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Gamma Knife scheduled for Tuesday
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Gamma Knife scheduled for Tuesday

› Forums › General Melanoma Community › Gamma Knife scheduled for Tuesday

  • Post
    • June 27, 2013 at 11:33 pm
    NYKaren
    Participant
      First, thank you to all who responded to my post yesterday. I was deeply shaken and upset but once again, it’s time to pull up the bootstraps and move on.
      My husband and I met Dr. Greg Kondziolka today and liked him a lot. He showed us the scans and asked me how my hearing is in my right ear. When he showed me how much Mel is in the ear…it basically blocks everything. That was as scary as the brain mets.

      It’s kind of interesting that one of the larger brain tumors is dangerously close to the area that affect my speech. If I hadn’t insisted on stopping Zel for the PD1 trial, I wouldn’t have had the MRI, and I’d be talking oddly or not at all pretty soon.

      As I said, we liked the doc a lot… He was one of the builders of the gamma Knife system. The best thing about him is that he believes in sedation. (Well, one of the best.)
      NYU’s Gamma Knife machine was damaged during Sandy, so he does the procedure at 3 tri-state hospitals that have the exact same machine.
      We’ll be going to South Nassau Hospital, about 15 minutes from our house, which is good when you have to be there at 5:30 am.

      Also, yes the GSK trial does require 2 months out from treatment for brain mets, so I’m lucky to be going for Merck’s version.

      So, onward and upward, and I’ll let you know how it goes Tuesday.
      Karen

    Viewing 20 reply threads
    • Replies
        • June 27, 2013 at 11:56 pm
        Richard_K
        Participant
          Karen,
          Thanks for the update. We will be waiting for good news from you on your next post; don’t let us down.
          • June 27, 2013 at 11:56 pm
          Richard_K
          Participant
            Karen,
            Thanks for the update. We will be waiting for good news from you on your next post; don’t let us down.
            • June 27, 2013 at 11:56 pm
            Richard_K
            Participant
              Karen,
              Thanks for the update. We will be waiting for good news from you on your next post; don’t let us down.
              • June 27, 2013 at 11:58 pm
              Candi13
              Participant

                Karen,

                 

                I am so glad you like your doctor & you are going forward.

                I am new here so I am trying to learn about everything.

                When you have brain mets treated, will you be able to get into the Merck trial immediately, or do you have to wait a certain amount of time to prove to Merck that your brain mets are stable before Merck will let you in the trial?? If so, how long do you have to wait?

                Good Luck on Tuesday and thank you for responding to my question about Merck & waiting to get into trial.

                Justin

                 

                 

                  • June 28, 2013 at 12:22 am
                  NYKaren
                  Participant
                    Alison, if you look at the trial under exclusions, it clearly says “30 days,” not 60. Yes, I think I’ll be on a short course of steroid, don’t know about anti-seizure med. I’ll call tomorrow and ask.
                    • June 28, 2013 at 12:22 am
                    NYKaren
                    Participant
                      Alison, if you look at the trial under exclusions, it clearly says “30 days,” not 60. Yes, I think I’ll be on a short course of steroid, don’t know about anti-seizure med. I’ll call tomorrow and ask.
                      • June 28, 2013 at 12:22 am
                      NYKaren
                      Participant
                        Alison, if you look at the trial under exclusions, it clearly says “30 days,” not 60. Yes, I think I’ll be on a short course of steroid, don’t know about anti-seizure med. I’ll call tomorrow and ask.
                      • June 27, 2013 at 11:58 pm
                      Candi13
                      Participant

                        Karen,

                         

                        I am so glad you like your doctor & you are going forward.

                        I am new here so I am trying to learn about everything.

                        When you have brain mets treated, will you be able to get into the Merck trial immediately, or do you have to wait a certain amount of time to prove to Merck that your brain mets are stable before Merck will let you in the trial?? If so, how long do you have to wait?

                        Good Luck on Tuesday and thank you for responding to my question about Merck & waiting to get into trial.

                        Justin

                         

                         

                        • June 27, 2013 at 11:58 pm
                        Candi13
                        Participant

                          Karen,

                           

                          I am so glad you like your doctor & you are going forward.

                          I am new here so I am trying to learn about everything.

                          When you have brain mets treated, will you be able to get into the Merck trial immediately, or do you have to wait a certain amount of time to prove to Merck that your brain mets are stable before Merck will let you in the trial?? If so, how long do you have to wait?

                          Good Luck on Tuesday and thank you for responding to my question about Merck & waiting to get into trial.

