Preparing for a Plan B

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  • Post
    • July 2, 2011 at 11:19 pm
    Lisa13
    Participant

      Next Friday, I have my second session with dacarbazine and then a CT scan 10 days later. I know this form of chemo has had little benefit, but I can only hope that my low tumour burden responds to it. I'm remaining hopeful, but in the back of my mind, I have to be prepared for a Plan B. That being said, my onc. suggested ipi if the dacarbazine works, but I want to know if anyone believes IL-2 is a better option or should I leave that as Plan C?

      Here's hoping I won't have to venture into Plan B.

      Lisa

      Next Friday, I have my second session with dacarbazine and then a CT scan 10 days later. I know this form of chemo has had little benefit, but I can only hope that my low tumour burden responds to it. I'm remaining hopeful, but in the back of my mind, I have to be prepared for a Plan B. That being said, my onc. suggested ipi if the dacarbazine works, but I want to know if anyone believes IL-2 is a better option or should I leave that as Plan C?

      Here's hoping I won't have to venture into Plan B.

      Lisa

    Viewing 5 reply threads
    • Replies
        • July 3, 2011 at 1:42 am
        FormerCaregiver
        Participant

          Lisa, I expect that the chemo will start working soon. Hopefully the CT scan will confirm
          that. Do you know if IL-2 treatment is available in your area?

          As I might have mentioned before, I wonder if you would be eligible for GM-CSF (Leukine)
          treatment? This, together with surgery could be another plan worth considering especially
          if your tumour burden remains low.

          Hope this helps.

          Frank from Australia

          • July 3, 2011 at 1:42 am
          FormerCaregiver
          Participant

            Lisa, I expect that the chemo will start working soon. Hopefully the CT scan will confirm
            that. Do you know if IL-2 treatment is available in your area?

            As I might have mentioned before, I wonder if you would be eligible for GM-CSF (Leukine)
            treatment? This, together with surgery could be another plan worth considering especially
            if your tumour burden remains low.

            Hope this helps.

            Frank from Australia

            • July 3, 2011 at 5:16 am
            LynnLuc
            Participant

              here's a good trial using anti pd 1 and ipi! 

              http://clinicaltrials.gov/ct2/show/NCT01024231

              • July 3, 2011 at 5:16 am
              LynnLuc
              Participant

                here's a good trial using anti pd 1 and ipi! 

                http://clinicaltrials.gov/ct2/show/NCT01024231

                  • July 4, 2011 at 1:50 am
                  boot2aboot
                  Participant

                    Lisa,

                    i am in the same boat…check out my last post…i got a lot of good responses from the vets..

                    boots

                    • July 4, 2011 at 1:50 am
                    boot2aboot
                    Participant

                      Lisa,

                      i am in the same boat…check out my last post…i got a lot of good responses from the vets..

                      boots

                      • July 4, 2011 at 10:16 pm
                      Lisa13
                      Participant

                        Both IL-2 and Leukine arn't offered in Canada, but my onc. can send me for it.  IL-2 was mentioned as a Plan C, so obviously he knows how to get access to it.  Leukine is a great option for maintenance and I've read many people have remained stable or NED after using this.   IPI will be the next treatment should decarbazine fail – but it won't :).

                        Boots, I'm so sorry that these mets have appeared for you.  I didn't have my lung mets tested to see if they were melanoma, but they grew slowly and 1 got to 1cm, so they didn't want to wait.  Hopefully you'll get some definate answers soon.

                        Lisa 

                        • July 4, 2011 at 10:16 pm
                        Lisa13
                        Participant

                          Both IL-2 and Leukine arn't offered in Canada, but my onc. can send me for it.  IL-2 was mentioned as a Plan C, so obviously he knows how to get access to it.  Leukine is a great option for maintenance and I've read many people have remained stable or NED after using this.   IPI will be the next treatment should decarbazine fail – but it won't :).

                          Boots, I'm so sorry that these mets have appeared for you.  I didn't have my lung mets tested to see if they were melanoma, but they grew slowly and 1 got to 1cm, so they didn't want to wait.  Hopefully you'll get some definate answers soon.

