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Specialist Report

Forums General Melanoma Community Specialist Report

  • Post
    DeniseK
    Participant

      Hello Again It's me!

      I went to the specialist again yesterday.  I asked a bunch of questions that I know some of you were curious about.

      First of all I have a new game plan.  My doctor is switching my Z to debrafenib, he said this BRAF inhibitor has been proven to cross the brain barrier.  I will stay on  Z until the Deb comes then take 1/2 dose while keeping on the Ipi infusions.  He wants me to complete the 4 course cycle of Ipi.  I will also still have gamma knife next week.  

      Hello Again It's me!

      I went to the specialist again yesterday.  I asked a bunch of questions that I know some of you were curious about.

      First of all I have a new game plan.  My doctor is switching my Z to debrafenib, he said this BRAF inhibitor has been proven to cross the brain barrier.  I will stay on  Z until the Deb comes then take 1/2 dose while keeping on the Ipi infusions.  He wants me to complete the 4 course cycle of Ipi.  I will also still have gamma knife next week.  

      We are still talking trial but not for a few months until I complete Ipi.  I asked about stability in the brain and if you had to be stable from MRI to MRI or from last Radiation/Gamma/or SRS procedure.  There are 2 criteria.  One is brain MRI to MRI stable for 8 weeks, the second is a 4 week washout period from radiation or treatments.  

      I guess I'm not worrying about that right now since it's going to take me 9 more weeks to complete Ipi.  He also said Ipi ususally doesn't start working right away.  I know a lot of you know this already but I didn't.  He said it could take it 3-5 months for it to kick in.  I was shocked that we're going to wait that long but like he said, "if it works then we don't have to worry about a trial."  

      I'm staying positive and optimistic.  A lot of what if's going on in my head but also a lot of hope. 

      Denise

    Viewing 24 reply threads
    • Replies
        ecc26
        Participant

          Hi Denise,

          Interesting about the Debrafenib, I haven't come across any information about any of the BRAF inhibitors crossing the BBB, though I admit I haven't been looking much lately. If that's true (I'll trust your specialist) it's good to know.

          Yes, the Ipi can take a very long time to "kick-in". It's one of the things that made me very uneasy about going with it vs starting a trial (I was hoping for one of the Ipi/PD1 combo trials). My concern was- ok, it can take a while to start working, but what if it doesn't work? Now I'm 4-6 months progressed and worse off- then what? I'm still a bit uneasy about it to tell the truth, but here I am on much the same treatment plan as you having been denied (as you were) the clinical trials due to brain mets. 

          I also had a check in appointment today (with my local oncologist, not my specialist) and aired some of the same "what if's", uneasiness, and fears that you probably have. I also got what sounds like a similar response- hang in there and stay positive. I have a lot of subcutaneous disease and since starting Ipi things seem to at least be stable for me (just hoping it hasn't changed gears and started internally). You mentioned in a previous post that you thought one of your subQ's was maybe startng to shrink. Hold on to that as a happy thought. 

          I suspect that both our doctors have a similar goal in mind- at the very least hold us stable long enought to get into a trial, at best kick this thing to the curb with the Ipi. I told my doctor today that I'd feel better if things were shrinking, not just staying stable and that I had concerns about the longevity of any response once I finish the Ipi (I had a very fast relapse after completing what appeared to be a successful course of IL2). He basically said we won't know until we know, but that at lest for now things appear stable and I should be happy about that. I am, really, but I do worry. 

          All we can do for now is cross our fingers and stay positive. It's true- if it works, we don't need a trial and PD1 will be there and FDA approved should we need it in the future. Hold on to that, enjoy the summer (if you're not dying of heat) and I wish you all the best!

          -Eva

          ecc26
          Participant

            Hi Denise,

            Interesting about the Debrafenib, I haven't come across any information about any of the BRAF inhibitors crossing the BBB, though I admit I haven't been looking much lately. If that's true (I'll trust your specialist) it's good to know.