                          Justin

                           

                           

                          • June 28, 2013 at 1:48 am
                          aldakota22
                          Participant

                            Prayers sent  your way for Tuesday's  procedure.Love your fighting spirit after hearing some frightning news.Keep that PMA .Expect  to see a great post. very soon . Beat the Beast.     Al

                            • June 28, 2013 at 1:48 am
                            aldakota22
                            Participant

                              Prayers sent  your way for Tuesday's  procedure.Love your fighting spirit after hearing some frightning news.Keep that PMA .Expect  to see a great post. very soon . Beat the Beast.     Al

                              • June 28, 2013 at 1:48 am
                              aldakota22
                              Participant

                                Prayers sent  your way for Tuesday's  procedure.Love your fighting spirit after hearing some frightning news.Keep that PMA .Expect  to see a great post. very soon . Beat the Beast.     Al

                                • June 28, 2013 at 9:05 am
                                Brendan
                                Participant
                                  Karen,
                                  Good luck to you. Glad you are , moving forward. Stay strong!

                                  Brendan

                                  • June 28, 2013 at 9:05 am
                                  Brendan
                                  Participant
                                    Karen,
                                    Good luck to you. Glad you are , moving forward. Stay strong!

                                    Brendan

                                    • June 28, 2013 at 9:05 am
                                    Brendan
                                    Participant
                                      Karen,
                                      Good luck to you. Glad you are , moving forward. Stay strong!

                                      Brendan

                                      • June 28, 2013 at 1:07 pm
                                      awillett1991
                                      Participant
                                        Good luck Karen! I will be thinking of you!!

                                        Amy

                                        • June 28, 2013 at 1:07 pm
                                        awillett1991
                                        Participant
                                          Good luck Karen! I will be thinking of you!!

                                          Amy

                                          • June 28, 2013 at 1:07 pm
                                          awillett1991
                                          Participant
                                            Good luck Karen! I will be thinking of you!!

                                            Amy

                                            • June 28, 2013 at 3:26 pm
                                            rosa1
                                            Participant

                                              Karen,

                                              I pray that everything goes well with you on Tuesday and beyond.  It sucks going thru this but unfortunately we are all in the same boat, but we have to keep strong and believe that God will be on  our side always.  Keep the faith!

                                              All the best/Rosa

                                              • June 28, 2013 at 3:26 pm
                                              rosa1
                                              Participant

                                                Karen,

                                                I pray that everything goes well with you on Tuesday and beyond.  It sucks going thru this but unfortunately we are all in the same boat, but we have to keep strong and believe that God will be on  our side always.  Keep the faith!

                                                All the best/Rosa

                                                • June 28, 2013 at 3:26 pm
                                                rosa1
                                                Participant

                                                  Karen,

                                                  I pray that everything goes well with you on Tuesday and beyond.  It sucks going thru this but unfortunately we are all in the same boat, but we have to keep strong and believe that God will be on  our side always.  Keep the faith!

                                                  All the best/Rosa

                                                  • June 28, 2013 at 4:34 pm
                                                  hbecker
                                                  Participant

                                                    Karen,

                                                       Thinking of you and sending all good vibes your way for Tuesday.

                                                    ~Hazel

                                                    • June 28, 2013 at 4:34 pm
                                                    hbecker
                                                    Participant

                                                      Karen,

                                                         Thinking of you and sending all good vibes your way for Tuesday.

                                                      ~Hazel

                                                      • June 28, 2013 at 4:34 pm
                                                      hbecker
                                                      Participant

                                                        Karen,

                                                           Thinking of you and sending all good vibes your way for Tuesday.

                                                        ~Hazel

                                                        • June 28, 2013 at 12:04 am
                                                        vivian
                                                        Participant

                                                          Hey Karen,

                                                          You and I were diagnosed at pretty much the same time, so I have been following your posts for a while now.  Thank you for sharing your wisdom and strength.   I will be holding you in the light on Tuesday, as always.  Go smack those stupid brain mets!

                                                          Lear

                                                          • June 28, 2013 at 12:04 am
                                                          vivian
                                                          Participant

                                                            Hey Karen,

                                                            You and I were diagnosed at pretty much the same time, so I have been following your posts for a while now.  Thank you for sharing your wisdom and strength.   I will be holding you in the light on Tuesday, as always.  Go smack those stupid brain mets!

                                                            Lear

                                                            • June 28, 2013 at 12:04 am
                                                            vivian
                                                            Participant

                                                              Hey Karen,

                                                              You and I were diagnosed at pretty much the same time, so I have been following your posts for a while now.  Thank you for sharing your wisdom and strength.   I will be holding you in the light on Tuesday, as always.  Go smack those stupid brain mets!

