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Drug trial info
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Drug trial info

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  • Post
    • February 17, 2011 at 5:43 pm
    Carmon in NM
    Participant

      The clinical drug trial I'm on that is working so well for me is INST 0903: Phase II of Carboplatin,Paclitaxel, and Temozolomide

      The clinical drug trial I'm on that is working so well for me is INST 0903: Phase II of Carboplatin,Paclitaxel, and Temozolomide

      I was so happy when the protocol nurse told me that everyone at UNM on this trial has responded as well as I have. It was wonderful to post some good news on here, especially with so many newly diagnosed folks signing on. Except for those people with a known gene mutation, no one ever seems to know just why one person responds to a drug combo and the next one doesn't . Having 100% of the people here in this trial responding is pretty exciting! This combo is too new to have any idea about recurrance rates but I did find some info on the Phase I trial that set the dosage and one woman has remained NED for four years now.

      I'm also very happy that I only have one more infusion to go on March 14th! I'll have a consultation with the oncology surgeon then to talk about how she'll go about removing my adrenal gland and to set a date for that surgery. My husband commented this morning on the phone that I'm getting quite a collection of surgical scars. I told him it was a good thing that there is at least one man out there who 'digs women with scars'!

      Wishing you all out there equally happy results in whatever treatments you are in progress with! Carmon in NM

    Viewing 7 reply threads
    • Replies
        • February 17, 2011 at 6:53 pm
        dawn dion
        Participant

          Yea!!!! I am super excited for you

          • February 17, 2011 at 6:53 pm
          dawn dion
          Participant

            Yea!!!! I am super excited for you

            • February 17, 2011 at 10:48 pm
            mrsmarilyn
            Participant

              Thanks for sharing that great news!  Keep it up – and we have excellent success in the BRAF clinical my brother is on!

              MrsMarilyn

              • February 17, 2011 at 10:48 pm
              mrsmarilyn
              Participant

                Thanks for sharing that great news!  Keep it up – and we have excellent success in the BRAF clinical my brother is on!

                MrsMarilyn

                • February 21, 2011 at 2:21 am
                glewis923
                Participant

                  Hey Carmen-

                  Carboplatin / Pacitaxol / AND Avistan was what I was on for over 3 months and did keep my lung nodules "stable".  Maybe the Temozolomide (same as Temodar, right?) would have kept me from getting brain tumors.  My local Onc. didn't "recommend" me doing my normal 3-week round of above mentioned, as he thought it would not be good to do while getting cyber-knifed and then WBRad.  Not sure  I agree with him.  I may be on IPI trial by next week, and this particular trial does not include Temodar.  I'm thinking of "demanding" that from my local Dr. and dare him to tell the IPI trial Drs. , if that doesn't work, I'll buy it over the internet !!  

                  Am I thinking crazy?  I just want the works to get thrown at me and hope something sticks.  "They" keep saying that the answer most likely lies in the right combo of meds. that will fit key of individual's case.  So that's what I plan on doing, while i'm stillhealthy enough to do it.  Now i just have to convince the Drs.

                  Truly glad it's working for you, and you must have good taste in husbands !

                  Love, Grady & Family.

                    • March 6, 2011 at 3:45 am
                    LynnLuc
                    Participant

                      I was on Temodar 300 MG five days out of every 28 from  July 2009 to March 2010…it probably kept mine stable unil around January and when scaned in mid Feb it was found to have stop working…Mayo Clinic in Minnesota said melanoma usually outsmarts Temodar in 6 or 7 months and my response was typical…I thinkpersonally Ipi is a much better choice or PLX 4032/MEK inhibitor or something along those lines…

                      I was told though the Ted Kennedy was on Temdar for his brain mets ( nurse at Mayo had told me that when I was Rx'ed it.

                      • March 6, 2011 at 3:45 am
                      LynnLuc
                      Participant

                        I was on Temodar 300 MG five days out of every 28 from  July 2009 to March 2010…it probably kept mine stable unil around January and when scaned in mid Feb it was found to have stop working…Mayo Clinic in Minnesota said melanoma usually outsmarts Temodar in 6 or 7 months and my response was typical…I thinkpersonally Ipi is a much better choice or PLX 4032/MEK inhibitor or something along those lines…

                        I was told though the Ted Kennedy was on Temdar for his brain mets ( nurse at Mayo had told me that when I was Rx'ed it.

                      • February 21, 2011 at 2:21 am
                      glewis923
                      Participant

                        Hey Carmen-

                        Carboplatin / Pacitaxol / AND Avistan was what I was on for over 3 months and did keep my lung nodules "stable".  Maybe the Temozolomide (same as Temodar, right?) would have kept me from getting brain tumors.  My local Onc. didn't "recommend" me doing my normal 3-week round of above mentioned, as he thought it would not be good to do while getting cyber-knifed and then WBRad.  Not sure  I agree with him.  I may be on IPI trial by next week, and this particular trial does not include Temodar.  I'm thinking of "demanding" that from my local Dr. and dare him to tell the IPI trial Drs. , if that doesn't work, I'll buy it over the internet !!  

                        Am I thinking crazy?  I just want the works to get thrown at me and hope something sticks.  "They" keep saying that the answer most likely lies in the right combo of meds. that will fit key of individual's case.  So that's what I plan on doing, while i'm stillhealthy enough to do it.  Now i just have to convince the Drs.

                        Truly glad it's working for you, and you must have good taste in husbands !

                        Love, Grady & Family.

                        • February 21, 2011 at 1:54 pm
                        Suzan AB
                        Participant

                          Whoopee Carmon!  I am so excited for you too!  The doctors at UCSF want to put me on a Braf/Mek combo.  However, I will print out your post, just in case…LOL!

                          My best to you and Yours,

                          Suzan AB

                          Stage IV

                          Lung mets…ugh!

                          • February 21, 2011 at 1:54 pm
                          Suzan AB
                          Participant

                            Whoopee Carmon!  I am so excited for you too!  The doctors at UCSF want to put me on a Braf/Mek combo.  However, I will print out your post, just in case…LOL!

                            My best to you and Yours,

                            Suzan AB

                            Stage IV

                            Lung mets…ugh!

                        Viewing 7 reply threads
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