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feeling down and need advice
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feeling down and need advice

› Forums › General Melanoma Community › feeling down and need advice

  • Post
    • September 4, 2014 at 8:25 am
    starletwoman2007
    Participant
      I am a stage 4 patient with mets in my spleen liver and brain. I have tried vem and wbr but neither have worked. I was told that I will be put on temozolmide next but oncologist running out of options. Just wondered if anyone else has been in this situation and how they cooed

      Thanks

    Viewing 5 reply threads
    • Replies
        • September 4, 2014 at 11:54 am
        Cooper
        Participant

          There is hope and other options.  How about the braf/mek combo?  And Pembro is being approved shortly.  Have you tried IPI?

          • September 4, 2014 at 11:54 am
          Cooper
          Participant

            There is hope and other options.  How about the braf/mek combo?  And Pembro is being approved shortly.  Have you tried IPI?

            • September 4, 2014 at 11:54 am
            Cooper
            Participant

              There is hope and other options.  How about the braf/mek combo?  And Pembro is being approved shortly.  Have you tried IPI?

              • September 4, 2014 at 12:51 pm
              hannahcopeland1
              Participant

                Hi! I am stage 4 as well. I was diagnosed with leptomeningeal disease in my brain in april, which has a horrible prognosis. Things i was reading said i could die within 2 weeks. I was so devastated. I ended up in the hospital after a bad spell of headaches and vomitting and was there for 10 days undergoing WBR, and i started on ipi and temodar. i took the summer recooperating, finished ipi and temodar and I am still here and feeling pretty darn good. i still have a lot of work to do, but my last MRI show the lepto disease almost gone, so i am very lucky. I still have mets in my skull, spine, liver and lungs, but im able to be myself again and be happy. i am very thankful. 

                I start PD1 EAP on Monday so im looking forward to moving forward!

                have you done ipi? PD1 should be coming on the market soon as well. and both supposedly work in the brain. sounds like you still have options.

                 

                hang in there. I know how hard this stuff is.

                H

                • September 4, 2014 at 12:51 pm
                hannahcopeland1
                Participant

                  Hi! I am stage 4 as well. I was diagnosed with leptomeningeal disease in my brain in april, which has a horrible prognosis. Things i was reading said i could die within 2 weeks. I was so devastated. I ended up in the hospital after a bad spell of headaches and vomitting and was there for 10 days undergoing WBR, and i started on ipi and temodar. i took the summer recooperating, finished ipi and temodar and I am still here and feeling pretty darn good. i still have a lot of work to do, but my last MRI show the lepto disease almost gone, so i am very lucky. I still have mets in my skull, spine, liver and lungs, but im able to be myself again and be happy. i am very thankful. 

                  I start PD1 EAP on Monday so im looking forward to moving forward!

                  have you done ipi? PD1 should be coming on the market soon as well. and both supposedly work in the brain. sounds like you still have options.

                   

                  hang in there. I know how hard this stuff is.

                  H

                  • September 4, 2014 at 12:51 pm
                  hannahcopeland1
                  Participant

                    Hi! I am stage 4 as well. I was diagnosed with leptomeningeal disease in my brain in april, which has a horrible prognosis. Things i was reading said i could die within 2 weeks. I was so devastated. I ended up in the hospital after a bad spell of headaches and vomitting and was there for 10 days undergoing WBR, and i started on ipi and temodar. i took the summer recooperating, finished ipi and temodar and I am still here and feeling pretty darn good. i still have a lot of work to do, but my last MRI show the lepto disease almost gone, so i am very lucky. I still have mets in my skull, spine, liver and lungs, but im able to be myself again and be happy. i am very thankful. 

                    I start PD1 EAP on Monday so im looking forward to moving forward!

                    have you done ipi? PD1 should be coming on the market soon as well. and both supposedly work in the brain. sounds like you still have options.

                     

                    hang in there. I know how hard this stuff is.

                    H

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