            Yes, the Ipi can take a very long time to "kick-in". It's one of the things that made me very uneasy about going with it vs starting a trial (I was hoping for one of the Ipi/PD1 combo trials). My concern was- ok, it can take a while to start working, but what if it doesn't work? Now I'm 4-6 months progressed and worse off- then what? I'm still a bit uneasy about it to tell the truth, but here I am on much the same treatment plan as you having been denied (as you were) the clinical trials due to brain mets. 

            I also had a check in appointment today (with my local oncologist, not my specialist) and aired some of the same "what if's", uneasiness, and fears that you probably have. I also got what sounds like a similar response- hang in there and stay positive. I have a lot of subcutaneous disease and since starting Ipi things seem to at least be stable for me (just hoping it hasn't changed gears and started internally). You mentioned in a previous post that you thought one of your subQ's was maybe startng to shrink. Hold on to that as a happy thought. 

            I suspect that both our doctors have a similar goal in mind- at the very least hold us stable long enought to get into a trial, at best kick this thing to the curb with the Ipi. I told my doctor today that I'd feel better if things were shrinking, not just staying stable and that I had concerns about the longevity of any response once I finish the Ipi (I had a very fast relapse after completing what appeared to be a successful course of IL2). He basically said we won't know until we know, but that at lest for now things appear stable and I should be happy about that. I am, really, but I do worry. 

            All we can do for now is cross our fingers and stay positive. It's true- if it works, we don't need a trial and PD1 will be there and FDA approved should we need it in the future. Hold on to that, enjoy the summer (if you're not dying of heat) and I wish you all the best!

            -Eva

            ecc26
            Participant

              Hi Denise,

              Interesting about the Debrafenib, I haven't come across any information about any of the BRAF inhibitors crossing the BBB, though I admit I haven't been looking much lately. If that's true (I'll trust your specialist) it's good to know.

              Yes, the Ipi can take a very long time to "kick-in". It's one of the things that made me very uneasy about going with it vs starting a trial (I was hoping for one of the Ipi/PD1 combo trials). My concern was- ok, it can take a while to start working, but what if it doesn't work? Now I'm 4-6 months progressed and worse off- then what? I'm still a bit uneasy about it to tell the truth, but here I am on much the same treatment plan as you having been denied (as you were) the clinical trials due to brain mets. 

              I also had a check in appointment today (with my local oncologist, not my specialist) and aired some of the same "what if's", uneasiness, and fears that you probably have. I also got what sounds like a similar response- hang in there and stay positive. I have a lot of subcutaneous disease and since starting Ipi things seem to at least be stable for me (just hoping it hasn't changed gears and started internally). You mentioned in a previous post that you thought one of your subQ's was maybe startng to shrink. Hold on to that as a happy thought. 

              I suspect that both our doctors have a similar goal in mind- at the very least hold us stable long enought to get into a trial, at best kick this thing to the curb with the Ipi. I told my doctor today that I'd feel better if things were shrinking, not just staying stable and that I had concerns about the longevity of any response once I finish the Ipi (I had a very fast relapse after completing what appeared to be a successful course of IL2). He basically said we won't know until we know, but that at lest for now things appear stable and I should be happy about that. I am, really, but I do worry. 

              All we can do for now is cross our fingers and stay positive. It's true- if it works, we don't need a trial and PD1 will be there and FDA approved should we need it in the future. Hold on to that, enjoy the summer (if you're not dying of heat) and I wish you all the best!

              -Eva

              DeniseK
              Participant

                Hi Eva,

                My mind has kicked into overdrive and I've been on the phone all morning.  My thinking is why not get the ball rolling on a clinical trial when my brain is stable NOW.  I'm afraid if I wait then I won't be eligible.  There is a trial coming up in SF that requires you have completed 2-4 rounds of Ipi, it's not posted yet because it's up and coming.  I figure If I get my pre screening done, which can take 4-6 weeks then I would just about have completed Ipi and enjoy a 4 week washout period and go!!  I'm not the kind of person to sit around and wait, I have to make things happen and it seems the doctors go with the flow, oh this isn't working so go with this, oh that didn't work so go with this, until it's done and there's nothing left to do.  

                So let me ask you this Eva, are you getting treatment for brain mets?  What have you done and are going to do? 

