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RobinS

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      RobinS
      Participant

      Thank you very much for your response – I really appreciate all of your suggestions.

      My mother is being treated at the Cleveland Clinic and she has received mixed recommendations.  An oncologist who specializes in hematology recommended Yervoy but the oncologist who specializes in melanoma said that the side effects were too dangerous at her age and indicated that 30% of patients on the trial end up in the hospital treating the side effects.

      Interferon he suggested but said it is a trade-off and a decision she can make.  The flu-like symptoms and fatigue will take away a year of her life with only a 10% chance for an improved outcome.  So I am looking into vaccines that might have fewer, less severe side effects so she can enjoy the next year.  

      I don't think she has been tested for the BRAF mutation but it is on my list to ask the oncologist next week.  I am disappointed in the Cleveland Clinic because they didn't do a tumor board for her case and she is getting different input from every doctor she has seen.  So I would like to take her to a true melanoma clinic to get a second opinion and potentially find a clinical trial that better fits her needs.

      I appreciate the time you have taken to respond.  Take care.

      RobinS
      Participant

      Thank you very much for your response – I really appreciate all of your suggestions.

      My mother is being treated at the Cleveland Clinic and she has received mixed recommendations.  An oncologist who specializes in hematology recommended Yervoy but the oncologist who specializes in melanoma said that the side effects were too dangerous at her age and indicated that 30% of patients on the trial end up in the hospital treating the side effects.

      Interferon he suggested but said it is a trade-off and a decision she can make.  The flu-like symptoms and fatigue will take away a year of her life with only a 10% chance for an improved outcome.  So I am looking into vaccines that might have fewer, less severe side effects so she can enjoy the next year.  

      I don't think she has been tested for the BRAF mutation but it is on my list to ask the oncologist next week.  I am disappointed in the Cleveland Clinic because they didn't do a tumor board for her case and she is getting different input from every doctor she has seen.  So I would like to take her to a true melanoma clinic to get a second opinion and potentially find a clinical trial that better fits her needs.

      I appreciate the time you have taken to respond.  Take care.

      RobinS
      Participant

      Thank you very much for your response – I really appreciate all of your suggestions.

      My mother is being treated at the Cleveland Clinic and she has received mixed recommendations.  An oncologist who specializes in hematology recommended Yervoy but the oncologist who specializes in melanoma said that the side effects were too dangerous at her age and indicated that 30% of patients on the trial end up in the hospital treating the side effects.

      Interferon he suggested but said it is a trade-off and a decision she can make.  The flu-like symptoms and fatigue will take away a year of her life with only a 10% chance for an improved outcome.  So I am looking into vaccines that might have fewer, less severe side effects so she can enjoy the next year.  

      I don't think she has been tested for the BRAF mutation but it is on my list to ask the oncologist next week.  I am disappointed in the Cleveland Clinic because they didn't do a tumor board for her case and she is getting different input from every doctor she has seen.  So I would like to take her to a true melanoma clinic to get a second opinion and potentially find a clinical trial that better fits her needs.

      I appreciate the time you have taken to respond.  Take care.

      RobinS
      Participant

      Thank you for your reply.  How long ago were you diagnosed?  Did you have any adjuvent therapy?  What is NED? I will be sure my mother is tested for the BRAF mutation.  I have read about that and there are better options if she has the mutation.

      Best of luck to you and your friend.  And thank you.

      RobinS
      Participant

      Thank you for your reply.  How long ago were you diagnosed?  Did you have any adjuvent therapy?  What is NED? I will be sure my mother is tested for the BRAF mutation.  I have read about that and there are better options if she has the mutation.

      Best of luck to you and your friend.  And thank you.

      RobinS
      Participant

      Thank you for your reply.  How long ago were you diagnosed?  Did you have any adjuvent therapy?  What is NED? I will be sure my mother is tested for the BRAF mutation.  I have read about that and there are better options if she has the mutation.

      Best of luck to you and your friend.  And thank you.

      RobinS
      Participant

      Thank you – my Mom is seeing a Melanoma specialist at the Cleveland Clinic.  I think he is aware of the options but he is not really aggressive.  I also don't believe Cleveland has a multi-disciplinary melanoma team and there has been no tumor board.

      Good luck to you and your Dad  –  I wish you the very best.

      RobinS
      Participant

      Thank you – my Mom is seeing a Melanoma specialist at the Cleveland Clinic.  I think he is aware of the options but he is not really aggressive.  I also don't believe Cleveland has a multi-disciplinary melanoma team and there has been no tumor board.

      Good luck to you and your Dad  –  I wish you the very best.

      RobinS
      Participant

      Thank you – my Mom is seeing a Melanoma specialist at the Cleveland Clinic.  I think he is aware of the options but he is not really aggressive.  I also don't believe Cleveland has a multi-disciplinary melanoma team and there has been no tumor board.

      Good luck to you and your Dad  –  I wish you the very best.

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