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Full 13 months on Zelboraf

Forums General Melanoma Community Full 13 months on Zelboraf

  • Post
    aldakota22
    Participant

      I officially start my 14th month on Zelboraf.Thank God that I am B-raf +.This drug is a lifesaver for me and so many more.Dealing with the side effects for me has been tolerable.They do sort of come and go as I contiue with"Z".I aim to be a glimmer of hope to many stage 4 fighters.I have been following the posts of Dick who is going on 31 months of "Z" and still counting.Hang in there.They will find a cure.Meanwhie never forget to thank God and live. Beat the Beast.  Al

      I officially start my 14th month on Zelboraf.Thank God that I am B-raf +.This drug is a lifesaver for me and so many more.Dealing with the side effects for me has been tolerable.They do sort of come and go as I contiue with"Z".I aim to be a glimmer of hope to many stage 4 fighters.I have been following the posts of Dick who is going on 31 months of "Z" and still counting.Hang in there.They will find a cure.Meanwhie never forget to thank God and live. Beat the Beast.  Al

    Viewing 44 reply threads
    • Replies
        kpcollins31
        Participant

          Nice work, Al. Keep it up.

          Kevin

          kpcollins31
          Participant

            Nice work, Al. Keep it up.

            Kevin

            kpcollins31
            Participant

              Nice work, Al. Keep it up.

              Kevin

              WayneG
              Participant

                Great report Al!  "Z" has been a miracle drug for me as well…finishing up 6 months with excellent results.  I agree, there will be a cure and I am thanking God the melanoma was "revealed" when it was and at a time when "Z" is available.

                Wayne

                Stage IV

                  Anonymous
                  Inactive

                    Dear Esther! 

                    I would like your help asks it.

                    Zelboraf side effect,gastric pain,nausea.there is an experience for you?

                    Thank you

                    Hi:Helga

                    Anonymous
                    Inactive

                      Dear Esther! 

                      I would like your help asks it.

                      Zelboraf side effect,gastric pain,nausea.there is an experience for you?

                      Thank you

                      Hi:Helga

                      Anonymous
                      Inactive

                        Dear Esther! 

                        I would like your help asks it.

                        Zelboraf side effect,gastric pain,nausea.there is an experience for you?

                        Thank you

                        Hi:Helga

                      WayneG
                      Participant

                        Great report Al!  "Z" has been a miracle drug for me as well…finishing up 6 months with excellent results.  I agree, there will be a cure and I am thanking God the melanoma was "revealed" when it was and at a time when "Z" is available.

                        Wayne

                        Stage IV

                        WayneG
                        Participant

                          Great report Al!  "Z" has been a miracle drug for me as well…finishing up 6 months with excellent results.  I agree, there will be a cure and I am thanking God the melanoma was "revealed" when it was and at a time when "Z" is available.

                          Wayne

                          Stage IV

                          awillett1991
                          Participant
                            Great news Al! We participated in Miles for Melanoma this weekend. Tim T spoke and said he truly believes that in 5 years half of all people with melanoma could be cured. Praying that we can ALL can be cured.

                            I am 13 days off Z and for the first time in almost 6 months I thought something tasted spicy. My husband said I sounded like our picky eating teenager!! I realized it was Zel – or lack thereof. ๐Ÿ˜‰

                            I’m so glad you continue to post, it really helped motivate me during my trip thru all the Side Zeffects.

                            Amy

                            awillett1991
                            Participant
                              Great news Al! We participated in Miles for Melanoma this weekend. Tim T spoke and said he truly believes that in 5 years half of all people with melanoma could be cured. Praying that we can ALL can be cured.

                              I am 13 days off Z and for the first time in almost 6 months I thought something tasted spicy. My husband said I sounded like our picky eating teenager!! I realized it was Zel – or lack thereof. ๐Ÿ˜‰

                              I’m so glad you continue to post, it really helped motivate me during my trip thru all the Side Zeffects.

                              Amy

                              awillett1991
                              Participant
                                Great news Al! We participated in Miles for Melanoma this weekend. Tim T spoke and said he truly believes that in 5 years half of all people with melanoma could be cured. Praying that we can ALL can be cured.

                                I am 13 days off Z and for the first time in almost 6 months I thought something tasted spicy. My husband said I sounded like our picky eating teenager!! I realized it was Zel – or lack thereof. ๐Ÿ˜‰

                                I’m so glad you continue to post, it really helped motivate me during my trip thru all the Side Zeffects.

