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Wayne & Nancy Gilbert (AKA Snickers60)

Forums General Melanoma Community Wayne & Nancy Gilbert (AKA Snickers60)

  • Post
    killmel
    Participant

       

      I have not seen a post for a long time from you. I hope you are doing well.

      Does anyone know how Wayne is doing?

       

    Viewing 5 reply threads
    • Replies
        WayneG
        Participant

          Thanks for asking!  This is such a great group of fighters and Nancy and I have learned so much here!

          This is Wayne and it's been a roller coaster few months.  Started "Z" 18 months ago having been diagnosed as Stage IV and have had fantastic results.  It "evaporated" multiple tumors everywhere – lungs, chest, spine, etc.  Nothing showed up in the brain MRI last Jan either.

          Regular trip to MDA early last June – PET still looked fantastic – but the brain MRI showed 2 mets.  2 weeks later gamma knife.  Not too bad.  Follow up brain MRI scan early August showed no new mets and the 2 treated ones stable or slightly smaller.

          Last week, another PET scan – still fantastic.  Brain MRI, 2 stable mets, but 2 new "things" plus a slight hemmorage.  The scare was the met was acutally in a position that was putting cancer cells into the spinal fluid.  For those of you who have been there, not a pleasant thought for treatment options – one being 3 weeks in the hospital to let chemo drain into the fluid via a port in your head – but if that can work, then that's what we do.

          Last Friday had spine MRI and Monday had lumbar puncture.  Spinal fluid clear praise the Lord and something that may or may not be something on the spine.  

          Medical Oncologist switched me to dabrafenib and Temodar to get something into the brain area.  Started those last night.  Will have to see what side effects might have.  "Z" kicked me for about 4 months early on but then adjusted so may or may not be with the new regimine.  Know a lot of you are on that journey too.

          Follow up brain MRI end of October and another spine MRI late November.

          So that's it… very, very blessed and have had great results with Zelboraf, expect the same with dabrafenib and Temodar – we'll know for sure in 4 weeks!

          Don't stop believin' as Steve Perry says!!  

          Wayne

            JerryfromFauq
            Participant

              Nice to have options, even if not always easy.  Give Nancy a Hug for me!

              JerryfromFauq
              Participant

                Nice to have options, even if not always easy.  Give Nancy a Hug for me!

                JerryfromFauq
                Participant

                  Nice to have options, even if not always easy.  Give Nancy a Hug for me!

                WayneG
                Participant

                  Thanks for asking!  This is such a great group of fighters and Nancy and I have learned so much here!

                  This is Wayne and it's been a roller coaster few months.  Started "Z" 18 months ago having been diagnosed as Stage IV and have had fantastic results.  It "evaporated" multiple tumors everywhere – lungs, chest, spine, etc.  Nothing showed up in the brain MRI last Jan either.

                  Regular trip to MDA early last June – PET still looked fantastic – but the brain MRI showed 2 mets.  2 weeks later gamma knife.  Not too bad.  Follow up brain MRI scan early August showed no new mets and the 2 treated ones stable or slightly smaller.

                  Last week, another PET scan – still fantastic.  Brain MRI, 2 stable mets, but 2 new "things" plus a slight hemmorage.  The scare was the met was acutally in a position that was putting cancer cells into the spinal fluid.  For those of you who have been there, not a pleasant thought for treatment options – one being 3 weeks in the hospital to let chemo drain into the fluid via a port in your head – but if that can work, then that's what we do.

                  Last Friday had spine MRI and Monday had lumbar puncture.  Spinal fluid clear praise the Lord and something that may or may not be something on the spine.  

                  Medical Oncologist switched me to dabrafenib and Temodar to get something into the brain area.  Started those last night.  Will have to see what side effects might have.  "Z" kicked me for about 4 months early on but then adjusted so may or may not be with the new regimine.  Know a lot of you are on that journey too.

                  Follow up brain MRI end of October and another spine MRI late November.

                  So that's it… very, very blessed and have had great results with Zelboraf, expect the same with dabrafenib and Temodar – we'll know for sure in 4 weeks!

                  Don't stop believin' as Steve Perry says!!  

                  Wayne

                  WayneG
                  Participant

                    Thanks for asking!  This is such a great group of fighters and Nancy and I have learned so much here!

                    This is Wayne and it's been a roller coaster few months.  Started "Z" 18 months ago having been diagnosed as Stage IV and have had fantastic results.  It "evaporated" multiple tumors everywhere – lungs, chest, spine, etc.  Nothing showed up in the brain MRI last Jan either.

                    Regular trip to MDA early last June – PET still looked fantastic – but the brain MRI showed 2 mets.  2 weeks later gamma knife.  Not too bad.  Follow up brain MRI scan early August showed no new mets and the 2 treated ones stable or slightly smaller.

                    Last week, another PET scan – still fantastic.  Brain MRI, 2 stable mets, but 2 new "things" plus a slight hemmorage.  The scare was the met was acutally in a position that was putting cancer cells into the spinal fluid.  For those of you who have been there, not a pleasant thought for treatment options – one being 3 weeks in the hospital to let chemo drain into the fluid via a port in your head – but if that can work, then that's what we do.

                    Last Friday had spine MRI and Monday had lumbar puncture.  Spinal fluid clear praise the Lord and something that may or may not be something on the spine.  

