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Moving onto plan “C”. Off Zelboraf and onto Tafinlar.

Forums General Melanoma Community Moving onto plan “C”. Off Zelboraf and onto Tafinlar.

  • Post
    aldakota22
    Participant

      Well my 23 month run with "Z" is over as of 8/13/13. With the issue of brain mets developing "Z" is no longer the magic bullet.Now after a 2 week dry period  i am on "T"  (Tafinlar).This Tuesday scheduled for gamma knife surgery for brain mets.Keeping my PMA high that this new plan will be more effective than plan B. Little anxious of the procedure but have read posts from those who have SRS.A little scary but very doable.Need your prayers/Beat the Beast.      Al

      Well my 23 month run with "Z" is over as of 8/13/13. With the issue of brain mets developing "Z" is no longer the magic bullet.Now after a 2 week dry period  i am on "T"  (Tafinlar).This Tuesday scheduled for gamma knife surgery for brain mets.Keeping my PMA high that this new plan will be more effective than plan B. Little anxious of the procedure but have read posts from those who have SRS.A little scary but very doable.Need your prayers/Beat the Beast.      Al

    Viewing 30 reply threads
    • Replies
        awillett1991
        Participant
          Al – it’s always good to have a plan B! I had grand success with SRS for 2 mets in Nov. don’t be shy about asking for Ativan or something to get you through the mask fitting and the procedure. It’s unnerving (was to me, anyway) That’s what these drugs are made for. You will beat the beast!!

          Amy

          awillett1991
          Participant
            Al – it’s always good to have a plan B! I had grand success with SRS for 2 mets in Nov. don’t be shy about asking for Ativan or something to get you through the mask fitting and the procedure. It’s unnerving (was to me, anyway) That’s what these drugs are made for. You will beat the beast!!

            Amy

            awillett1991
            Participant
              Al – it’s always good to have a plan B! I had grand success with SRS for 2 mets in Nov. don’t be shy about asking for Ativan or something to get you through the mask fitting and the procedure. It’s unnerving (was to me, anyway) That’s what these drugs are made for. You will beat the beast!!

              Amy

              Mat
              Participant

                Al, two things:

                1.  Consider requesting the Tafinlar-Mekinist combo.  Better stats and also supposed to help with side effects.  I've been on the combo for a month with very few side effects, all of which are manageable.

                2.  I had a g-knife procedure for a small brain met.  They gave me a local anesthetic so I was actually asleep when they put on the head frame.  I woke up in the MRI when they were mapping (but I was very mellow at that point).  I agree with the prior post that meds are a good idea.  Otherwise, "no sweat".  Easier than a normal head MRI in my view!  I was groggy the day of the procedure and the following day with only a minor headache the day of.  I had the procedure on a Friday and was back to work on Monday.

                Good luck!

                Mat
                Participant

                  Al, two things:

                  1.  Consider requesting the Tafinlar-Mekinist combo.  Better stats and also supposed to help with side effects.  I've been on the combo for a month with very few side effects, all of which are manageable.

                  2.  I had a g-knife procedure for a small brain met.  They gave me a local anesthetic so I was actually asleep when they put on the head frame.  I woke up in the MRI when they were mapping (but I was very mellow at that point).  I agree with the prior post that meds are a good idea.  Otherwise, "no sweat".  Easier than a normal head MRI in my view!  I was groggy the day of the procedure and the following day with only a minor headache the day of.  I had the procedure on a Friday and was back to work on Monday.

                  Good luck!

                  Mat
                  Participant

                    Al, two things:

                    1.  Consider requesting the Tafinlar-Mekinist combo.  Better stats and also supposed to help with side effects.  I've been on the combo for a month with very few side effects, all of which are manageable.

                    2.  I had a g-knife procedure for a small brain met.  They gave me a local anesthetic so I was actually asleep when they put on the head frame.  I woke up in the MRI when they were mapping (but I was very mellow at that point).  I agree with the prior post that meds are a good idea.  Otherwise, "no sweat".  Easier than a normal head MRI in my view!  I was groggy the day of the procedure and the following day with only a minor headache the day of.  I had the procedure on a Friday and was back to work on Monday.

