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Zelboraf DOES work against brain mets

Forums Cutaneous Melanoma Community Zelboraf DOES work against brain mets

  • Post
    kellygrl
    Participant

      Just wanted to share my husbands story…….   Aug 09 he had melanoma on his back, wide excision & sentinel node biopsy which came back negative for malignancy. So, in the clear until Mar '12, headaches which we contributed to stress due to his Air Force retirement, we moved, both started new jobs and bought a new house!

      Just wanted to share my husbands story…….   Aug 09 he had melanoma on his back, wide excision & sentinel node biopsy which came back negative for malignancy. So, in the clear until Mar '12, headaches which we contributed to stress due to his Air Force retirement, we moved, both started new jobs and bought a new house! NO STRESS THERE!!!  Then the start of the 3rd wk of these headaches, he threw up on Mon….  so got him to the doctor that day, MRI Thurs 3/22, then in the hospital about an hr later after our family practice doctor came to our home to tell us the devastating news that he had about 13 brain tumors. We got him to the hospital so he could be put on I.V. steroids, within 24 hrs he was back to his old self, had other scans & everything was clear.  

      He then had a biopsy to determine if he had the BRAF mutation for Zelboraf…  yeyyy!!! He did, but before that, we gave WBR a shot…  18 treatments, melanoma fought back…  πŸ™ DEVASTATED!!!!!  Radiation did make him feel like crap after the 3rd week or so, but now we also think that may have been because the melanoma grew. :/ Other then that, no side effctes from WBR. Anyway, started max dose Z first week of June, severe sun sensitivity first few wks, few new skin tags that have fallen off, very minimal side effects & MRI 6wks later….  REDUCTION in ALL  tumors! Then labs for his liver were extremely high, off Z for a few wks, labs normal and on lower dose )3 pills twice a day…   even fewer side effects & next MRI  more reduction in the now only 11 tumors! 

      My husband has been on Z for 4 mos, hair is coming back, feels great, looks great…  people just meeting him thinks he's in remission!  He's been back to work full-time since July 9th, takes a nap when he gets home, but who wouldn't want to do that.  πŸ™‚ He's been back to yardwork, helping with the house, etc..

       Now, I always wonder what kind of health people are in who are doing well, not so well, etc…..   my husband is 41, non-smoker, worked out atleast 5 days a week,  excellent health, we had always had a pretty good diet, but ate junk food here and there & of course the occasional cocktail… πŸ˜‰   but since all of this, he has not had an ounce of alcohol, no soda, almost no sugar & hasn't had any fast food. We do not eat 100% healthy ,I try to stick the the basic cancer fighting foods.  We mostly eat salads with dark leafy greens & he LOVES tomatoes, antioxidant smoothies (berries, flaxseed), try to load him with lean protein and he's loving cottage cheese. We don't do a raw diet and we still eat meat, but it's not very often & he drinks a ton of water.   

      We know people can build a resistance to Z, we'll cross that bridge IF we come to it, but for now we are just living life and enjoying it!! He feels great and we are running with it! So to all of you wondering about the brain mets….   for us it IS WORKING!!!!!  Hang in there, keep strong, BE POSITIVE!!

    Viewing 17 reply threads
    • Replies
        JC
        Participant

          It confuses me how sentinel node biopsies can be negative but then still have tumors spread.  Was it a deep lesion?

          JC
          Participant

            It confuses me how sentinel node biopsies can be negative but then still have tumors spread.  Was it a deep lesion?

            JC
            Participant

              It confuses me how sentinel node biopsies can be negative but then still have tumors spread.  Was it a deep lesion?

                kellygrl
                Participant

                  Melanoma IS confusing……   it does happen though. I was just looking through his files before I posted to get the actual depth, but couldn't find it.

                  kellygrl
                  Participant

                    Melanoma IS confusing……   it does happen though. I was just looking through his files before I posted to get the actual depth, but couldn't find it.

                    kellygrl
                    Participant

                      Melanoma IS confusing……   it does happen though. I was just looking through his files before I posted to get the actual depth, but couldn't find it.

                      lhaley
                      Participant

                        To anonymous,  I became stage 4 in 2006, the primary was in 1979!   First lymphnode with melanoma was in 2011 and then went to the brain.  melanoma can travel in the blood.

                         

                        I love to hear about 13 so far response!  I've been on it for 6 weeks for my brain mets.

                        Linda

                        kellygrl
                        Participant

                          Hi Linda! Any scans yet? How are you doing on the Z?

                          kellygrl
                          Participant

                            Hi Linda! Any scans yet? How are you doing on the Z?

                            kellygrl
                            Participant

                              Hi Linda! Any scans yet? How are you doing on the Z?