                                Amy

                                dellriol
                                Participant

                                  That's good news! It's so encouraging to hear from others doing well on zelboraf.  And the advances in melanoma treatment are unbelievable! When I had my primary in 2005 there was like….maybe interferon for advanced cases, radiation and chemo that probably wouldn't do much….Now there is actually HOPE!

                                  dellriol
                                  Participant

                                    That's good news! It's so encouraging to hear from others doing well on zelboraf.  And the advances in melanoma treatment are unbelievable! When I had my primary in 2005 there was like….maybe interferon for advanced cases, radiation and chemo that probably wouldn't do much….Now there is actually HOPE!

                                    dellriol
                                    Participant

                                      That's good news! It's so encouraging to hear from others doing well on zelboraf.  And the advances in melanoma treatment are unbelievable! When I had my primary in 2005 there was like….maybe interferon for advanced cases, radiation and chemo that probably wouldn't do much….Now there is actually HOPE!

                                      Linny
                                      Participant

                                        I'm SO glad to hear the good news Al! I hope that you, "Z", and NED remain the best of friends. yes

                                        Linny
                                        Participant

                                          I'm SO glad to hear the good news Al! I hope that you, "Z", and NED remain the best of friends. yes

                                          Linny
                                          Participant

                                            I'm SO glad to hear the good news Al! I hope that you, "Z", and NED remain the best of friends. yes

                                            AllyNTAus
                                            Participant

                                              Al great news, and I also follow both yours and Dick's progress on Z, it is a great encouragement as a fellow BRAF+ person – I believe my BRAF inhibitor is saving my life too

                                              Ally

                                              AllyNTAus
                                              Participant

                                                Al great news, and I also follow both yours and Dick's progress on Z, it is a great encouragement as a fellow BRAF+ person – I believe my BRAF inhibitor is saving my life too

                                                Ally

                                                AllyNTAus
                                                Participant

                                                  Al great news, and I also follow both yours and Dick's progress on Z, it is a great encouragement as a fellow BRAF+ person – I believe my BRAF inhibitor is saving my life too

                                                  Ally

                                                  H555
                                                  Participant
                                                    Outstanding news. I love seeing people here report such success with Z. I just finished month 6 an I’m down to to one met under 10mm in my left lung. Congratulations !
                                                    H555
                                                    Participant
                                                      Outstanding news. I love seeing people here report such success with Z. I just finished month 6 an I’m down to to one met under 10mm in my left lung. Congratulations !
                                                      H555
                                                      Participant
                                                        Outstanding news. I love seeing people here report such success with Z. I just finished month 6 an I’m down to to one met under 10mm in my left lung. Congratulations !
                                                        joebronze54
                                                        Participant

                                                          I am a 3b patient and haven't started any treatment yet. All that i have heard about is either interferon or the clinical study of Yervoy. These two seem to be the go too drug. I am very interested in this zelboraf drug. Could you give me an idea which institutions offer this. I am heading to Sloan in NYC at the end of the month and was hoping that that might be an option. Still confused and still grasping for answers

                                                          joebronze54
                                                          Participant

                                                            I am a 3b patient and haven't started any treatment yet. All that i have heard about is either interferon or the clinical study of Yervoy. These two seem to be the go too drug. I am very interested in this zelboraf drug. Could you give me an idea which institutions offer this. I am heading to Sloan in NYC at the end of the month and was hoping that that might be an option. Still confused and still grasping for answers

                                                              aldakota22
                                                              Participant

                                                                To aswr your question on "Z".It is FDA approved and any oncologist  can prescribe it .The one criteria is tha you were tested and found to be B-raf  +.  Sloan ketering docs can fill you in and on thetetment optionsyou have. Keep us posted on your treament.Will keep you in my prayers.Beat the Beast.   Al

                                                                aldakota22
                                                                Participant

                                                                  To aswr your question on "Z".It is FDA approved and any oncologist  can prescribe it .The one criteria is tha you were tested and found to be B-raf  +.  Sloan ketering docs can fill you in and on thetetment optionsyou have. Keep us posted on your treament.Will keep you in my prayers.Beat the Beast.   Al

                                                                  aldakota22
                                                                  Participant

                                                                    To aswr your question on "Z".It is FDA approved and any oncologist  can prescribe it .The one criteria is tha you were tested and found to be B-raf  +.  Sloan ketering docs can fill you in and on thetetment optionsyou have. Keep us posted on your treament.Will keep you in my prayers.Beat the Beast.   Al

                                                                    Linny
                                                                    Participant

                                                                      Zelboraf is available only for those who are Stage IV patients and have a BRAF mutation in their tumor. For Stage IIIB there aren't many options yet. But there may be some trials for which you may qualify. If there are, rest assured your doctor at Sloan will know about them. 