                    Medical Oncologist switched me to dabrafenib and Temodar to get something into the brain area.  Started those last night.  Will have to see what side effects might have.  "Z" kicked me for about 4 months early on but then adjusted so may or may not be with the new regimine.  Know a lot of you are on that journey too.

                    Follow up brain MRI end of October and another spine MRI late November.

                    So that's it… very, very blessed and have had great results with Zelboraf, expect the same with dabrafenib and Temodar – we'll know for sure in 4 weeks!

                    Don't stop believin' as Steve Perry says!!  

                    Wayne

                    aldakota22
                    Participant

                      See that you are on darbrafenib.Like you I was a responder long time to "Z" 23 months.Taken off and now on "D" as I now ahve brain mets.Had gamma knife done on 9/3/13.Just had visit with neurosurgeon for MRI and results this past Monday.A little to early to be conclusive but doc says none of the largest mets got bigger or more appeared.Will have another brain MRI at end of month.Praying that "D" (darbrafenib) will have kicked in .Hope all goes well for you.Beat  the Beast.    Al

                        Snickers60
                        Participant

                          Hey BEAT THE BEAST AL – and JERRY – here is your CYBER  ((((((( HUG ) ))) !!!!!!!    ๐Ÿ™‚

                          So good to hear from you guys !   It has been a rat race – roller coaster ride here as it has been withyou all I'm sure.   A year to never forget. 

                          The brain mets are a real WRENCH aren't they AL ?    We were devastated !   Wayne handled all of itlike a champ as always,  and the gamma knife went well for him.   ME – yes of course…I was a LOONin the waiting room.  Such hard and trying time.   We are 18 months into this now and feel so wearyand worn, but FIGHT WE WILL !    We will NOT STOP BELIEVIN !   

                          Wayne has celebrated another birthday (2 now) since the beast came back for him, but we are warriors of 23 years off and on and you remember he had colon cancer at age 39.   Waiting is something we should have gotten better at  —— NOT !  :-))) 

                          Pray you guys have great results and we promise to stay in touch better.   

                          Nancy (devoted wife of 3 X Warrior Wayne) 

                          Snickers60
                          Participant

                            Hey BEAT THE BEAST AL – and JERRY – here is your CYBER  ((((((( HUG ) ))) !!!!!!!    ๐Ÿ™‚

                            So good to hear from you guys !   It has been a rat race – roller coaster ride here as it has been withyou all I'm sure.   A year to never forget. 

                            The brain mets are a real WRENCH aren't they AL ?    We were devastated !   Wayne handled all of itlike a champ as always,  and the gamma knife went well for him.   ME – yes of course…I was a LOONin the waiting room.  Such hard and trying time.   We are 18 months into this now and feel so wearyand worn, but FIGHT WE WILL !    We will NOT STOP BELIEVIN !   

                            Wayne has celebrated another birthday (2 now) since the beast came back for him, but we are warriors of 23 years off and on and you remember he had colon cancer at age 39.   Waiting is something we should have gotten better at  —— NOT !  :-))) 

                            Pray you guys have great results and we promise to stay in touch better.   

                            Nancy (devoted wife of 3 X Warrior Wayne) 

                            Snickers60
                            Participant

                              Hey BEAT THE BEAST AL – and JERRY – here is your CYBER  ((((((( HUG ) ))) !!!!!!!    ๐Ÿ™‚

                              So good to hear from you guys !   It has been a rat race – roller coaster ride here as it has been withyou all I'm sure.   A year to never forget. 

                              The brain mets are a real WRENCH aren't they AL ?    We were devastated !   Wayne handled all of itlike a champ as always,  and the gamma knife went well for him.   ME – yes of course…I was a LOONin the waiting room.  Such hard and trying time.   We are 18 months into this now and feel so wearyand worn, but FIGHT WE WILL !    We will NOT STOP BELIEVIN !   

                              Wayne has celebrated another birthday (2 now) since the beast came back for him, but we are warriors of 23 years off and on and you remember he had colon cancer at age 39.   Waiting is something we should have gotten better at  —— NOT !  :-))) 

                              Pray you guys have great results and we promise to stay in touch better.   

                              Nancy (devoted wife of 3 X Warrior Wayne) 

                            aldakota22
                            Participant

                              See that you are on darbrafenib.Like you I was a responder long time to "Z" 23 months.Taken off and now on "D" as I now ahve brain mets.Had gamma knife done on 9/3/13.Just had visit with neurosurgeon for MRI and results this past Monday.A little to early to be conclusive but doc says none of the largest mets got bigger or more appeared.Will have another brain MRI at end of month.Praying that "D" (darbrafenib) will have kicked in .Hope all goes well for you.Beat  the Beast.    Al

                              aldakota22
                              Participant

                                See that you are on darbrafenib.Like you I was a responder long time to "Z" 23 months.Taken off and now on "D" as I now ahve brain mets.Had gamma knife done on 9/3/13.Just had visit with neurosurgeon for MRI and results this past Monday.A little to early to be conclusive but doc says none of the largest mets got bigger or more appeared.Will have another brain MRI at end of month.Praying that "D" (darbrafenib) will have kicked in .Hope all goes well for you.Beat  the Beast.    Al

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