                                                              Lear

                                                              • June 28, 2013 at 12:10 am
                                                              NYKaren
                                                              Participant
                                                                Justin, it’s a 28-day wait. So I’ll have next MRI on day 28 & keep my fingers crossed.
                                                                • June 28, 2013 at 12:10 am
                                                                NYKaren
                                                                Participant
                                                                  Justin, it’s a 28-day wait. So I’ll have next MRI on day 28 & keep my fingers crossed.
                                                                  • June 28, 2013 at 12:10 am
                                                                  NYKaren
                                                                  Participant
                                                                    Justin, it’s a 28-day wait. So I’ll have next MRI on day 28 & keep my fingers crossed.
                                                                    • June 28, 2013 at 12:11 am
                                                                    killmel
                                                                    Participant

                                                                      Hi Karen

                                                                       

                                                                      My husband had brain met treated with gamma knife and is also waiting to get into the Merck trial.

                                                                      This is the trial:

                                                                      Study of MK-3475 Versus Chemotherapy in Participants With Advanced Melanoma (P08719/MK-3475-002 AM1)

                                                                      http://clinicaltrials.gov/ct2/show/NCT01704287

                                                                      My husband's doctor told us that we had to wait 8 weeks (2 months) before we go through the qualification process to get in the trial. My husband will have a brain MRI as part of the qualification process so that Merck will know that his brain met is "stable"

                                                                      KAREN,  how long have you been told that you have to wait before you can try to get into the Merck trial? Will you have to take STEROID or ANTI-SEIZURE MED. My husband is on both and is trying to cope with the meds

                                                                      Good Luck on Tuesday!

                                                                      Alison

                                                                      • June 28, 2013 at 12:11 am
                                                                      killmel
                                                                      Participant

                                                                        Hi Karen

                                                                         

                                                                        My husband had brain met treated with gamma knife and is also waiting to get into the Merck trial.

                                                                        This is the trial:

                                                                        Study of MK-3475 Versus Chemotherapy in Participants With Advanced Melanoma (P08719/MK-3475-002 AM1)

                                                                        http://clinicaltrials.gov/ct2/show/NCT01704287

                                                                        My husband's doctor told us that we had to wait 8 weeks (2 months) before we go through the qualification process to get in the trial. My husband will have a brain MRI as part of the qualification process so that Merck will know that his brain met is "stable"

                                                                        KAREN,  how long have you been told that you have to wait before you can try to get into the Merck trial? Will you have to take STEROID or ANTI-SEIZURE MED. My husband is on both and is trying to cope with the meds

                                                                        Good Luck on Tuesday!

                                                                        Alison

                                                                        • June 28, 2013 at 12:11 am
                                                                        killmel
                                                                        Participant

                                                                          Hi Karen

                                                                           

                                                                          My husband had brain met treated with gamma knife and is also waiting to get into the Merck trial.

                                                                          This is the trial:

                                                                          Study of MK-3475 Versus Chemotherapy in Participants With Advanced Melanoma (P08719/MK-3475-002 AM1)

                                                                          http://clinicaltrials.gov/ct2/show/NCT01704287

                                                                          My husband's doctor told us that we had to wait 8 weeks (2 months) before we go through the qualification process to get in the trial. My husband will have a brain MRI as part of the qualification process so that Merck will know that his brain met is "stable"

                                                                          KAREN,  how long have you been told that you have to wait before you can try to get into the Merck trial? Will you have to take STEROID or ANTI-SEIZURE MED. My husband is on both and is trying to cope with the meds

                                                                          Good Luck on Tuesday!

                                                                          Alison

                                                                          • June 28, 2013 at 12:13 am
                                                                          NYKaren
                                                                          Participant
                                                                            DK, thanks. I REALLY like Dr. P. I was very happy to be handed over to her because of all the good things you and Al have to say about her.
                                                                            • June 28, 2013 at 12:13 am
                                                                            NYKaren
                                                                            Participant
                                                                              DK, thanks. I REALLY like Dr. P. I was very happy to be handed over to her because of all the good things you and Al have to say about her.
                                                                              • June 28, 2013 at 12:13 am
                                                                              NYKaren
                                                                              Participant
                                                                                DK, thanks. I REALLY like Dr. P. I was very happy to be handed over to her because of all the good things you and Al have to say about her.
                                                                                • June 28, 2013 at 12:31 am
                                                                                killmel
                                                                                Participant

                                                                                  Karen, you are right about the "exclusions" statement saying 30 days but my doctor checked with the Medical Director at Merck and he told him that it is a 8 weeks /60 day waiting period.