                                                                      Interferon is not being used as much as it was in the past. Some folks experience some pretty bad side effects from it. When I was given my options, interferon was mentioned and I was shocked to learn that it didn't offer that much of an advantage over "watch and wait".

                                                                      But whether you choose it is up to you. Some folks don't want to give up a year of their lives dealing with the side effects while others don't feel comfortable doing nothing.

                                                                      Linny
                                                                      Participant

                                                                        Zelboraf is available only for those who are Stage IV patients and have a BRAF mutation in their tumor. For Stage IIIB there aren't many options yet. But there may be some trials for which you may qualify. If there are, rest assured your doctor at Sloan will know about them. 

                                                                        Interferon is not being used as much as it was in the past. Some folks experience some pretty bad side effects from it. When I was given my options, interferon was mentioned and I was shocked to learn that it didn't offer that much of an advantage over "watch and wait".

                                                                        But whether you choose it is up to you. Some folks don't want to give up a year of their lives dealing with the side effects while others don't feel comfortable doing nothing.

                                                                        JerryfromFauq
                                                                        Participant

                                                                          Linny,

                                                                          http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm268301.htm

                                                                          does not totally limit Zelboraf to stage IV patients. 

                                                                          Vemurafenib

                                                                          On August 17, 2011, the U. S. Food and Drug Administration approved vemurafenib tablets (ZELBORAF, Hoffmann-La Roche Inc.) for the treatment of patients with unresectable or metastatic melanoma with the BRAFV600E mutation as detected by an FDA-approved test. 

                                                                           

                                                                          If ones Stage III tumor is in such a location that the surgeon says it is too dangerous to total try surgical removal, then it is considered unresectable.

                                                                          JerryfromFauq
                                                                          Participant

                                                                            Linny,

                                                                            http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm268301.htm

                                                                            does not totally limit Zelboraf to stage IV patients. 

                                                                            Vemurafenib

                                                                            On August 17, 2011, the U. S. Food and Drug Administration approved vemurafenib tablets (ZELBORAF, Hoffmann-La Roche Inc.) for the treatment of patients with unresectable or metastatic melanoma with the BRAFV600E mutation as detected by an FDA-approved test. 

                                                                             

                                                                            If ones Stage III tumor is in such a location that the surgeon says it is too dangerous to total try surgical removal, then it is considered unresectable.

                                                                            JerryfromFauq
                                                                            Participant

                                                                              Linny,

                                                                              http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm268301.htm

                                                                              does not totally limit Zelboraf to stage IV patients. 

                                                                              Vemurafenib

                                                                              On August 17, 2011, the U. S. Food and Drug Administration approved vemurafenib tablets (ZELBORAF, Hoffmann-La Roche Inc.) for the treatment of patients with unresectable or metastatic melanoma with the BRAFV600E mutation as detected by an FDA-approved test. 

                                                                               

                                                                              If ones Stage III tumor is in such a location that the surgeon says it is too dangerous to total try surgical removal, then it is considered unresectable.

                                                                              Linny
                                                                              Participant

                                                                                Wow. Thanks, Jerry. I appreciate you mentioning this.

                                                                                Linny
                                                                                Participant

                                                                                  Wow. Thanks, Jerry. I appreciate you mentioning this.

                                                                                  Linny
                                                                                  Participant

                                                                                    Wow. Thanks, Jerry. I appreciate you mentioning this.

                                                                                    Linny
                                                                                    Participant

                                                                                      Zelboraf is available only for those who are Stage IV patients and have a BRAF mutation in their tumor. For Stage IIIB there aren't many options yet. But there may be some trials for which you may qualify. If there are, rest assured your doctor at Sloan will know about them. 

                                                                                      Interferon is not being used as much as it was in the past. Some folks experience some pretty bad side effects from it. When I was given my options, interferon was mentioned and I was shocked to learn that it didn't offer that much of an advantage over "watch and wait".

                                                                                      But whether you choose it is up to you. Some folks don't want to give up a year of their lives dealing with the side effects while others don't feel comfortable doing nothing.

