order to begin deeper conversations with my Doc. 

        Again, thank you.

        Robert

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        rbruce
        Participant

        Frank,

        Thank you so much for your incredibly detailed message.  Although very technical, my limited research to date has given me enough knowledge to begin to understand your remarks.  Are you in medicine or did you learn this because of your own battle with Melanoma?  I have printed your note in order to begin deeper conversations with my Doc. 

        Again, thank you.

        Robert

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        MichaelFL
        Participant

        Fifteen percent of all human melanomas carry mutations in RAS genes, the majority of which are located in codon 61 of the N-RAS ontogeny.

        NRAS—Exon 3:

        Q61K 

        Q61L

        Q61R

        NRAS—Exon 2:

        G13R

        G13D

        Oncogenic N-RAS is thought to activate a series of signal transduction pathways crucial for the control of growth signals, cell survival and invasion of melanoma cells. In other words, NRAS mutation (and BRAF mutation)leads to activation of the MAP kinase pathway. Melanoma appears to depend on MAP kinase activation for survival, and develops mutations in either BRAF or NRAS to accomplish this.

        A variety of molecules in various stages of development target these pathways. NRAS requires post-translational myristoylation, and farnesyl transferase inhibitors which I believe are being tested as a way to block NRAS activity.

        Scientists are working on an approach that curtails Ras activity which may represent a sensible approach to inhibit melanoma growth.

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        lhaley
        Participant

        Robert,

        You said that you have seen 2 different mel Docs with 2 different recommendations. The reason for this may be that is what their hospital has to offer. Unfortunately we often have to do our own research. Too often we are only offered what that particular hospital has a trial with. 

        Wishing you the best in your research and finding the right option that you feel comfortable with.

        Linda

        Stage IV since 06

        stable – there is hope!

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        rbruce
        Participant

        Linda,

        Thank you for your response, I'm so glad I found this Board because it's posts and stories like yours that keep me focused on moving forward and not the disease.  I just read your proile, what a warrior!  I especially love your tag line, stable- there is hope! 

        Take good care and God Bless.

        Robert

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        rbruce
        Participant

        Linda,

        Thank you for your response, I'm so glad I found this Board because it's posts and stories like yours that keep me focused on moving forward and not the disease.  I just read your proile, what a warrior!  I especially love your tag line, stable- there is hope! 

        Take good care and God Bless.

        Robert

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        lhaley
        Participant

        Robert,

        You said that you have seen 2 different mel Docs with 2 different recommendations. The reason for this may be that is what their hospital has to offer. Unfortunately we often have to do our own research. Too often we are only offered what that particular hospital has a trial with. 

        Wishing you the best in your research and finding the right option that you feel comfortable with.

        Linda

        Stage IV since 06

        stable – there is hope!

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        rbruce
        Participant

        Thanks Terra for posting.  The Dr. just told me that I did not have the BRAF mutation, which there are a number of new therapies for, but instead had what he called Q61-NRAS.  Not sure what the Q61 stands for either but I'm going to find out this week.  I will look up the trial.  May I ask how you settled on this particular trial?   I have seen 2 different Melanoma Docs with 2 different recommendations.  I see over 300 clinical trials on line for Melanoma and am on overload trying to figure it all out.  Is Derek stage IV?  How long did it take before you settled on a treatment.  The waiting for me is extremely difficult and it is all rattling around in my head constantly. 

        How is he doing with the treatment?  I pray that he is feeling okay, that his scans are good and that both of you are doing well.  I know that it is my wife Lisa's love and support that helps me everyday, that and my faith give me hope as I move forward. 

        Robert

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      FormerCaregiver
      Participant

      Just thought that I would say a bit about the treatment options that may be available to you.
      Some experimental treatments certainly look promising, although it is really difficult to
      predict what will work best for each person.

      I am not familiar with Axitinib, but I have found some info about it at:
      http://74.125.155.132/scholar?q=cache:PLXGSrUs_3UJ:scholar.google.com/+Axitinib+melanoma&hl=en&as_sdt=0,5

      Carboplatin and Taxol are chemothereapy drugs that have been around for a long time.

      Some of the most promising options (depending on eligibility criteria) include:
      Yervoy (ipilimumab)
      GM-CSF (Leukine) and surgery when needed
      OncoVex
      Adoptive cell therapy

      Hope this helps.

      Frank from Australia

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      FormerCaregiver
      Participant

      Just thought that I would say a bit about the treatment options that may be available to you.
      Some experimental treatments certainly look promising, although it is really difficult to
      predict what will work best for each person.