                              lhaley
                              Participant

                                To anonymous,  I became stage 4 in 2006, the primary was in 1979!   First lymphnode with melanoma was in 2011 and then went to the brain.  melanoma can travel in the blood.

                                 

                                I love to hear about 13 so far response!  I've been on it for 6 weeks for my brain mets.

                                Linda

                                lhaley
                                Participant

                                  To anonymous,  I became stage 4 in 2006, the primary was in 1979!   First lymphnode with melanoma was in 2011 and then went to the brain.  melanoma can travel in the blood.

                                   

                                  I love to hear about 13 so far response!  I've been on it for 6 weeks for my brain mets.

                                  Linda

                                aldakota22
                                Participant

                                  Great news that the "Z" is working so well.The drug in some people is working long term.I am on it now for almost 13 months .Praying that it keeps working for all users.Beat the Beast.  Al

                                  aldakota22
                                  Participant

                                    Great news that the "Z" is working so well.The drug in some people is working long term.I am on it now for almost 13 months .Praying that it keeps working for all users.Beat the Beast.  Al

                                      kellygrl
                                      Participant

                                        Great to hear Al!! I plan on sharing the same postive results about my husband in 13 mos!! The beast is GOING DOWN!!

                                        kellygrl
                                        Participant

                                          Great to hear Al!! I plan on sharing the same postive results about my husband in 13 mos!! The beast is GOING DOWN!!

                                          kellygrl
                                          Participant

                                            Great to hear Al!! I plan on sharing the same postive results about my husband in 13 mos!! The beast is GOING DOWN!!

                                          aldakota22
                                          Participant

                                            Great news that the "Z" is working so well.The drug in some people is working long term.I am on it now for almost 13 months .Praying that it keeps working for all users.Beat the Beast.  Al

                                            swissfarm7
                                            Participant

                                              Thanks for sharing!  I can only imagine what a relief it is to be on this positive track.  I am relatively new here ~ my 45 yo husband was diagnosed in July and is Stage 3B ~ and I have trouble following the various acronyms and so on.  What is WBR?  Also, there's a lot of talk here (on the site) lately about Zelboraf; is it a drug approved only for Stage IV or tumors that can't be surgically removed?  Thanks for the help and all the best to you and your dh!

                                              Warmly,

                                              Colleen

                                              swissfarm7
                                              Participant

                                                Thanks for sharing!  I can only imagine what a relief it is to be on this positive track.  I am relatively new here ~ my 45 yo husband was diagnosed in July and is Stage 3B ~ and I have trouble following the various acronyms and so on.  What is WBR?  Also, there's a lot of talk here (on the site) lately about Zelboraf; is it a drug approved only for Stage IV or tumors that can't be surgically removed?  Thanks for the help and all the best to you and your dh!

                                                Warmly,

                                                Colleen

                                                swissfarm7
                                                Participant

                                                  Thanks for sharing!  I can only imagine what a relief it is to be on this positive track.  I am relatively new here ~ my 45 yo husband was diagnosed in July and is Stage 3B ~ and I have trouble following the various acronyms and so on.  What is WBR?  Also, there's a lot of talk here (on the site) lately about Zelboraf; is it a drug approved only for Stage IV or tumors that can't be surgically removed?  Thanks for the help and all the best to you and your dh!

                                                  Warmly,

                                                  Colleen

                                                    kellygrl
                                                    Participant

                                                      Hi Colleen,

                                                          Sorry to hear about your husband, but I swear having a positive attitude will really help get you thru! I know it's hard at times & I still have little moments alone when I think abut the "what if"…..   but then I think about the THANK THE LORD this happened now since there are new treatments like Zelboraf! Yes, it is for tumors which cannot be surgically removed & you have to test postive for the BRAF mutation which this therapy targets.  http://www.zelboraf.com

                                                         Best of luck!! Hang in there!

                                                        Kelly

                                                      Oh, WBR stands for Whole Brain Radiation. Since he has so many tumors, they had to attack the whole noggin! Some people don't agree with it, can really take a toll, but since my husband doesn't have any other issues and pretty strong guy, he went with it! Radiation attacking melanoma is like a roll off the dice, but a chance he was willing to take.

                                                      kellygrl
                                                      Participant

                                                        Hi Colleen,

                                                            Sorry to hear about your husband, but I swear having a positive attitude will really help get you thru! I know it's hard at times & I still have little moments alone when I think abut the "what if"…..   but then I think about the THANK THE LORD this happened now since there are new treatments like Zelboraf! Yes, it is for tumors which cannot be surgically removed & you have to test postive for the BRAF mutation which this therapy targets.  http://www.zelboraf.com

                                                           Best of luck!! Hang in there!

