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Stage IV – Clinical Trial Treatment – Now spot on the brain

Forums General Melanoma Community Stage IV – Clinical Trial Treatment – Now spot on the brain

  • Post
    rballard23071
    Participant

      So yesterday I received bad news from my oncologist.  I was first diagnosed with a melanoma on my leg in June of 2011.  It was removed with no lymphnode removal and I was great for 2 years.  In June of this year – the melanoma returned in the same spot – this time at a stage IV. I have a tumor on my leg and tiny tumors in my lungs and abdomen.  I was placed on a clinical trial that uses Ipi – Yervoy and Novumulab? PD1.  I just finished the Yervoy and went for scans and there is now a spot on my brain.  The CT scans showed shrinkage in the other tumors – but the spot on the brain could disqualify me from the trial.  If the Neurosurgeon thinks it will help – they are planning some type of radiology to target the spot on my brain.  Has anyone else gone through this?  I need some support.  I felt like I was doing everything right – and now this.  Thanks.

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    • Replies
        awillett1991
        Participant

          I recently left a PD1 trial in favor of surgery. It just wasn't working well enough for me.  Maybe that is the case for you, Ipi just wasn't enough. There is nothing you did that brought the brain met, I also know how devastating that diagnosis can be.  There are lots of stage 4 survivors here including myself, that have dealt with brain mets and are still here fighting. Never give up!!

          Amy

          awillett1991
          Participant

            I recently left a PD1 trial in favor of surgery. It just wasn't working well enough for me.  Maybe that is the case for you, Ipi just wasn't enough. There is nothing you did that brought the brain met, I also know how devastating that diagnosis can be.  There are lots of stage 4 survivors here including myself, that have dealt with brain mets and are still here fighting. Never give up!!

            Amy

            awillett1991
            Participant

              I recently left a PD1 trial in favor of surgery. It just wasn't working well enough for me.  Maybe that is the case for you, Ipi just wasn't enough. There is nothing you did that brought the brain met, I also know how devastating that diagnosis can be.  There are lots of stage 4 survivors here including myself, that have dealt with brain mets and are still here fighting. Never give up!!

              Amy

              Cooper
              Participant

                Treatment for brain mets has gotten very good!  Here is a link to a really good webinar by Yale neurosurgeon about gamma knife which is what you will be doing.  Once the brain met is zapped and you are stable you can go back on the trial most likely.  Here's the link:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.Umw6H_XD_Z4

                 

                Cooper
                Participant

                  Treatment for brain mets has gotten very good!  Here is a link to a really good webinar by Yale neurosurgeon about gamma knife which is what you will be doing.  Once the brain met is zapped and you are stable you can go back on the trial most likely.  Here's the link:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.Umw6H_XD_Z4

                   

                  Cooper
                  Participant

                    Treatment for brain mets has gotten very good!  Here is a link to a really good webinar by Yale neurosurgeon about gamma knife which is what you will be doing.  Once the brain met is zapped and you are stable you can go back on the trial most likely.  Here's the link:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.Umw6H_XD_Z4

                     

                    killmel
                    Participant

                      Hello,

                       

                      I am so sorry to hear about your brain met but as other have stated many have survived having SRS or gama knife to zap brain mets.

                      Who is the sponsor of your trial? Is it BMS?

                      You mentioned "the spot on the brain could disqualify me from the trial", did your onc tell you that you will be kicked off the trial??? If you have the brain met radiated, would you be kicked off the trial??

                      I am trying to learn what is allowed on these clinical trials, so it would be helpful if any one can tell me if you get a brain met, you automatically get kicked of a trial?

                      Thanks for replying to my post.

                      Bertha

                       

                      killmel
                      Participant

                        Hello,

                         

                        I am so sorry to hear about your brain met but as other have stated many have survived having SRS or gama knife to zap brain mets.

                        Who is the sponsor of your trial? Is it BMS?

                        You mentioned "the spot on the brain could disqualify me from the trial", did your onc tell you that you will be kicked off the trial??? If you have the brain met radiated, would you be kicked off the trial??

                        I am trying to learn what is allowed on these clinical trials, so it would be helpful if any one can tell me if you get a brain met, you automatically get kicked of a trial?

                        Thanks for replying to my post.

                        Bertha

                         

                          awillett1991
                          Participant

                            It depends on the individual trial so you never know. I had 2 brain mets but as long as we didn't treat them I could stay on. Brain mets were supposed to be treated and stable for 4 weeks before applying for the trial but tese were so tiny they were missed. 

                            awillett1991
                            Participant

                              It depends on the individual trial so you never know. I had 2 brain mets but as long as we didn't treat them I could stay on. Brain mets were supposed to be treated and stable for 4 weeks before applying for the trial but tese were so tiny they were missed. 

                              awillett1991
                              Participant

                                It depends on the individual trial so you never know. I had 2 brain mets but as long as we didn't treat them I could stay on. Brain mets were supposed to be treated and stable for 4 weeks before applying for the trial but tese were so tiny they were missed. 

                              killmel
                              Participant

                                Hello,

                                 

                                I am so sorry to hear about your brain met but as other have stated many have survived having SRS or gama knife to zap brain mets.

                                Who is the sponsor of your trial? Is it BMS?

                                You mentioned "the spot on the brain could disqualify me from the trial", did your onc tell you that you will be kicked off the trial??? If you have the brain met radiated, would you be kicked off the trial??

                                I am trying to learn what is allowed on these clinical trials, so it would be helpful if any one can tell me if you get a brain met, you automatically get kicked of a trial?

                                Thanks for replying to my post.

                                Bertha

                                 

                                LuckyMan51
                                Participant

                                  Did you end up doing Radiostatic/Cyber knife (bunch of different names used) surgery to remove the brain tumor?   The stats on the effectiveness are very high.   If you can remove it can you reenter what looks to be a great trial?  Although I just had brain tumor surgically removed the pathology showed 90% dead so it did see some benefit from prior radiation and yervoy combo.   Currently ned and doing followup radiostatic to clean up any stray cells and combining with more yervoy.   Anti pd1 was my first choice but brain tumor had shut me out. Yervoy and radiation not a bad second option.  Good luck.  

                                  LuckyMan51
                                  Participant

                                    Did you end up doing Radiostatic/Cyber knife (bunch of different names used) surgery to remove the brain tumor?   The stats on the effectiveness are very high.   If you can remove it can you reenter what looks to be a great trial?  Although I just had brain tumor surgically removed the pathology showed 90% dead so it did see some benefit from prior radiation and yervoy combo.   Currently ned and doing followup radiostatic to clean up any stray cells and combining with more yervoy.   Anti pd1 was my first choice but brain tumor had shut me out. Yervoy and radiation not a bad second option.  Good luck.  

                                    LuckyMan51
                                    Participant

                                      Did you end up doing Radiostatic/Cyber knife (bunch of different names used) surgery to remove the brain tumor?   The stats on the effectiveness are very high.   If you can remove it can you reenter what looks to be a great trial?  Although I just had brain tumor surgically removed the pathology showed 90% dead so it did see some benefit from prior radiation and yervoy combo.   Currently ned and doing followup radiostatic to clean up any stray cells and combining with more yervoy.   Anti pd1 was my first choice but brain tumor had shut me out. Yervoy and radiation not a bad second option.  Good luck.  

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