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Temodar

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  • Post
    • January 8, 2014 at 3:23 pm
    tschmith
    Participant

      Has anyone had any positive results from Temodar? I am Stage IV.  I had a brain tumor (melanoma) removed in February of 2014.  There is a small nodule in my lung, right hip, and on the L2 vertebrae.  Most, but not all, of the tumor on the L2 was removed in October.  Two infusions of Yervoy resulted in Pituitary gland problems. The Pituitary has since recovered but my doctor does not want to continue with the Yervoy at this time. I am being treated at Johns Hopkins…we are also looking for clincal trials but something has to be done soon, which is why my doctor is considering Temodar.

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    • Replies
        • January 8, 2014 at 9:29 pm
        KRob
        Participant

          Yes, I am a stage IV (diagnosed 2005) who has used Temodar successfully. 

          Besides 2 lesions in the brain, I also had 2 tumors in left upper leg, 1 lg tumor in right lung, and 1 nodule in right arm pit. The brain lesions were first treated with gamma knife and 1 of my leg tumors had been surgically removed.

          I responded quickly with all lesions shrinking by 50% after the first couple of rounds. 

          I continued 360 mgs once a day for 5 days straight every 23 days for 16 months total.

          I have remained NED since.

          It's worth a try. I very much hope that you have good results too if you chose to use Temodar.

           

          Karen

            • January 20, 2014 at 10:24 pm
            tschmith
            Participant

              Thank you, Karen and I'm so happy you had such good results!  I being seen by two oncologists.  One planned to put me on Temodar until a clinical trial opens up.  The other feels I'm strong enough to try Interleukin 2.  I'm not sure what to do!  I'm really afraid of the side effects of Interleukin although my doctor, Geoffrey Weiss, is an expert in administering it. 

              All my best to you, Karen and I pray that you remain NED!

              Terrie

              • January 20, 2014 at 10:24 pm
              tschmith
              Participant

                Thank you, Karen and I'm so happy you had such good results!  I being seen by two oncologists.  One planned to put me on Temodar until a clinical trial opens up.  The other feels I'm strong enough to try Interleukin 2.  I'm not sure what to do!  I'm really afraid of the side effects of Interleukin although my doctor, Geoffrey Weiss, is an expert in administering it. 

                All my best to you, Karen and I pray that you remain NED!

                Terrie

                • January 20, 2014 at 10:24 pm
                tschmith
                Participant

                  Thank you, Karen and I'm so happy you had such good results!  I being seen by two oncologists.  One planned to put me on Temodar until a clinical trial opens up.  The other feels I'm strong enough to try Interleukin 2.  I'm not sure what to do!  I'm really afraid of the side effects of Interleukin although my doctor, Geoffrey Weiss, is an expert in administering it. 

                  All my best to you, Karen and I pray that you remain NED!

                  Terrie

                • January 8, 2014 at 9:29 pm
                KRob
                Participant

                  Yes, I am a stage IV (diagnosed 2005) who has used Temodar successfully. 

                  Besides 2 lesions in the brain, I also had 2 tumors in left upper leg, 1 lg tumor in right lung, and 1 nodule in right arm pit. The brain lesions were first treated with gamma knife and 1 of my leg tumors had been surgically removed.

                  I responded quickly with all lesions shrinking by 50% after the first couple of rounds. 

                  I continued 360 mgs once a day for 5 days straight every 23 days for 16 months total.

                  I have remained NED since.

                  It's worth a try. I very much hope that you have good results too if you chose to use Temodar.

                   

                  Karen

                  • January 8, 2014 at 9:29 pm
                  KRob
                  Participant

                    Yes, I am a stage IV (diagnosed 2005) who has used Temodar successfully. 

                    Besides 2 lesions in the brain, I also had 2 tumors in left upper leg, 1 lg tumor in right lung, and 1 nodule in right arm pit. The brain lesions were first treated with gamma knife and 1 of my leg tumors had been surgically removed.

                    I responded quickly with all lesions shrinking by 50% after the first couple of rounds. 

                    I continued 360 mgs once a day for 5 days straight every 23 days for 16 months total.

                    I have remained NED since.

                    It's worth a try. I very much hope that you have good results too if you chose to use Temodar.

                     

                    Karen

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