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Leptomen

› Forums › General Melanoma Community › Leptomen

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      • February 14, 2014 at 2:11 pm
      joy_
      Participant

        Thanks for sharing this, Jerry.  This is where we are now.  I updated my profile in case I might be able to help anyone else in this boat because I know everyone else's posts and profiles have helped me educate myself, or maybe you can help us!

        Looks like we have a few lepto fighters/caregivers here.  Would love to hear from you.

        We are headed back for more MRI's (entire spine) and lumbar puncture.  Still working on getting an appt. at MDA.  The weather in Atlanta shut everything down for a couple of days so we haven't gotten anywhere yet but it was a good time for us to get some other things in order.

         

          • February 14, 2014 at 3:26 pm
          JerryfromFauq
          Participant

            I don't have the lepto, but was very close with Amy and we talked and actually met.  She provided much info for me to distribute to others in case she didn't survive.  She survived the Lepto, thanks to Dr Papa, but then GSK refused to allow her back in the BRAF trial that had gotten rid of most of her body tumors before the Lepto showed up. They had promised Dr Papa that she could re-enter the GKS BRAF trial if she remained clear of the Lepto for 2 months.  She remained clear, but they refused to allow Dr Papa to re-instate her in the trial. Tere's a group of us in a picture on Debbie's bed in Amy Griggs Busby's Facebook page.   I provided a copy of our phone conversations, emails and her MPIP posts and her carepages info to Snickers before my computer crashed last year and I lost part of my data.  It is a rough treatment at the start and is continued on an adjuvant basis for life, which for some has been over 15 years and still going..  

               Amy was a very special lady and deserved better than GSK treated her!

              . 

            • February 14, 2014 at 3:26 pm
            JerryfromFauq
            Participant

              I don't have the lepto, but was very close with Amy and we talked and actually met.  She provided much info for me to distribute to others in case she didn't survive.  She survived the Lepto, thanks to Dr Papa, but then GSK refused to allow her back in the BRAF trial that had gotten rid of most of her body tumors before the Lepto showed up. They had promised Dr Papa that she could re-enter the GKS BRAF trial if she remained clear of the Lepto for 2 months.  She remained clear, but they refused to allow Dr Papa to re-instate her in the trial. Tere's a group of us in a picture on Debbie's bed in Amy Griggs Busby's Facebook page.   I provided a copy of our phone conversations, emails and her MPIP posts and her carepages info to Snickers before my computer crashed last year and I lost part of my data.  It is a rough treatment at the start and is continued on an adjuvant basis for life, which for some has been over 15 years and still going..  

                 Amy was a very special lady and deserved better than GSK treated her!

                . 

              • February 14, 2014 at 3:26 pm
              JerryfromFauq
              Participant

                I don't have the lepto, but was very close with Amy and we talked and actually met.  She provided much info for me to distribute to others in case she didn't survive.  She survived the Lepto, thanks to Dr Papa, but then GSK refused to allow her back in the BRAF trial that had gotten rid of most of her body tumors before the Lepto showed up. They had promised Dr Papa that she could re-enter the GKS BRAF trial if she remained clear of the Lepto for 2 months.  She remained clear, but they refused to allow Dr Papa to re-instate her in the trial. Tere's a group of us in a picture on Debbie's bed in Amy Griggs Busby's Facebook page.   I provided a copy of our phone conversations, emails and her MPIP posts and her carepages info to Snickers before my computer crashed last year and I lost part of my data.  It is a rough treatment at the start and is continued on an adjuvant basis for life, which for some has been over 15 years and still going..  

                   Amy was a very special lady and deserved better than GSK treated her!

                  . 

              • February 14, 2014 at 2:11 pm
              joy_
              Participant

                Thanks for sharing this, Jerry.  This is where we are now.  I updated my profile in case I might be able to help anyone else in this boat because I know everyone else's posts and profiles have helped me educate myself, or maybe you can help us!

                Looks like we have a few lepto fighters/caregivers here.  Would love to hear from you.

                We are headed back for more MRI's (entire spine) and lumbar puncture.  Still working on getting an appt. at MDA.  The weather in Atlanta shut everything down for a couple of days so we haven't gotten anywhere yet but it was a good time for us to get some other things in order.

                 

                • February 14, 2014 at 2:11 pm
                joy_
                Participant

                  Thanks for sharing this, Jerry.  This is where we are now.  I updated my profile in case I might be able to help anyone else in this boat because I know everyone else's posts and profiles have helped me educate myself, or maybe you can help us!

                  Looks like we have a few lepto fighters/caregivers here.  Would love to hear from you.

                  We are headed back for more MRI's (entire spine) and lumbar puncture.  Still working on getting an appt. at MDA.  The weather in Atlanta shut everything down for a couple of days so we haven't gotten anywhere yet but it was a good time for us to get some other things in order.

                   

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