                                                                                    joebronze54
                                                                                    Participant

                                                                                      I am a 3b patient and haven't started any treatment yet. All that i have heard about is either interferon or the clinical study of Yervoy. These two seem to be the go too drug. I am very interested in this zelboraf drug. Could you give me an idea which institutions offer this. I am heading to Sloan in NYC at the end of the month and was hoping that that might be an option. Still confused and still grasping for answers

                                                                                      Richard_K
                                                                                      Participant

                                                                                         

                                                                                        Hey Al, I can feel you breathing down my neck.  Keep it up!

                                                                                        Dick

                                                                                        Richard_K
                                                                                        Participant

                                                                                           

                                                                                          Hey Al, I can feel you breathing down my neck.  Keep it up!

                                                                                          Dick

                                                                                          Richard_K
                                                                                          Participant

                                                                                             

                                                                                            Hey Al, I can feel you breathing down my neck.  Keep it up!

                                                                                            Dick

                                                                                            Kellie-T
                                                                                            Participant

                                                                                              Great news Al! I just had scans on Friday and love the second page "no evidence of metastatic disease present". I've been on Zelboraf since February and I agree with you, the side effects are quite manageable. Heck, the day after scans I did a two hour charity Zumba-thon at our local college. Loving life!

                                                                                              Kellie-T
                                                                                              Participant

                                                                                                Great news Al! I just had scans on Friday and love the second page "no evidence of metastatic disease present". I've been on Zelboraf since February and I agree with you, the side effects are quite manageable. Heck, the day after scans I did a two hour charity Zumba-thon at our local college. Loving life!

                                                                                                Kellie-T
                                                                                                Participant

                                                                                                  Great news Al! I just had scans on Friday and love the second page "no evidence of metastatic disease present". I've been on Zelboraf since February and I agree with you, the side effects are quite manageable. Heck, the day after scans I did a two hour charity Zumba-thon at our local college. Loving life!

                                                                                                  JerryfromFauq
                                                                                                  Participant

                                                                                                    I remember when the main talk was that after a matter of months 50% of responders, stopped responding.  Even though not a B-Raf person, I wondered about the other 50%  of responders.  By my way of thinking anything that buys time is a step forward and if 50% of Melanoma patients have B-Raf, and 50% of those respond to Zelboraf and 50% of those have a lenthy or complete response then we have reached a new high of 12.5% of Stage IV melanoma patients that just might survive this disease from one type of treatment alone.  We're creeping up on answers!

                                                                                                    JerryfromFauq
                                                                                                    Participant

                                                                                                      I remember when the main talk was that after a matter of months 50% of responders, stopped responding.  Even though not a B-Raf person, I wondered about the other 50%  of responders.  By my way of thinking anything that buys time is a step forward and if 50% of Melanoma patients have B-Raf, and 50% of those respond to Zelboraf and 50% of those have a lenthy or complete response then we have reached a new high of 12.5% of Stage IV melanoma patients that just might survive this disease from one type of treatment alone.  We're creeping up on answers!

                                                                                                      JerryfromFauq
                                                                                                      Participant

                                                                                                        I remember when the main talk was that after a matter of months 50% of responders, stopped responding.  Even though not a B-Raf person, I wondered about the other 50%  of responders.  By my way of thinking anything that buys time is a step forward and if 50% of Melanoma patients have B-Raf, and 50% of those respond to Zelboraf and 50% of those have a lenthy or complete response then we have reached a new high of 12.5% of Stage IV melanoma patients that just might survive this disease from one type of treatment alone.  We're creeping up on answers!

                                                                                                        meldad
                                                                                                        Participant

                                                                                                          Al, what great news!!!

                                                                                                          I've been following your progess for a long time now. Your post's continue to give me and sooo many other's hope!

                                                                                                          My dad has been on Zelboraf since June 2012, on days I feel anxious I log onto this board looking for post's by yourself and Dick.

                                                                                                          Thank you for keeping us all updated and sharing your good news!

                                                                                                          meldad
                                                                                                          Participant

                                                                                                            Al, what great news!!!

                                                                                                            I've been following your progess for a long time now. Your post's continue to give me and sooo many other's hope!

                                                                                                            My dad has been on Zelboraf since June 2012, on days I feel anxious I log onto this board looking for post's by yourself and Dick.

                                                                                                            Thank you for keeping us all updated and sharing your good news!

                                                                                                            meldad
                                                                                                            Participant

                                                                                                              Al, what great news!!!

