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Re-induction IPI; Brain; options/opinions needed.
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Re-induction IPI; Brain; options/opinions needed.

› Forums › General Melanoma Community › Re-induction IPI; Brain; options/opinions needed.

  • Post
    • November 4, 2011 at 12:26 am
    glewis923
    Participant

      Dear ALL:

      Brief history:  Multiple Lung MMel tumors since Sept. 2010.  Started Caboplatin/Taxol/Avistan.  Seemed to hold them stable. Jan. 26th 2011: Multiple brain tumors found after "clonus" rght. leg twitching/siezures.  Had 7 SRS's and WBR all of Feb.(11 to 14 tumors present, all but 2 or three under 1 cm.)

      Dear ALL:

      Brief history:  Multiple Lung MMel tumors since Sept. 2010.  Started Caboplatin/Taxol/Avistan.  Seemed to hold them stable. Jan. 26th 2011: Multiple brain tumors found after "clonus" rght. leg twitching/siezures.  Had 7 SRS's and WBR all of Feb.(11 to 14 tumors present, all but 2 or three under 1 cm.)

      March/April/May had IPI/ Yervoy 4 infusions) May scans show stable…..Aug. scans show some slight decreases in most lung tumors and brain pretty much stable.  Mid-Aug. started Zelboraf.  Oct. 1st scan shows most small lung tumors gone, and the 3 =/- 1 cm. lung tumors regressing (shrinking).  Brain still more or less stable -possible minimal shrinkage on all but one.

      QUESTIONS:   Since "something" at least kept me stable (with some shrinkage in lungs)  from March to Aug. , common sense tells me it had to be Yervoy  that kept me that way.  I also give Yervoy some credit for brain being mostly stable, although the immediate SRS and WBR in Feb. kept me alive initiallt at least.   !)  Would re-induction of Yervoy (along with contiuation of Zelboraf) be a reasonable proactive approach?   2)  Would some other or added thing- like temodar be an option?  Being that i know i still have several brain tumors that are most likely "alive", should I seek another round of SRS targets- 3 or so more?  

      Any ideas would be greatly appreciated.  I'm very lucky to still be alive now- considering the shear 3 of brain tumors initially found, but now that the Zelbofaf and remnants of Yervoy and radiation have kept me stable or regressed, shouldn't  I become as proactive as possible now and go for a "knockout punch"???

      Thanks for listening, and i'm thinking and praying for ALL of You……..I read the posts, but feel i can't add much to really help "clinically""  , but hope I help n my quiet "spiritually" .

       

      Love ALL, Grady.

    Viewing 8 reply threads
    • Replies
        • November 4, 2011 at 12:32 am
        glewis923
        Participant

          …..sorry, i meant "the shear # (not 3) of brain tumors initially found- which was 11 or 12 for sure with a couple of ?-able spots.

            • November 4, 2011 at 8:19 am
            Majalist
            Participant

              Hello Grady,

              I am afraid I can be of no help concerning your treatement, but I have read your history and I just want to say I have a great admiration for what you have been going through the last 2 years. I wish you the very best and a treatment that will stabilize you for a long periode to come. I am glad to see you find help in God; your and everyone's life is in his hands.

              All the best!

              Marleen

              • November 4, 2011 at 8:19 am
              Majalist
              Participant

                Hello Grady,

                I am afraid I can be of no help concerning your treatement, but I have read your history and I just want to say I have a great admiration for what you have been going through the last 2 years. I wish you the very best and a treatment that will stabilize you for a long periode to come. I am glad to see you find help in God; your and everyone's life is in his hands.

                All the best!

                Marleen

                • November 4, 2011 at 8:19 am
                Majalist
                Participant

                  Hello Grady,

                  I am afraid I can be of no help concerning your treatement, but I have read your history and I just want to say I have a great admiration for what you have been going through the last 2 years. I wish you the very best and a treatment that will stabilize you for a long periode to come. I am glad to see you find help in God; your and everyone's life is in his hands.

                  All the best!

                  Marleen

                • November 4, 2011 at 12:32 am
                glewis923
                Participant

                  …..sorry, i meant "the shear # (not 3) of brain tumors initially found- which was 11 or 12 for sure with a couple of ?-able spots.