      I am not familiar with Axitinib, but I have found some info about it at:
      http://74.125.155.132/scholar?q=cache:PLXGSrUs_3UJ:scholar.google.com/+Axitinib+melanoma&hl=en&as_sdt=0,5

      Carboplatin and Taxol are chemothereapy drugs that have been around for a long time.

      Some of the most promising options (depending on eligibility criteria) include:
      Yervoy (ipilimumab)
      GM-CSF (Leukine) and surgery when needed
      OncoVex
      Adoptive cell therapy

      Hope this helps.

      Frank from Australia

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        rbruce
        Participant

        Thank you Frank.  I had not seen the article you included on Axitinib and it gives me some good info.  One of my Docs recommended ipilimumab and I'm reading about it. 

        Robert

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        rbruce
        Participant

        Thank you Frank.  I had not seen the article you included on Axitinib and it gives me some good info.  One of my Docs recommended ipilimumab and I'm reading about it. 

        Robert

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      JRW
      Participant

      Robert,

      I suggest you check out getting "TIL Therapy" treatment by Dr. Rosenberg's team at the National Cancer Institute. His results are among the best possible for late stage melanoma. Here is my email if you have questions [email protected]. I can email a paper to you for you and your doctor to review that gives there latest outcomes. I think that if you are accepted into their clinical study all costs are covered but I am not sure.

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        Terra
        Participant

        I lost my first response to you and will have to be quick this time – two youngs kids out of bed! 

        Derek is stage 4, melanoma in his liver, lung, bone, muscle, and possibly kidney.  Our onc was very excited about this trial and thought it was a better option then ipi to get the growth under control right away.  Derek has been feeling very good on the trial, he does not feel the pressure and twinges he was feeling before he starteed the treament.  He has some anxiety and a small rash on his face but it has all been kept under control, he is doing everything he normally would with a little fatigue.  As I understand the NRAS gene is further up the pathway then the BRAF so should theortically work the same way.  We have will get scan results on Thursday and then again at the end of May.  i will post the early results.

        We are also in Canada, so we don;t have quite the options you may have in the states.

        Good luck in your decision.

        Terra  

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        Terra
        Participant

        I lost my first response to you and will have to be quick this time – two youngs kids out of bed! 

        Derek is stage 4, melanoma in his liver, lung, bone, muscle, and possibly kidney.  Our onc was very excited about this trial and thought it was a better option then ipi to get the growth under control right away.  Derek has been feeling very good on the trial, he does not feel the pressure and twinges he was feeling before he starteed the treament.  He has some anxiety and a small rash on his face but it has all been kept under control, he is doing everything he normally would with a little fatigue.  As I understand the NRAS gene is further up the pathway then the BRAF so should theortically work the same way.  We have will get scan results on Thursday and then again at the end of May.  i will post the early results.

        We are also in Canada, so we don;t have quite the options you may have in the states.

        Good luck in your decision.

        Terra  

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        rbruce
        Participant

        John,

        I tried sending you an e-mail requesting the paper you mention but it bounced back.  Can you please send it to me at:

        [email protected]?  I'd really appreciate it.

        Robert

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        rbruce
        Participant

        John,

        I tried sending you an e-mail requesting the paper you mention but it bounced back.  Can you please send it to me at:

        [email protected]?  I'd really appreciate it.

        Robert

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        ValinMtl
        Participant

        I would love a copy of the latest update on trials as well..Many thanks, Val

        [email protected]

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        ValinMtl
        Participant

        I would love a copy of the latest update on trials as well..Many thanks, Val

        [email protected]

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      JRW
      Participant

      Robert,

      I suggest you check out getting "TIL Therapy" treatment by Dr. Rosenberg's team at the National Cancer Institute. His results are among the best possible for late stage melanoma. Here is my email if you have questions [email protected]. I can email a paper to you for you and your doctor to review that gives there latest outcomes. I think that if you are accepted into their clinical study all costs are covered but I am not sure.

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      dssaims
      Participant

      My father has stage 4 and was able to get in on the Ipilimumab trial under a "compassionate use."  He was lucky, it worked and ALL his tumors either disappeared completely or shrunk markedly (and he was able to only have two of the four treatments).  He's been fine for a year and a half although now it looks like one tumor may have come back so the Angeles Clinic is testing him to see if he can take the NRAS treatment. 

      Good luck!

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      dssaims
      Participant

      My father has stage 4 and was able to get in on the Ipilimumab trial under a "compassionate use."  He was lucky, it worked and ALL his tumors either disappeared completely or shrunk markedly (and he was able to only have two of the four treatments).  He's been fine for a year and a half although now it looks like one tumor may have come back so the Angeles Clinic is testing him to see if he can take the NRAS treatment. 

      Good luck!

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