                                                                                                              I've been following your progess for a long time now. Your post's continue to give me and sooo many other's hope!

                                                                                                              My dad has been on Zelboraf since June 2012, on days I feel anxious I log onto this board looking for post's by yourself and Dick.

                                                                                                              Thank you for keeping us all updated and sharing your good news!

                                                                                                              Tina D
                                                                                                              Participant

                                                                                                                I just love seeing thses milemarkers pass for you! Rejoicing with you as you celebrate and thanking God for the life He continues to bless you with ! And, yes, you cetainly help others who follow along to have hope!

                                                                                                                Thanks for posting!!

                                                                                                                Tina

                                                                                                                Tina D
                                                                                                                Participant

                                                                                                                  I just love seeing thses milemarkers pass for you! Rejoicing with you as you celebrate and thanking God for the life He continues to bless you with ! And, yes, you cetainly help others who follow along to have hope!

                                                                                                                  Thanks for posting!!

                                                                                                                  Tina

                                                                                                                  Tina D
                                                                                                                  Participant

                                                                                                                    I just love seeing thses milemarkers pass for you! Rejoicing with you as you celebrate and thanking God for the life He continues to bless you with ! And, yes, you cetainly help others who follow along to have hope!

                                                                                                                    Thanks for posting!!

                                                                                                                    Tina

                                                                                                                      Mickey n Jo
                                                                                                                      Participant

                                                                                                                        Al, wonderful news!  You give us all hope.

                                                                                                                        Mickey n Jo
                                                                                                                        Participant

                                                                                                                          Al, wonderful news!  You give us all hope.

                                                                                                                          Mickey n Jo
                                                                                                                          Participant

                                                                                                                            Al, wonderful news!  You give us all hope.

                                                                                                                          Retired41505
                                                                                                                          Participant

                                                                                                                            Awesome news! My son in law has been on Z since June 2012. He is stage IV. Started with 14 lesions in the brain. Last MRI shows 6 measureable lesions. This drug has been a miracle and provided hope for many.

                                                                                                                            Keep fighting the fight. My good thoughts and prayers to each of you!

                                                                                                                            Retired41505
                                                                                                                            Participant

                                                                                                                              Awesome news! My son in law has been on Z since June 2012. He is stage IV. Started with 14 lesions in the brain. Last MRI shows 6 measureable lesions. This drug has been a miracle and provided hope for many.

                                                                                                                              Keep fighting the fight. My good thoughts and prayers to each of you!

                                                                                                                              Retired41505
                                                                                                                              Participant

                                                                                                                                Awesome news! My son in law has been on Z since June 2012. He is stage IV. Started with 14 lesions in the brain. Last MRI shows 6 measureable lesions. This drug has been a miracle and provided hope for many.

                                                                                                                                Keep fighting the fight. My good thoughts and prayers to each of you!

                                                                                                                                  NYKaren
                                                                                                                                  Participant
                                                                                                                                    Al, that’s fantastic news. I’m really happy for you.
                                                                                                                                    Take good care,
                                                                                                                                    karen
                                                                                                                                    NYKaren
                                                                                                                                    Participant
                                                                                                                                      Al, that’s fantastic news. I’m really happy for you.
                                                                                                                                      Take good care,
                                                                                                                                      karen
                                                                                                                                      NYKaren
                                                                                                                                      Participant
                                                                                                                                        Al, that’s fantastic news. I’m really happy for you.
                                                                                                                                        Take good care,
                                                                                                                                        karen
                                                                                                                                      Mike. C
                                                                                                                                      Participant

                                                                                                                                        Just found this site and am so glad to hear the positive news about Z! I have Stage 4 and have had 2 craniotomies over the past 8 months to remove tumors and I have been been on Z for 4 1/2 months.  Good Luck to all and keep up the positive news and keep fighting the fight!

                                                                                                                                        Mike. C
                                                                                                                                        Participant

                                                                                                                                          Just found this site and am so glad to hear the positive news about Z! I have Stage 4 and have had 2 craniotomies over the past 8 months to remove tumors and I have been been on Z for 4 1/2 months.  Good Luck to all and keep up the positive news and keep fighting the fight!

                                                                                                                                          Mike. C
                                                                                                                                          Participant

                                                                                                                                            Just found this site and am so glad to hear the positive news about Z! I have Stage 4 and have had 2 craniotomies over the past 8 months to remove tumors and I have been been on Z for 4 1/2 months.  Good Luck to all and keep up the positive news and keep fighting the fight!

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