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No sense of urgency
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No sense of urgency

› Forums › General Melanoma Community › No sense of urgency

  • Post
    • February 8, 2016 at 3:06 pm
    scots
    Participant

      I have been told I need to get in Treatment as soon as possible, but where's the sense of urgency on the doctors / hospital part.  If I do not like what I here or they have limited or no options I have to start the whole process over. Contact a new specialist for an appointment go through all the paper to get files and reports and CDs of scans to the next doctor and all the while time is passing through my fingers .  I do not know why it's so hard for one doctor to refer you to another doctor and pass on all the records I spent weeks sending to them.  I know it's all on me but it would be nice to have some help and and cooperation between doctors. I have worked with my oncologist in town who is not a melanoma specialist.. He referred me to a Duke specialist. I'm waiting to hear if I qualify for a trial at Duke. I have also talked to NIH and sent them all my records. They said the TIL treatment is too risky for me. I also have an appointment at MSKCC in two weeks. Now they have all my records. With all that said I'm waiting…….I have liver mets after five years of NED. I have tried ippi and Opdivo but it did not work. I do not have the Brad mutation, I have a mekmutation which I have been told is rare.   I have filled out my profile if you would like to see detailed information on what I have done. I'm great full to a have great place like this to vent and find people in similar situations.

       

      thanks,

      scot

    Viewing 2 reply threads
    • Replies
        • February 8, 2016 at 4:14 pm
        MoiraM
        Participant

          I understand your need to vent.

          I am not an expert but maybe the temporary lack of treatment has a good side. If you are accepted for a trial surely they will want other treatments out of your system?

          Are there some drugs that target the MEK mutation waiting in the wings, ready to be called upon? Was that what Dr Salama was suggesting?

          I have no experience of the system in the USA, I am in the UK being treated on the NHS. The good thing about being treated in the NHS is that all my history and results are one one system that can be accessed by any NHS doctor I go to.

           

            • February 8, 2016 at 4:44 pm
            scots
            Participant

              Yes that was Dr. Salama trying to Get the insurance company to approve the MEK inhibitor because it is only approved for braf patients when the braf drugs no longer are working.They did not approve it for me so they are are going through the appeal process now, but that could take months.  She does have a clinical trial that they are trying to get me into. That could start next week.  I'm hoping that MSKCC in NY will have something to offer me.  That what make is so hard because there is not one repository for this information. If doctors would request it …. It's free..  Some offices will not do it. If I request it and ask for additional copies some place charge for my information . Thanks for the reply

              scot

              • February 8, 2016 at 4:44 pm
              scots
              Participant

                Yes that was Dr. Salama trying to Get the insurance company to approve the MEK inhibitor because it is only approved for braf patients when the braf drugs no longer are working.They did not approve it for me so they are are going through the appeal process now, but that could take months.  She does have a clinical trial that they are trying to get me into. That could start next week.  I'm hoping that MSKCC in NY will have something to offer me.  That what make is so hard because there is not one repository for this information. If doctors would request it …. It's free..  Some offices will not do it. If I request it and ask for additional copies some place charge for my information . Thanks for the reply

                scot

                • February 8, 2016 at 4:44 pm
                scots
                Participant

                  Yes that was Dr. Salama trying to Get the insurance company to approve the MEK inhibitor because it is only approved for braf patients when the braf drugs no longer are working.They did not approve it for me so they are are going through the appeal process now, but that could take months.  She does have a clinical trial that they are trying to get me into. That could start next week.  I'm hoping that MSKCC in NY will have something to offer me.  That what make is so hard because there is not one repository for this information. If doctors would request it …. It's free..  Some offices will not do it. If I request it and ask for additional copies some place charge for my information . Thanks for the reply

                  scot

                • February 8, 2016 at 4:14 pm
                MoiraM
                Participant

                  I understand your need to vent.

                  I am not an expert but maybe the temporary lack of treatment has a good side. If you are accepted for a trial surely they will want other treatments out of your system?

                  Are there some drugs that target the MEK mutation waiting in the wings, ready to be called upon? Was that what Dr Salama was suggesting?

                  I have no experience of the system in the USA, I am in the UK being treated on the NHS. The good thing about being treated in the NHS is that all my history and results are one one system that can be accessed by any NHS doctor I go to.

                   

                  • February 8, 2016 at 4:14 pm
                  MoiraM
                  Participant

                    I understand your need to vent.

                    I am not an expert but maybe the temporary lack of treatment has a good side. If you are accepted for a trial surely they will want other treatments out of your system?

                    Are there some drugs that target the MEK mutation waiting in the wings, ready to be called upon? Was that what Dr Salama was suggesting?

                    I have no experience of the system in the USA, I am in the UK being treated on the NHS. The good thing about being treated in the NHS is that all my history and results are one one system that can be accessed by any NHS doctor I go to.

                     

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