                You have to take charge of things and make things happen.  I wasn't going to get gamma knife until I called around and found someone.  They were going to wait until my brain mets grew large enough for the SRS machine which can only isolate a field over 5mm.  Ummmm, NO your not!!!  It was amazing how fast people called me back and my doctors sit back and shut up cuz they know they should have thought about it.  I read on another post that the doctors told her she couldn't get SRS more then twice, not correct!  I think some of us on here know more than our doctors do about what is right for us individually.  I've never been the one who like having someone tell them what to do and now with my life at stake I'm definately feeling rebelious.  smiley

                All my best to you Eva we can do this!!

                Denise

                Janet Lee
                Participant

                  Hello to both Denise and Eva,

                  I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                  And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                  Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                  My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                  Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                  Janet

                  Janet Lee
                  Participant

                    Hello to both Denise and Eva,

                    I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                    And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                    Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                    My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                    Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                    Janet

                    Janet Lee
                    Participant

                      Hello to both Denise and Eva,

                      I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                      And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                      Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                      My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                      Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                      Janet

                      Janet Lee
                      Participant

                        Hello to both Denise and Eva,

                        I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                        And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                        Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                        My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                        Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                        Janet

                        Janet Lee
                        Participant

                          Hello to both Denise and Eva,

                          I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                          And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                          Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                          My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                          Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                          Janet

                          Janet Lee
                          Participant

                            Hello to both Denise and Eva,

                            I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                            And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                            Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                            My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                            Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                            Janet

                            Janet Lee
                            Participant

                              Hello to both Denise and Eva,

                              I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                              And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                              Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                              My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                              Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                              Janet

                              Janet Lee
                              Participant

                                Hello to both Denise and Eva,

                                I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                                And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                                Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                                My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                                Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                                Janet

                                Janet Lee
                                Participant

                                  Hello to both Denise and Eva,

                                  I've been having trouble posting to the forum, but I've been following you two very closely. My husband, Don, is going through a very similar situation. He was only diagnosed in January, had Cyberknife to his first brain met, then it had to be surgically removed, and he had a lost of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two small lesions. But one month later, two knew lesions have showed up.

                                  And to make things even worse, we were patients of Dr. Ibrahim at Dana Farber, who very unexpectedly left DFCI. So we've been re-thinking where and with whom to centralize Don's treatments. We decided this week to move to Mass General to Dr. Keith Flaherty, who we've heard a lot of good things about.

                                  Initial recommendations were to do WBR, but I have all the same questions and concerns that you two have talked about here — timing, what if Ipi doesn't work, PD-1 trials, keeping the brain stable, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions. My general feeling is that SRS is preferable to WBR, when it can be done. So, that is what we are leaning toward right now.

                                  My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

                                  Wishing you both the best in the days to come. Staying positive and optimistic is so important. The nuances involved in fighting this disease are mind-boggling, aren't they? Learning from the people on this forum has been a life-saver in more ways than one!

                                  Janet

                                  randallgford
                                  Participant

                                    Hi Denise, I follow your prgoress although I dont post much and just want to wish you all the best; I love your aggressive approach. I too am always thinking ahead where my hubby (Randall, the patient) is more day to day. AFter diagnosis in Feb 2013,  he had done two ipi infusions and mel spread like wildfire, so he was switched to Zelboraf and his tumors have regressed 80% (lungs, liver, subq). He had WBR and good followup MRI – large one shrunk, one disappeared, remainder stable. But I worry about the Z suddenly not working although he is doing so well right now.  

                                    The oncologist also is happy with his progress. He admints ipi didnt have time to work, it can take six months,I talk to Randall (hubby) about PD1 trials but he doesnt want to stop the Z bcuz he's doing well. If he stopped it for a month and it hurt him, I couldnt live with myself. Also insurance issues, his insurance doesnt cover many places (georgraphically only Sylvester miami would be paid for). He is not working and I am struggling to support us and our daughter in college. I see some long-time Z successes and get hopeful, then see others that arent and panic again. 