                                                                                  Please ask you doctor to call the  Medical  Director at Merck to verify what is the CORRECT timeframe. I hope the Medical Director tells you doctor 30 days so that I can tell my doctor.

                                                                                  Please post what you find out.

                                                                                  Thanks,

                                                                                  Allison

                                                                                   

                                                                                  • June 28, 2013 at 12:31 am
                                                                                  killmel
                                                                                  Participant

                                                                                    Karen, you are right about the "exclusions" statement saying 30 days but my doctor checked with the Medical Director at Merck and he told him that it is a 8 weeks /60 day waiting period.

                                                                                    Please ask you doctor to call the  Medical  Director at Merck to verify what is the CORRECT timeframe. I hope the Medical Director tells you doctor 30 days so that I can tell my doctor.

                                                                                    Please post what you find out.

                                                                                    Thanks,

                                                                                    Allison

                                                                                     

                                                                                    • June 28, 2013 at 12:31 am
                                                                                    killmel
                                                                                    Participant

                                                                                      Karen, you are right about the "exclusions" statement saying 30 days but my doctor checked with the Medical Director at Merck and he told him that it is a 8 weeks /60 day waiting period.

                                                                                      Please ask you doctor to call the  Medical  Director at Merck to verify what is the CORRECT timeframe. I hope the Medical Director tells you doctor 30 days so that I can tell my doctor.

                                                                                      Please post what you find out.

                                                                                      Thanks,

                                                                                      Allison

                                                                                       

                                                                                      • June 28, 2013 at 12:38 am
                                                                                      killmel
                                                                                      Participant

                                                                                        Karen,

                                                                                        Just to clarify, it is 30 days "wash out" period from the last treatment  "Participating or has participated in a study of an investigational agent or using an investigational device within 30 days of the first dose of study drug"

                                                                                        I am talking about my doctor telling my husband that he had to wait 8 weeks/60 days from having radiation for his brain met. out doctor said the Medical director at Merck told him that it takes at least 8 weeks to determine if a brain met is stable.

                                                                                        Allison

                                                                                        • June 28, 2013 at 12:38 am
                                                                                        killmel
                                                                                        Participant

                                                                                          Karen,

                                                                                          Just to clarify, it is 30 days "wash out" period from the last treatment  "Participating or has participated in a study of an investigational agent or using an investigational device within 30 days of the first dose of study drug"

                                                                                          I am talking about my doctor telling my husband that he had to wait 8 weeks/60 days from having radiation for his brain met. out doctor said the Medical director at Merck told him that it takes at least 8 weeks to determine if a brain met is stable.

                                                                                          Allison

                                                                                          • June 28, 2013 at 12:38 am
                                                                                          killmel
                                                                                          Participant

                                                                                            Karen,

                                                                                            Just to clarify, it is 30 days "wash out" period from the last treatment  "Participating or has participated in a study of an investigational agent or using an investigational device within 30 days of the first dose of study drug"

                                                                                            I am talking about my doctor telling my husband that he had to wait 8 weeks/60 days from having radiation for his brain met. out doctor said the Medical director at Merck told him that it takes at least 8 weeks to determine if a brain met is stable.

                                                                                            Allison

                                                                                            • June 28, 2013 at 12:47 am
                                                                                            NYKaren
                                                                                            Participant
                                                                                              Vivian, I’m afraid to ask for fear of the answer.
                                                                                              But it does say “chemotherapy, radiation therapy or biological therapy within 4 weeks…”
                                                                                              Now we’re both confused. Seems odd that they’d print one thing and say another. Both the onc and neurosurgeon said 28 days. Hmmmm.
                                                                                              I will ask my onc & let you know.
                                                                                              • June 28, 2013 at 12:47 am
                                                                                              NYKaren
                                                                                              Participant
                                                                                                Vivian, I’m afraid to ask for fear of the answer.
                                                                                                But it does say “chemotherapy, radiation therapy or biological therapy within 4 weeks…”
                                                                                                Now we’re both confused. Seems odd that they’d print one thing and say another. Both the onc and neurosurgeon said 28 days. Hmmmm.
                                                                                                I will ask my onc & let you know.
                                                                                                • June 28, 2013 at 12:47 am
                                                                                                NYKaren
                                                                                                Participant
                                                                                                  Vivian, I’m afraid to ask for fear of the answer.
                                                                                                  But it does say “chemotherapy, radiation therapy or biological therapy within 4 weeks…”
                                                                                                  Now we’re both confused. Seems odd that they’d print one thing and say another. Both the onc and neurosurgeon said 28 days. Hmmmm.
                                                                                                  I will ask my onc & let you know.
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