                    Good luck!

                    rosa1
                    Participant

                      Al – I truly wish you the best.  Be brave, I know you can do it.  I will pray for you, keep us informed!  Keep your PMA high and as you always say" Beat the Beast"!smiley     

                       

                      Rosa 

                      rosa1
                      Participant

                        Al – I truly wish you the best.  Be brave, I know you can do it.  I will pray for you, keep us informed!  Keep your PMA high and as you always say" Beat the Beast"!smiley     

                         

                        Rosa 

                        rosa1
                        Participant

                          Al – I truly wish you the best.  Be brave, I know you can do it.  I will pray for you, keep us informed!  Keep your PMA high and as you always say" Beat the Beast"!smiley     

                           

                          Rosa 

                          NYKaren
                          Participant
                            Hi Al,
                            You will do great, I know you will.
                            Do you know yet which hospital you will be at? Is it with Dr Kondziolka(sp?). He’s really such a nice man, but more importantly a highly skilled doctor.
                            As you know, I have been on the Trafilnar, and it has been like night and day. Just a tiny bit of achy knees, no sun sensitivity at all!
                            Please message me if you want…I’d love to speak with you.
                            You will absolutely beat the beast.
                            Ali
                            Participant

                              Prayers for you now.  You got this!

                              Ali
                              Participant

                                Prayers for you now.  You got this!

                                Ali
                                Participant

                                  Prayers for you now.  You got this!

                                  WayneG
                                  Participant

                                    Praying for you Al!  Been on "Z" for 17 months (still on it) and had gamma knife at the end of June for a couple of mets, had follow up brain MRI early August – no new mets and the 2 they zapped were shrinking slightly.  Nothing has been said yet about stopping Z but have another mri early October along with PET/CT.

                                    Once they get the frame on you for the gamma knife you are good to go, rest of it's a piece of cake!  Yes something to relax you a little bit is a good thing…  my guy offerred it but wanted to try to put it on without it first so my head wouldn't move as much.  He got in on in less than 10 minutes.. not a problem.  The "screws" that hold the frame on hurt for just a minute – it's actually the pressure that hurts – but then it stops and just doesn't hurt… very weird.

                                    One tip is afterward sleep, lay propped up for a couple of days – check with the doc to confirm.  I missed that instruction from my doc and laid flat out to sleep.  Made my face/eyes swell way, way, way up!

                                    You can beat the beast!

                                    WayneG
                                    Participant

                                      Praying for you Al!  Been on "Z" for 17 months (still on it) and had gamma knife at the end of June for a couple of mets, had follow up brain MRI early August – no new mets and the 2 they zapped were shrinking slightly.  Nothing has been said yet about stopping Z but have another mri early October along with PET/CT.

                                      Once they get the frame on you for the gamma knife you are good to go, rest of it's a piece of cake!  Yes something to relax you a little bit is a good thing…  my guy offerred it but wanted to try to put it on without it first so my head wouldn't move as much.  He got in on in less than 10 minutes.. not a problem.  The "screws" that hold the frame on hurt for just a minute – it's actually the pressure that hurts – but then it stops and just doesn't hurt… very weird.

                                      One tip is afterward sleep, lay propped up for a couple of days – check with the doc to confirm.  I missed that instruction from my doc and laid flat out to sleep.  Made my face/eyes swell way, way, way up!

                                      You can beat the beast!

                                      WayneG
                                      Participant

                                        Praying for you Al!  Been on "Z" for 17 months (still on it) and had gamma knife at the end of June for a couple of mets, had follow up brain MRI early August – no new mets and the 2 they zapped were shrinking slightly.  Nothing has been said yet about stopping Z but have another mri early October along with PET/CT.

                                        Once they get the frame on you for the gamma knife you are good to go, rest of it's a piece of cake!  Yes something to relax you a little bit is a good thing…  my guy offerred it but wanted to try to put it on without it first so my head wouldn't move as much.  He got in on in less than 10 minutes.. not a problem.  The "screws" that hold the frame on hurt for just a minute – it's actually the pressure that hurts – but then it stops and just doesn't hurt… very weird.

                                        One tip is afterward sleep, lay propped up for a couple of days – check with the doc to confirm.  I missed that instruction from my doc and laid flat out to sleep.  Made my face/eyes swell way, way, way up!