                                    Anyway, best of luck to you, I love your spirit and will watch your progress and probably copy you, smiley Imitation is the sincerest firm of flattery. All the best, Vicki

                                    randallgford
                                    Participant

                                      Hi Denise, I follow your prgoress although I dont post much and just want to wish you all the best; I love your aggressive approach. I too am always thinking ahead where my hubby (Randall, the patient) is more day to day. AFter diagnosis in Feb 2013,  he had done two ipi infusions and mel spread like wildfire, so he was switched to Zelboraf and his tumors have regressed 80% (lungs, liver, subq). He had WBR and good followup MRI – large one shrunk, one disappeared, remainder stable. But I worry about the Z suddenly not working although he is doing so well right now.  

                                      The oncologist also is happy with his progress. He admints ipi didnt have time to work, it can take six months,I talk to Randall (hubby) about PD1 trials but he doesnt want to stop the Z bcuz he's doing well. If he stopped it for a month and it hurt him, I couldnt live with myself. Also insurance issues, his insurance doesnt cover many places (georgraphically only Sylvester miami would be paid for). He is not working and I am struggling to support us and our daughter in college. I see some long-time Z successes and get hopeful, then see others that arent and panic again. 

                                      Anyway, best of luck to you, I love your spirit and will watch your progress and probably copy you, smiley Imitation is the sincerest firm of flattery. All the best, Vicki

                                      randallgford
                                      Participant

                                        Hi Denise, I follow your prgoress although I dont post much and just want to wish you all the best; I love your aggressive approach. I too am always thinking ahead where my hubby (Randall, the patient) is more day to day. AFter diagnosis in Feb 2013,  he had done two ipi infusions and mel spread like wildfire, so he was switched to Zelboraf and his tumors have regressed 80% (lungs, liver, subq). He had WBR and good followup MRI – large one shrunk, one disappeared, remainder stable. But I worry about the Z suddenly not working although he is doing so well right now.  

                                        The oncologist also is happy with his progress. He admints ipi didnt have time to work, it can take six months,I talk to Randall (hubby) about PD1 trials but he doesnt want to stop the Z bcuz he's doing well. If he stopped it for a month and it hurt him, I couldnt live with myself. Also insurance issues, his insurance doesnt cover many places (georgraphically only Sylvester miami would be paid for). He is not working and I am struggling to support us and our daughter in college. I see some long-time Z successes and get hopeful, then see others that arent and panic again. 

                                        Anyway, best of luck to you, I love your spirit and will watch your progress and probably copy you, smiley Imitation is the sincerest firm of flattery. All the best, Vicki

                                        DeniseK
                                        Participant

                                          Hi Janet,

                                          I would ask the radiation oncologist in both places how small of a lesion they can isolate to.  I could have done all my brain mets at once if I would have had gamma knife first.  I agree with you about not doing WBR, I wish I wouldn't have done it.  But live and learn.  It would always be an option down the road should it become an issue.  My specialist said that Ipi can take 3-5 months to start working so maybe the Ipi will start kicking in.  It's scary waiting.    I've found a couple of trials that require you complete Ipi or have at least 2 rounds and are not responding, so this would be an option for you guys,  The pre screening can take 4-6 weeks so it's all about timing and staying stable,  I feel like this might be my only opportunity so I'm taking it.  I figure at the very latest I could be in a trial in 10-12 weeks.

                                          Keep in touch!!!!!

                                          Denise

                                          DeniseK
                                          Participant

                                            Hi Vicki,

                                            I responded really well to Z at first too but like you it was always in the back of my mind, what do I do if it stops?  It's always good to have a back up plan.  The anti pd 1 is on fast track to be approved by the FDA so maybe if the Z stops working for Randall it will be available without a trial.  My specialist thinks it will be either the last quarter of 2013 or first quarter of 2014.  So that's only 6-9 months away.  I'm also taking Reishi mushroom supplements.  I don't know if it's working or not but it protects the liver and the Japanese Government recognizes it as a cancer treatment.  

                                            The worst thing about the Z is I can't go in the sun.  I've been burned several times.  I'm healing and peeling right now on my face from going out 4 wheelin last weekend.  My cousin wants me to go to Hawaii but I don't want to go sit inside all day I'd want to go to the beach so we're holding off on that.  We are struggling right now financially too.  I'm going to look into fund raising ideas.  My fiance's work all gathered together and donated over $1,000 to us to help with costs of me traveling to San Fran.  