                                                          Kelly

                                                        Oh, WBR stands for Whole Brain Radiation. Since he has so many tumors, they had to attack the whole noggin! Some people don't agree with it, can really take a toll, but since my husband doesn't have any other issues and pretty strong guy, he went with it! Radiation attacking melanoma is like a roll off the dice, but a chance he was willing to take.

                                                        kellygrl
                                                        Participant

                                                          Hi Colleen,

                                                              Sorry to hear about your husband, but I swear having a positive attitude will really help get you thru! I know it's hard at times & I still have little moments alone when I think abut the "what if"…..   but then I think about the THANK THE LORD this happened now since there are new treatments like Zelboraf! Yes, it is for tumors which cannot be surgically removed & you have to test postive for the BRAF mutation which this therapy targets.  http://www.zelboraf.com

                                                             Best of luck!! Hang in there!

                                                            Kelly

                                                          Oh, WBR stands for Whole Brain Radiation. Since he has so many tumors, they had to attack the whole noggin! Some people don't agree with it, can really take a toll, but since my husband doesn't have any other issues and pretty strong guy, he went with it! Radiation attacking melanoma is like a roll off the dice, but a chance he was willing to take.

                                                        triciad
                                                        Participant

                                                          Great news…sending prayers for continued success!!!

                                                          triciad
                                                          Participant

                                                            Great news…sending prayers for continued success!!!

                                                            triciad
                                                            Participant

                                                              Great news…sending prayers for continued success!!!

                                                                kellygrl
                                                                Participant

                                                                  Thank you! πŸ™‚

                                                                  kellygrl
                                                                  Participant

                                                                    Thank you! πŸ™‚

                                                                    kellygrl
                                                                    Participant

                                                                      Thank you! πŸ™‚

                                                                    POW
                                                                    Participant

                                                                      Thank you for shaing such wonderful news! My brother with brain mets is on Z, too, and your experience gives us hope. I am so happy for you and for your husband. You both sound like such strong, positive people! I look forward to sharing our journey with you.

                                                                      POW
                                                                      Participant

                                                                        Thank you for shaing such wonderful news! My brother with brain mets is on Z, too, and your experience gives us hope. I am so happy for you and for your husband. You both sound like such strong, positive people! I look forward to sharing our journey with you.

                                                                        POW
                                                                        Participant

                                                                          Thank you for shaing such wonderful news! My brother with brain mets is on Z, too, and your experience gives us hope. I am so happy for you and for your husband. You both sound like such strong, positive people! I look forward to sharing our journey with you.

                                                                            kellygrl
                                                                            Participant

                                                                              Thank you! Staying strong, postive and having a sense of humor gets us thru….   what else can you do!? Best of luck to your brother & postive thoughts your way! Keep you posted.

                                                                                 Kelly πŸ™‚

                                                                              kellygrl
                                                                              Participant

                                                                                Thank you! Staying strong, postive and having a sense of humor gets us thru….   what else can you do!? Best of luck to your brother & postive thoughts your way! Keep you posted.

                                                                                   Kelly πŸ™‚

                                                                                kellygrl
                                                                                Participant

                                                                                  Thank you! Staying strong, postive and having a sense of humor gets us thru….   what else can you do!? Best of luck to your brother & postive thoughts your way! Keep you posted.

                                                                                     Kelly πŸ™‚

                                                                                Richard_K
                                                                                Participant

                                                                                   

                                                                                  Very nice to hear about the Zelboraf results, especially as it concerns the brain; a lot of people are looking for that.  One thing to caution your husband about, do not overdo it with the housework! (lol)

                                                                                  Best of luck.

                                                                                  Dick

                                                                                  Richard_K
                                                                                  Participant

                                                                                     

                                                                                    Very nice to hear about the Zelboraf results, especially as it concerns the brain; a lot of people are looking for that.  One thing to caution your husband about, do not overdo it with the housework! (lol)

                                                                                    Best of luck.

                                                                                    Dick

                                                                                      kellygrl
                                                                                      Participant

                                                                                        Hey now!!! A little housework never hurt anybody! πŸ˜›    Congrats on your Sick Sense award! πŸ™‚

                                                                                        kellygrl
                                                                                        Participant

                                                                                          Hey now!!! A little housework never hurt anybody! πŸ˜›    Congrats on your Sick Sense award! πŸ™‚

                                                                                          kellygrl
                                                                                          Participant

                                                                                            Hey now!!! A little housework never hurt anybody! πŸ˜›    Congrats on your Sick Sense award! πŸ™‚

                                                                                          Richard_K
                                                                                          Participant

                                                                                             

                                                                                            Very nice to hear about the Zelboraf results, especially as it concerns the brain; a lot of people are looking for that.  One thing to caution your husband about, do not overdo it with the housework! (lol)

                                                                                            Best of luck.

                                                                                            Dick

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