                                        You can beat the beast!

                                        DeniseK
                                        Participant

                                          Hi Al,

                                          First of all I"m sorry to hear about your "run" coming to end with Z.  I've been on T for a couple weeks now and the side effedts are less with it so that will be your up side.  

                                          Secondly I have heard that T does break the brain barrier so that's another postitive.  

                                          Thirdly I am confused, you say Gamma Knife then you say SRS.  I have had both and they are different procedures.  If you are getting SRS they fit you with a mesh mask over your face and the back of your head gets molded to a styrofoam thingy.  It's a little claustrophobic so an ativan ahead of time is nice and recommended.  Gamma knife your fitted to a frame which is bolted to your head through the skin to your skull.  You will get local injections to prevent the bolting procedure from actually hurting but you can feel the pressure.  I also recommend ativan for this procedure.  The worst part of it is when they take it off I had a horrible headache so come prepared with something for pain, I wish I knew this.  Overall I would say SRS is an easier process but gamma knife wasn't that bad.  

                                          All my best to you Al, you can definately beat the beast!!  Keep up the PMA!!

                                          Denise

                                          DeniseK
                                          Participant

                                            Hi Al,

                                            First of all I"m sorry to hear about your "run" coming to end with Z.  I've been on T for a couple weeks now and the side effedts are less with it so that will be your up side.  

                                            Secondly I have heard that T does break the brain barrier so that's another postitive.  

                                            Thirdly I am confused, you say Gamma Knife then you say SRS.  I have had both and they are different procedures.  If you are getting SRS they fit you with a mesh mask over your face and the back of your head gets molded to a styrofoam thingy.  It's a little claustrophobic so an ativan ahead of time is nice and recommended.  Gamma knife your fitted to a frame which is bolted to your head through the skin to your skull.  You will get local injections to prevent the bolting procedure from actually hurting but you can feel the pressure.  I also recommend ativan for this procedure.  The worst part of it is when they take it off I had a horrible headache so come prepared with something for pain, I wish I knew this.  Overall I would say SRS is an easier process but gamma knife wasn't that bad.  

                                            All my best to you Al, you can definately beat the beast!!  Keep up the PMA!!

                                            Denise

                                            DeniseK
                                            Participant

                                              Hi Al,

                                              First of all I"m sorry to hear about your "run" coming to end with Z.  I've been on T for a couple weeks now and the side effedts are less with it so that will be your up side.  

                                              Secondly I have heard that T does break the brain barrier so that's another postitive.  

                                              Thirdly I am confused, you say Gamma Knife then you say SRS.  I have had both and they are different procedures.  If you are getting SRS they fit you with a mesh mask over your face and the back of your head gets molded to a styrofoam thingy.  It's a little claustrophobic so an ativan ahead of time is nice and recommended.  Gamma knife your fitted to a frame which is bolted to your head through the skin to your skull.  You will get local injections to prevent the bolting procedure from actually hurting but you can feel the pressure.  I also recommend ativan for this procedure.  The worst part of it is when they take it off I had a horrible headache so come prepared with something for pain, I wish I knew this.  Overall I would say SRS is an easier process but gamma knife wasn't that bad.  

                                              All my best to you Al, you can definately beat the beast!!  Keep up the PMA!!

                                              Denise

                                              Tina D
                                              Participant

                                                Al,

                                                I am sorry to hear this news, but so glad there is a good plan. Praying for you as you move on to plan C

                                                Tina

                                                Tina D
                                                Participant

                                                  Al,

                                                  I am sorry to hear this news, but so glad there is a good plan. Praying for you as you move on to plan C

                                                  Tina

                                                  Tina D
                                                  Participant

                                                    Al,

                                                    I am sorry to hear this news, but so glad there is a good plan. Praying for you as you move on to plan C

                                                    Tina

                                                    aldakota22
                                                    Participant

                                                      Really want to thank everyone for their support and prayers for Plan C. It is really uplifing to have others offer their own stories as a road map of what to expect. With God and good doctors  in the fight I will Beat the Beast.Thanks           Al

                                                      aldakota22
                                                      Participant

                                                        Really want to thank everyone for their support and prayers for Plan C. It is really uplifing to have others offer their own stories as a road map of what to expect. With God and good doctors  in the fight I will Beat the Beast.Thanks           Al