                  • November 4, 2011 at 12:32 am
                  glewis923
                  Participant

                    …..sorry, i meant "the shear # (not 3) of brain tumors initially found- which was 11 or 12 for sure with a couple of ?-able spots.

                    • November 5, 2011 at 4:14 am
                    FormerCaregiver
                    Participant

                      Grady, I agree that it could be well be that Yervoy has kept the tumours fairly stable for a while. I wonder if IL-2, either alone or combined with more Yervoy would be beneficial to you at this point?

                      Temodar is a chemotherapy drug that is far less sophisticated in what it is designed to do, compared to newer treatments such as Yervoy. However, it may be good as a short-term drug to reduce the tumour load before other treatments are introduced.

                      As you know, there are no easy answers but I feel that sometimes there are glimmers of hope.

                      You are in my thoughts and prayers.

                      Frank from Australia

                        • November 5, 2011 at 12:11 pm
                        Lisa13
                        Participant

                          Hi Grady,

                          My suggestion would be to gamma knife the 3 that may be alive and get back into ipi. Your lungs became stable with ipi, it's possible it also did the same thing to your brain mets, so I would definately re-do it.   Since you've also gone ahead and killed as much cells in your brain as you could with WBR, ipi may continue to work.

                          Best of luck!

                          Lisa 

                          • November 5, 2011 at 12:11 pm
                          Lisa13
                          Participant

                            Hi Grady,

                            My suggestion would be to gamma knife the 3 that may be alive and get back into ipi. Your lungs became stable with ipi, it's possible it also did the same thing to your brain mets, so I would definately re-do it.   Since you've also gone ahead and killed as much cells in your brain as you could with WBR, ipi may continue to work.

                            Best of luck!

                            Lisa 

                            • November 5, 2011 at 12:11 pm
                            Lisa13
                            Participant

                              Hi Grady,

                              My suggestion would be to gamma knife the 3 that may be alive and get back into ipi. Your lungs became stable with ipi, it's possible it also did the same thing to your brain mets, so I would definately re-do it.   Since you've also gone ahead and killed as much cells in your brain as you could with WBR, ipi may continue to work.

                              Best of luck!

                              Lisa 

                            • November 5, 2011 at 4:14 am
                            FormerCaregiver
                            Participant

                              Grady, I agree that it could be well be that Yervoy has kept the tumours fairly stable for a while. I wonder if IL-2, either alone or combined with more Yervoy would be beneficial to you at this point?

                              Temodar is a chemotherapy drug that is far less sophisticated in what it is designed to do, compared to newer treatments such as Yervoy. However, it may be good as a short-term drug to reduce the tumour load before other treatments are introduced.

                              As you know, there are no easy answers but I feel that sometimes there are glimmers of hope.

                              You are in my thoughts and prayers.

                              Frank from Australia

                              • November 5, 2011 at 4:14 am
                              FormerCaregiver
                              Participant

                                Grady, I agree that it could be well be that Yervoy has kept the tumours fairly stable for a while. I wonder if IL-2, either alone or combined with more Yervoy would be beneficial to you at this point?

                                Temodar is a chemotherapy drug that is far less sophisticated in what it is designed to do, compared to newer treatments such as Yervoy. However, it may be good as a short-term drug to reduce the tumour load before other treatments are introduced.

                                As you know, there are no easy answers but I feel that sometimes there are glimmers of hope.

                                You are in my thoughts and prayers.

                                Frank from Australia

                                • November 5, 2011 at 2:28 pm
                                nickmac56
                                Participant

                                  you might look into Abraxane, a chemo which crosses the blood brain barrier. My wife was on it, but unfortunately has had to cease that treatment for unrelated reasons. 

                                  • November 5, 2011 at 2:28 pm
                                  nickmac56
                                  Participant

                                    you might look into Abraxane, a chemo which crosses the blood brain barrier. My wife was on it, but unfortunately has had to cease that treatment for unrelated reasons. 

                                    • November 5, 2011 at 2:28 pm
                                    nickmac56
                                    Participant

                                      you might look into Abraxane, a chemo which crosses the blood brain barrier. My wife was on it, but unfortunately has had to cease that treatment for unrelated reasons. 

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