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adowneyar

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      adowneyar
      Participant

      She was given the chemo combo because her melanoma was completely removed after surgery.   Her melanoma specialist is with Mayo now, but he was with Anderson.  This chemo combo is given to mucosal melanoma cases where the melanoma has been completely removed and it's an adjuvant therapy used to prevent the melanoma from returning.  It is only used with mucosal cases.    If Thnk if you Google cisplatin/Temodar with mucosal melanoma you should be able to find the study used.  It has great statistics of the melanoma not returning if able to complete.  Unfortunatley, her bloodwork went crazy… And trying to get it back up prolonged the use of the chemo.    And vaginal melanomas are very aggressive and it returned!  So here we are!   

      Does your combo of immunotherapy effect your blood the way chemo does with patients? 

       

      adowneyar
      Participant

      She was given the chemo combo because her melanoma was completely removed after surgery.   Her melanoma specialist is with Mayo now, but he was with Anderson.  This chemo combo is given to mucosal melanoma cases where the melanoma has been completely removed and it's an adjuvant therapy used to prevent the melanoma from returning.  It is only used with mucosal cases.    If Thnk if you Google cisplatin/Temodar with mucosal melanoma you should be able to find the study used.  It has great statistics of the melanoma not returning if able to complete.  Unfortunatley, her bloodwork went crazy… And trying to get it back up prolonged the use of the chemo.    And vaginal melanomas are very aggressive and it returned!  So here we are!   

      Does your combo of immunotherapy effect your blood the way chemo does with patients? 

       

      adowneyar
      Participant

      She was given the chemo combo because her melanoma was completely removed after surgery.   Her melanoma specialist is with Mayo now, but he was with Anderson.  This chemo combo is given to mucosal melanoma cases where the melanoma has been completely removed and it's an adjuvant therapy used to prevent the melanoma from returning.  It is only used with mucosal cases.    If Thnk if you Google cisplatin/Temodar with mucosal melanoma you should be able to find the study used.  It has great statistics of the melanoma not returning if able to complete.  Unfortunatley, her bloodwork went crazy… And trying to get it back up prolonged the use of the chemo.    And vaginal melanomas are very aggressive and it returned!  So here we are!   

      Does your combo of immunotherapy effect your blood the way chemo does with patients? 

       

      adowneyar
      Participant

      Thank you for your response!   Great to hear from someone with mucosal melanoma. How have your side effects been with your treatment plan?  Her blood work went crazy with the chemo combo they tried with her as an approach to prevent it from reoccurring.  Her platelets never recovered enough to resume before she had places return.  How have your side effects been on your plan?  

      Any information would be great!   Thank you! 

      adowneyar
      Participant

      Thank you for your response!   Great to hear from someone with mucosal melanoma. How have your side effects been with your treatment plan?  Her blood work went crazy with the chemo combo they tried with her as an approach to prevent it from reoccurring.  Her platelets never recovered enough to resume before she had places return.  How have your side effects been on your plan?  

      Any information would be great!   Thank you! 

      adowneyar
      Participant

      Thank you for your response!   Great to hear from someone with mucosal melanoma. How have your side effects been with your treatment plan?  Her blood work went crazy with the chemo combo they tried with her as an approach to prevent it from reoccurring.  Her platelets never recovered enough to resume before she had places return.  How have your side effects been on your plan?  

      Any information would be great!   Thank you! 

      adowneyar
      Participant

      when her doctor sent off for all testing he asked for the complete testing of all.  However,  only the NRAS and BRAF came back.   He was going to inquire about that again as well.   

       

      adowneyar
      Participant

      when her doctor sent off for all testing he asked for the complete testing of all.  However,  only the NRAS and BRAF came back.   He was going to inquire about that again as well.   

       

      adowneyar
      Participant

      when her doctor sent off for all testing he asked for the complete testing of all.  However,  only the NRAS and BRAF came back.   He was going to inquire about that again as well.   

       

      adowneyar
      Participant

      Wow, thank you once again.   Lots of information to take in and understand.  Still trying to wrap my head around it all.  

       

       

      adowneyar
      Participant

      Wow, thank you once again.   Lots of information to take in and understand.  Still trying to wrap my head around it all.  

       

       

      adowneyar
      Participant

      Wow, thank you once again.   Lots of information to take in and understand.  Still trying to wrap my head around it all.  

       

       

      adowneyar
      Participant

      Thank you!  I was thinking that maybe Keytruda might be an option, but when I did a little search, the Keytruda website mentioned one must have abnormal BRAF, so that really confused me.  Thank you again.  Hoping to get more information tomorrow.  We knew this was going to be aggressive,  just didn't realize how aggressive!

      Thank you again….

      adowneyar
      Participant

      Thank you!  I was thinking that maybe Keytruda might be an option, but when I did a little search, the Keytruda website mentioned one must have abnormal BRAF, so that really confused me.  Thank you again.  Hoping to get more information tomorrow.  We knew this was going to be aggressive,  just didn't realize how aggressive!

      Thank you again….

      adowneyar
      Participant

      Thank you!  I was thinking that maybe Keytruda might be an option, but when I did a little search, the Keytruda website mentioned one must have abnormal BRAF, so that really confused me.  Thank you again.  Hoping to get more information tomorrow.  We knew this was going to be aggressive,  just didn't realize how aggressive!

      Thank you again….

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