                                                        aldakota22
                                                        Participant

                                                          Really want to thank everyone for their support and prayers for Plan C. It is really uplifing to have others offer their own stories as a road map of what to expect. With God and good doctors  in the fight I will Beat the Beast.Thanks           Al

                                                          Richard_K
                                                          Participant

                                                            Al,

                                                            So sorry to here about Zelboraf, I was getting used to you nipping at my heels.  That being said, good to read about your current plans and I hope it too gives you a long run.  On a separate subject, there is a Miles for Melanoma run/walk in New Jersey on September 22nd and NYU has a team.  If you are up to it and can attend, give me a shout so we can meet.

                                                            Richard_K
                                                            Participant

                                                              Al,

                                                              So sorry to here about Zelboraf, I was getting used to you nipping at my heels.  That being said, good to read about your current plans and I hope it too gives you a long run.  On a separate subject, there is a Miles for Melanoma run/walk in New Jersey on September 22nd and NYU has a team.  If you are up to it and can attend, give me a shout so we can meet.

                                                              Richard_K
                                                              Participant

                                                                Al,

                                                                So sorry to here about Zelboraf, I was getting used to you nipping at my heels.  That being said, good to read about your current plans and I hope it too gives you a long run.  On a separate subject, there is a Miles for Melanoma run/walk in New Jersey on September 22nd and NYU has a team.  If you are up to it and can attend, give me a shout so we can meet.

                                                                kellygrl
                                                                Participant
                                                                  Hey Al!!! Been thinking of you! I am sure you have more recent post then this and hope it is good news! I will search for it…. in the meantime, not sure if you know Z ran its course with my husband back in Aug/Sept, he also had gamma in Aug on 5 tumors and hey have responded! He then did 2 ipi infusions in Sept/Oct, hut tumors too aggressive, so went to dabradenib/mek inhibitor in Nov. This seems to be working, but one tumor did grow and he just had another gamma last week on 4 tumors. So, now….. hopefully this works and combo still works, then go from there. Went to see melanoma specialist at Mayo back in Nov, he recommended getting mets under control and then adding ipi to combo…. his words “load him with ammo, he is high risk and combo will shrink quicker, but ipi will give him the miles” So, we’ll have to see what next few mos bring. 3/24/14 will be 2 yrs, a miracle!! Hope you are doing GREAT!!! PMA has been a little rough this winter, but managing.

                                                                  Kelly ๐Ÿ™‚

                                                                  kellygrl
                                                                  Participant
                                                                    Hey Al!!! Been thinking of you! I am sure you have more recent post then this and hope it is good news! I will search for it…. in the meantime, not sure if you know Z ran its course with my husband back in Aug/Sept, he also had gamma in Aug on 5 tumors and hey have responded! He then did 2 ipi infusions in Sept/Oct, hut tumors too aggressive, so went to dabradenib/mek inhibitor in Nov. This seems to be working, but one tumor did grow and he just had another gamma last week on 4 tumors. So, now….. hopefully this works and combo still works, then go from there. Went to see melanoma specialist at Mayo back in Nov, he recommended getting mets under control and then adding ipi to combo…. his words “load him with ammo, he is high risk and combo will shrink quicker, but ipi will give him the miles” So, we’ll have to see what next few mos bring. 3/24/14 will be 2 yrs, a miracle!! Hope you are doing GREAT!!! PMA has been a little rough this winter, but managing.

                                                                    Kelly ๐Ÿ™‚

                                                                    kellygrl
                                                                    Participant
                                                                      Hey Al!!! Been thinking of you! I am sure you have more recent post then this and hope it is good news! I will search for it…. in the meantime, not sure if you know Z ran its course with my husband back in Aug/Sept, he also had gamma in Aug on 5 tumors and hey have responded! He then did 2 ipi infusions in Sept/Oct, hut tumors too aggressive, so went to dabradenib/mek inhibitor in Nov. This seems to be working, but one tumor did grow and he just had another gamma last week on 4 tumors. So, now….. hopefully this works and combo still works, then go from there. Went to see melanoma specialist at Mayo back in Nov, he recommended getting mets under control and then adding ipi to combo…. his words “load him with ammo, he is high risk and combo will shrink quicker, but ipi will give him the miles” So, we’ll have to see what next few mos bring. 3/24/14 will be 2 yrs, a miracle!! Hope you are doing GREAT!!! PMA has been a little rough this winter, but managing.