                                            Is your husband getting disability?  As stage IV Melanoma he could start getting it right away.  It took me 4 days!  Contact the Social Security office and/or go online.  This disease is considered terminal and after they get the confirmation from your doctor its immediate assistance.  Look into insurance though because Nevada doesn't offer medical coverage for 2 years.  I had to move to California to get medical help.  These are questions you need to ask before you apply.  Also I can't marry my fiance because I would lose my medical so we've been on hold for almost 3 years.  

                                            This disease has hampered my life but it's also given me strength.  It's tough being a caregiver, I know my fiance has dealt with a lot.  Take care and keep in touch. My email is Denise [email protected], same to you Eva you can email me too.  Heck anyone can email me!!  ๐Ÿ™‚  

                                            All my best 

                                            Denise

                                            POW
                                            Participant

                                              Hi, Denise-

                                              I like the idea of you taking Dabrafenib rather than Zelboraf. I think that they both cross the blood-brain barrier, but only Dabrafenib has proven that via clinical trials. And, besides, it's supposed to have fewer side effects. You might also ask your doctor about adding a MEK inhibitor– the combination of BRAF+MEK is more effective.

                                              It sounds like you and your specialist have a well-thought-out plan and you have good reason to be optimistic. Keep up the good work!

                                              POW
                                              Participant

                                                Hi, Denise-

                                                I like the idea of you taking Dabrafenib rather than Zelboraf. I think that they both cross the blood-brain barrier, but only Dabrafenib has proven that via clinical trials. And, besides, it's supposed to have fewer side effects. You might also ask your doctor about adding a MEK inhibitor– the combination of BRAF+MEK is more effective.

                                                It sounds like you and your specialist have a well-thought-out plan and you have good reason to be optimistic. Keep up the good work!

                                                POW
                                                Participant

                                                  Hi, Denise-

                                                  I like the idea of you taking Dabrafenib rather than Zelboraf. I think that they both cross the blood-brain barrier, but only Dabrafenib has proven that via clinical trials. And, besides, it's supposed to have fewer side effects. You might also ask your doctor about adding a MEK inhibitor– the combination of BRAF+MEK is more effective.

                                                  It sounds like you and your specialist have a well-thought-out plan and you have good reason to be optimistic. Keep up the good work!

                                                  DeniseK
                                                  Participant

                                                    Hi Pat,

                                                    I did talk to my doctor about adding MEK, unfortunately he's having a lot of trouble getting insurance companies to approve both drugs at the same time.  Especially my insurance.  I'm lucky I'm getting the treatment I am so it's not a big deal.  

                                                    aldakota22
                                                    Participant

                                                      Seems you are always ready with a new attack plan.Praying praying that this new startergy kicks melanomas butt once and for all .As for switching  to debrafenib it has been proven to work in more people than "Z" with less side affects. Beat the Beast … Al

                                                      aldakota22
                                                      Participant

                                                        Seems you are always ready with a new attack plan.Praying praying that this new startergy kicks melanomas butt once and for all .As for switching  to debrafenib it has been proven to work in more people than "Z" with less side affects. Beat the Beast … Al

                                                        aldakota22
                                                        Participant

                                                          Seems you are always ready with a new attack plan.Praying praying that this new startergy kicks melanomas butt once and for all .As for switching  to debrafenib it has been proven to work in more people than "Z" with less side affects. Beat the Beast … Al

                                                          DeniseK
                                                          Participant

                                                            Hi Eva,

                                                            My mind has kicked into overdrive and I've been on the phone all morning.  My thinking is why not get the ball rolling on a clinical trial when my brain is stable NOW.  I'm afraid if I wait then I won't be eligible.  There is a trial coming up in SF that requires you have completed 2-4 rounds of Ipi, it's not posted yet because it's up and coming.  I figure If I get my pre screening done, which can take 4-6 weeks then I would just about have completed Ipi and enjoy a 4 week washout period and go!!  I'm not the kind of person to sit around and wait, I have to make things happen and it seems the doctors go with the flow, oh this isn't working so go with this, oh that didn't work so go with this, until it's done and there's nothing left to do.  