                          Lisa 

                        • July 5, 2011 at 10:00 pm
                        ValinMtl
                        Participant

                          Hi Lisa

                          Check out what Michael FL has to say under the string

                          Anonymous 6/25/2011

                          Dicarbazine apparently is a good approach prior to using ipilimumab. I took temodar..should have taken dicarbazine on hind sight. I was on the compassionate ipi trial in Montreal…First round of 4 treatments worked wonders on my cutaneous melanoma (100s..very blackening leg) in November…just today I was admiring how they have all cleared up…but alas, mel came up with another plan and I now have some nasty sub-qs as well as a growth in my lymph node. Second round was in March..only went on two treatments before I was booted off. You're right there is no biochem nor IL-2  being offered in Canada…so I'm off to NIH-NCI for surgery..flying there tomorrow…then surgery on Thursday.  Doing the following TIL trial:

                          http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

                          Would suggest ipi but if it's not working don't wait too long for next plan.  All the best…sounds wonderful and very fortunate if your doctor connect you up with IL-2 (don't know how…mine never mentioned it!).  Val

                            • July 6, 2011 at 12:34 am
                            Lisa13
                            Participant

                              Hi Val,

                              When I asked what my Plan C would be if ipi didn't work for me, my onc. said IL-2 without hesitating.  I don't know where I would go for this, but I assume I would have to travel. My onc. can also administer Yervoy without a compassionate use trial, so I was very pleased to hear that.  I'm hopeful that the dacarbazine will work and I won't need to use Yervoy just yet. The Decarbazine is very easy to tolerate – only 2 bad days, but this could change during my next session.

                              I'm so happy to hear you're off to NIH-NCI for surgery and participating in the TIL trial. This trial sounds so promising and may infact be the next best thing. I truly hope this works for you!  Princess Margaret in Toronto is working on this right now, but it won't be up and running for human trials for another 6 months. This would be something I would consider as well and plan to speak to him about this.

                              Best of luck to you Val!

                              Lisa

                              • July 6, 2011 at 12:52 am
                              ValinMtl
                              Participant

                                And I wish much success to you too Lisa!   WE CAN DO THIS!!   Val xx

                                • July 7, 2011 at 5:11 pm
                                boot2aboot
                                Participant

                                  Lisa,

                                  check out American Cancer Society and Cancer Care…they offer free flights to treatment…hope lodges to stay in…any comprehensive cancer hospital offers social workers who can help

                                  • July 7, 2011 at 5:11 pm
                                  boot2aboot
                                  Participant

                                    Lisa,

                                    check out American Cancer Society and Cancer Care…they offer free flights to treatment…hope lodges to stay in…any comprehensive cancer hospital offers social workers who can help

                                    • July 6, 2011 at 12:52 am
                                    ValinMtl
                                    Participant

                                      And I wish much success to you too Lisa!   WE CAN DO THIS!!   Val xx

                                      • July 6, 2011 at 12:34 am
                                      Lisa13
                                      Participant

                                        Hi Val,

                                        When I asked what my Plan C would be if ipi didn't work for me, my onc. said IL-2 without hesitating.  I don't know where I would go for this, but I assume I would have to travel. My onc. can also administer Yervoy without a compassionate use trial, so I was very pleased to hear that.  I'm hopeful that the dacarbazine will work and I won't need to use Yervoy just yet. The Decarbazine is very easy to tolerate – only 2 bad days, but this could change during my next session.

                                        I'm so happy to hear you're off to NIH-NCI for surgery and participating in the TIL trial. This trial sounds so promising and may infact be the next best thing. I truly hope this works for you!  Princess Margaret in Toronto is working on this right now, but it won't be up and running for human trials for another 6 months. This would be something I would consider as well and plan to speak to him about this.

                                        Best of luck to you Val!

                                        Lisa

                                      • July 5, 2011 at 10:00 pm
                                      ValinMtl
                                      Participant

                                        Hi Lisa

                                        Check out what Michael FL has to say under the string

                                        Anonymous 6/25/2011

                                        Dicarbazine apparently is a good approach prior to using ipilimumab. I took temodar..should have taken dicarbazine on hind sight. I was on the compassionate ipi trial in Montreal…First round of 4 treatments worked wonders on my cutaneous melanoma (100s..very blackening leg) in November…just today I was admiring how they have all cleared up…but alas, mel came up with another plan and I now have some nasty sub-qs as well as a growth in my lymph node. Second round was in March..only went on two treatments before I was booted off. You're right there is no biochem nor IL-2  being offered in Canada…so I'm off to NIH-NCI for surgery..flying there tomorrow…then surgery on Thursday.  Doing the following TIL trial:

                                        http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

                                        Would suggest ipi but if it's not working don't wait too long for next plan.  All the best…sounds wonderful and very fortunate if your doctor connect you up with IL-2 (don't know how…mine never mentioned it!).  Val

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