                                                                      Kelly ๐Ÿ™‚

                                                                      NYKaren
                                                                      Participant
                                                                        Hi Al,
                                                                        You will do great, I know you will.
                                                                        Do you know yet which hospital you will be at? Is it with Dr Kondziolka(sp?). He’s really such a nice man, but more importantly a highly skilled doctor.
                                                                        As you know, I have been on the Trafilnar, and it has been like night and day. Just a tiny bit of achy knees, no sun sensitivity at all!
                                                                        Please message me if you want…I’d love to speak with you.
                                                                        You will absolutely beat the beast.
                                                                        NYKaren
                                                                        Participant
                                                                          Hi Al,
                                                                          You will do great, I know you will.
                                                                          Do you know yet which hospital you will be at? Is it with Dr Kondziolka(sp?). He’s really such a nice man, but more importantly a highly skilled doctor.
                                                                          As you know, I have been on the Trafilnar, and it has been like night and day. Just a tiny bit of achy knees, no sun sensitivity at all!
                                                                          Please message me if you want…I’d love to speak with you.
                                                                          You will absolutely beat the beast.
                                                                          aldakota22
                                                                          Participant

                                                                            Karen great to hear that "T" is kicking melanomas butt. Really happy for you. I am having the procedure done in Northern Westchester in MT.Kisco by Dr. Erik Parker and Joshua Silverman. I think we are both under thecare of melanoma specialist. Dr. Anna Pavlick @ NYU Langome  in NYC. Normally the procedure would be done there but since Sandy it is done at  offsite locations. Love to contact you but do not know how? Keeping our PMA we will Beat the Beast.  All the best   to you.    Al

                                                                            aldakota22
                                                                            Participant

                                                                              Karen great to hear that "T" is kicking melanomas butt. Really happy for you. I am having the procedure done in Northern Westchester in MT.Kisco by Dr. Erik Parker and Joshua Silverman. I think we are both under thecare of melanoma specialist. Dr. Anna Pavlick @ NYU Langome  in NYC. Normally the procedure would be done there but since Sandy it is done at  offsite locations. Love to contact you but do not know how? Keeping our PMA we will Beat the Beast.  All the best   to you.    Al

                                                                              aldakota22
                                                                              Participant

                                                                                Karen great to hear that "T" is kicking melanomas butt. Really happy for you. I am having the procedure done in Northern Westchester in MT.Kisco by Dr. Erik Parker and Joshua Silverman. I think we are both under thecare of melanoma specialist. Dr. Anna Pavlick @ NYU Langome  in NYC. Normally the procedure would be done there but since Sandy it is done at  offsite locations. Love to contact you but do not know how? Keeping our PMA we will Beat the Beast.  All the best   to you.    Al

                                                                                NYKaren
                                                                                Participant
                                                                                  Hi Al,
                                                                                  I didn’t see your reply to this until now, so I’m hoping you will see this.
                                                                                  Knowing that Sandy washed away NYU’s Gamma Knife machines, I was wondering which hospital you would be using for your upcoming procedure.
                                                                                  My email is [email protected].
                                                                                  All the best,
                                                                                  Karen
                                                                                  NYKaren
                                                                                  Participant
                                                                                    Hi Al,
                                                                                    I didn’t see your reply to this until now, so I’m hoping you will see this.
                                                                                    Knowing that Sandy washed away NYU’s Gamma Knife machines, I was wondering which hospital you would be using for your upcoming procedure.
                                                                                    My email is [email protected].
                                                                                    All the best,
                                                                                    Karen
                                                                                    NYKaren
                                                                                    Participant
                                                                                      Hi Al,
                                                                                      I didn’t see your reply to this until now, so I’m hoping you will see this.
                                                                                      Knowing that Sandy washed away NYU’s Gamma Knife machines, I was wondering which hospital you would be using for your upcoming procedure.
                                                                                      My email is [email protected].
                                                                                      All the best,
                                                                                      Karen
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