                                                            So let me ask you this Eva, are you getting treatment for brain mets?  What have you done and are going to do? 

                                                            You have to take charge of things and make things happen.  I wasn't going to get gamma knife until I called around and found someone.  They were going to wait until my brain mets grew large enough for the SRS machine which can only isolate a field over 5mm.  Ummmm, NO your not!!!  It was amazing how fast people called me back and my doctors sit back and shut up cuz they know they should have thought about it.  I read on another post that the doctors told her she couldn't get SRS more then twice, not correct!  I think some of us on here know more than our doctors do about what is right for us individually.  I've never been the one who like having someone tell them what to do and now with my life at stake I'm definately feeling rebelious.  smiley

                                                            All my best to you Eva we can do this!!

                                                            Denise

                                                            DeniseK
                                                            Participant

                                                              Hi Eva,

                                                              My mind has kicked into overdrive and I've been on the phone all morning.  My thinking is why not get the ball rolling on a clinical trial when my brain is stable NOW.  I'm afraid if I wait then I won't be eligible.  There is a trial coming up in SF that requires you have completed 2-4 rounds of Ipi, it's not posted yet because it's up and coming.  I figure If I get my pre screening done, which can take 4-6 weeks then I would just about have completed Ipi and enjoy a 4 week washout period and go!!  I'm not the kind of person to sit around and wait, I have to make things happen and it seems the doctors go with the flow, oh this isn't working so go with this, oh that didn't work so go with this, until it's done and there's nothing left to do.  

                                                              So let me ask you this Eva, are you getting treatment for brain mets?  What have you done and are going to do? 

                                                              You have to take charge of things and make things happen.  I wasn't going to get gamma knife until I called around and found someone.  They were going to wait until my brain mets grew large enough for the SRS machine which can only isolate a field over 5mm.  Ummmm, NO your not!!!  It was amazing how fast people called me back and my doctors sit back and shut up cuz they know they should have thought about it.  I read on another post that the doctors told her she couldn't get SRS more then twice, not correct!  I think some of us on here know more than our doctors do about what is right for us individually.  I've never been the one who like having someone tell them what to do and now with my life at stake I'm definately feeling rebelious.  smiley

                                                              All my best to you Eva we can do this!!

                                                              Denise

                                                              DeniseK
                                                              Participant

                                                                Hi Janet,

                                                                I would ask the radiation oncologist in both places how small of a lesion they can isolate to.  I could have done all my brain mets at once if I would have had gamma knife first.  I agree with you about not doing WBR, I wish I wouldn't have done it.  But live and learn.  It would always be an option down the road should it become an issue.  My specialist said that Ipi can take 3-5 months to start working so maybe the Ipi will start kicking in.  It's scary waiting.    I've found a couple of trials that require you complete Ipi or have at least 2 rounds and are not responding, so this would be an option for you guys,  The pre screening can take 4-6 weeks so it's all about timing and staying stable,  I feel like this might be my only opportunity so I'm taking it.  I figure at the very latest I could be in a trial in 10-12 weeks.

                                                                Keep in touch!!!!!

                                                                Denise

                                                                DeniseK
                                                                Participant

                                                                  Hi Janet,

                                                                  I would ask the radiation oncologist in both places how small of a lesion they can isolate to.  I could have done all my brain mets at once if I would have had gamma knife first.  I agree with you about not doing WBR, I wish I wouldn't have done it.  But live and learn.  It would always be an option down the road should it become an issue.  My specialist said that Ipi can take 3-5 months to start working so maybe the Ipi will start kicking in.  It's scary waiting.    I've found a couple of trials that require you complete Ipi or have at least 2 rounds and are not responding, so this would be an option for you guys,  The pre screening can take 4-6 weeks so it's all about timing and staying stable,  I feel like this might be my only opportunity so I'm taking it.  I figure at the very latest I could be in a trial in 10-12 weeks.

                                                                  Keep in touch!!!!!

                                                                  Denise

                                                                  DeniseK
                                                                  Participant

                                                                    Hi Vicki,

                                                                    I responded really well to Z at first too but like you it was always in the back of my mind, what do I do if it stops?  It's always good to have a back up plan.  The anti pd 1 is on fast track to be approved by the FDA so maybe if the Z stops working for Randall it will be available without a trial.  My specialist thinks it will be either the last quarter of 2013 or first quarter of 2014.  So that's only 6-9 months away.  I'm also taking Reishi mushroom supplements.  I don't know if it's working or not but it protects the liver and the Japanese Government recognizes it as a cancer treatment.  

                                                                    The worst thing about the Z is I can't go in the sun.  I've been burned several times.  I'm healing and peeling right now on my face from going out 4 wheelin last weekend.  My cousin wants me to go to Hawaii but I don't want to go sit inside all day I'd want to go to the beach so we're holding off on that.  We are struggling right now financially too.  I'm going to look into fund raising ideas.  My fiance's work all gathered together and donated over $1,000 to us to help with costs of me traveling to San Fran.  

                                                                    Is your husband getting disability?  As stage IV Melanoma he could start getting it right away.  It took me 4 days!  Contact the Social Security office and/or go online.  This disease is considered terminal and after they get the confirmation from your doctor its immediate assistance.  Look into insurance though because Nevada doesn't offer medical coverage for 2 years.  I had to move to California to get medical help.  These are questions you need to ask before you apply.  Also I can't marry my fiance because I would lose my medical so we've been on hold for almost 3 years.  

                                                                    This disease has hampered my life but it's also given me strength.  It's tough being a caregiver, I know my fiance has dealt with a lot.  Take care and keep in touch. My email is Denise [email protected], same to you Eva you can email me too.  Heck anyone can email me!!  ๐Ÿ™‚  

                                                                    All my best 

                                                                    Denise

                                                                    DeniseK
                                                                    Participant

                                                                      Hi Vicki,

                                                                      I responded really well to Z at first too but like you it was always in the back of my mind, what do I do if it stops?  It's always good to have a back up plan.  The anti pd 1 is on fast track to be approved by the FDA so maybe if the Z stops working for Randall it will be available without a trial.  My specialist thinks it will be either the last quarter of 2013 or first quarter of 2014.  So that's only 6-9 months away.  I'm also taking Reishi mushroom supplements.  I don't know if it's working or not but it protects the liver and the Japanese Government recognizes it as a cancer treatment.  

                                                                      The worst thing about the Z is I can't go in the sun.  I've been burned several times.  I'm healing and peeling right now on my face from going out 4 wheelin last weekend.  My cousin wants me to go to Hawaii but I don't want to go sit inside all day I'd want to go to the beach so we're holding off on that.  We are struggling right now financially too.  I'm going to look into fund raising ideas.  My fiance's work all gathered together and donated over $1,000 to us to help with costs of me traveling to San Fran.  

                                                                      Is your husband getting disability?  As stage IV Melanoma he could start getting it right away.  It took me 4 days!  Contact the Social Security office and/or go online.  This disease is considered terminal and after they get the confirmation from your doctor its immediate assistance.  Look into insurance though because Nevada doesn't offer medical coverage for 2 years.  I had to move to California to get medical help.  These are questions you need to ask before you apply.  Also I can't marry my fiance because I would lose my medical so we've been on hold for almost 3 years.  

                                                                      This disease has hampered my life but it's also given me strength.  It's tough being a caregiver, I know my fiance has dealt with a lot.  Take care and keep in touch. My email is Denise [email protected], same to you Eva you can email me too.  Heck anyone can email me!!  ๐Ÿ™‚  

                                                                      All my best 

                                                                      Denise

                                                                      DeniseK
                                                                      Participant

                                                                        Hi Pat,

                                                                        I did talk to my doctor about adding MEK, unfortunately he's having a lot of trouble getting insurance companies to approve both drugs at the same time.  Especially my insurance.  I'm lucky I'm getting the treatment I am so it's not a big deal.  

                                                                        DeniseK
                                                                        Participant

                                                                          Hi Pat,

                                                                          I did talk to my doctor about adding MEK, unfortunately he's having a lot of trouble getting insurance companies to approve both drugs at the same time.  Especially my insurance.  I'm lucky I'm getting the treatment I am so it's not a big deal.  

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