Full 13 months on Zelboraf

This topic has 66 replies, 19 voices, and was last updated 11 years, 8 months ago by Anonymous.

Post

- October 10, 2012 at 6:12 pm
- Quote
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

- - October 10, 2012 at 6:47 pm
  - Quote
  kpcollins31
  Participant
  Nice work, Al. Keep it up.
  
  Kevin
- - October 10, 2012 at 6:47 pm
  - Quote
  kpcollins31
  Participant
  Nice work, Al. Keep it up.
  
  Kevin
- - October 10, 2012 at 6:47 pm
  - Quote
  kpcollins31
  Participant
  Nice work, Al. Keep it up.
  
  Kevin
- - October 10, 2012 at 6:48 pm
  - Quote
  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
  - April 7, 2013 at 2:06 pm
    
    Quote
    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
  - April 7, 2013 at 2:06 pm
    
    Quote
    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
  - April 7, 2013 at 2:06 pm
    
    Quote
    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
- - October 10, 2012 at 6:48 pm
  - Quote
  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
- - October 10, 2012 at 6:48 pm
  - Quote
  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
- - October 10, 2012 at 8:18 pm
  - Quote
  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. 😉
  
  I’m so glad you continue to post, it really helped motivate me during my trip thru all the Side Zeffects.
  
  Amy
- - October 10, 2012 at 8:18 pm
  - Quote
  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. 😉
  
  I’m so glad you continue to post, it really helped motivate me during my trip thru all the Side Zeffects.
  
  Amy
- - October 10, 2012 at 8:18 pm
  - Quote
  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. 😉
  
  I’m so glad you continue to post, it really helped motivate me during my trip thru all the Side Zeffects.
  
  Amy
- - October 10, 2012 at 9:01 pm
  - Quote
  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!
- - October 10, 2012 at 9:01 pm
  - Quote
  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!
- - October 10, 2012 at 9:01 pm
  - Quote
  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!
- - October 10, 2012 at 9:09 pm
  - Quote
  Linny
  Participant
  I'm SO glad to hear the good news Al! I hope that you, "Z", and NED remain the best of friends.
- - October 10, 2012 at 9:09 pm
  - Quote
  Linny
  Participant
  I'm SO glad to hear the good news Al! I hope that you, "Z", and NED remain the best of friends.
- - October 10, 2012 at 9:09 pm
  - Quote
  Linny
  Participant
  I'm SO glad to hear the good news Al! I hope that you, "Z", and NED remain the best of friends.
- - October 11, 2012 at 12:34 am
  - Quote
  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
- - October 11, 2012 at 12:34 am
  - Quote
  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
- - October 11, 2012 at 12:34 am
  - Quote
  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
- - October 11, 2012 at 4:53 am
  - Quote
  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 !
- - October 11, 2012 at 4:53 am
  - Quote
  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 !
- - October 11, 2012 at 4:53 am
  - Quote
  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 !
- - October 11, 2012 at 9:20 pm
  - Quote
  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
- - October 11, 2012 at 9:20 pm
  - Quote
  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
  - October 11, 2012 at 9:46 pm
    
    Quote
    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
  - October 11, 2012 at 9:46 pm
    
    Quote
    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
  - October 11, 2012 at 9:46 pm
    
    Quote
    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
  - October 12, 2012 at 2:40 pm
    
    Quote
    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.
  - October 12, 2012 at 2:40 pm
    
    Quote
    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.
  - October 12, 2012 at 11:31 pm
    
    Quote
    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 BRAF^V600E 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.
  - October 12, 2012 at 11:31 pm
    
    Quote
    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 BRAF^V600E 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.
  - October 12, 2012 at 11:31 pm
    
    Quote
    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 BRAF^V600E 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.
  - October 13, 2012 at 12:51 am
    
    Quote
    Linny
    Participant
    
    Wow. Thanks, Jerry. I appreciate you mentioning this.
  - October 13, 2012 at 12:51 am
    
    Quote
    Linny
    Participant
    
    Wow. Thanks, Jerry. I appreciate you mentioning this.
  - October 13, 2012 at 12:51 am
    
    Quote
    Linny
    Participant
    
    Wow. Thanks, Jerry. I appreciate you mentioning this.
  - October 12, 2012 at 2:40 pm
    
    Quote
    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.
- - October 11, 2012 at 9:20 pm
  - Quote
  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
- - October 11, 2012 at 11:22 pm
  - Quote
  Richard_K
  Participant
  Hey Al, I can feel you breathing down my neck. Keep it up!
  
  Dick
- - October 11, 2012 at 11:22 pm
  - Quote
  Richard_K
  Participant
  Hey Al, I can feel you breathing down my neck. Keep it up!
  
  Dick
- - October 11, 2012 at 11:22 pm
  - Quote
  Richard_K
  Participant
  Hey Al, I can feel you breathing down my neck. Keep it up!
  
  Dick
- - October 11, 2012 at 11:29 pm
  - Quote
  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!
- - October 11, 2012 at 11:29 pm
  - Quote
  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!
- - October 11, 2012 at 11:29 pm
  - Quote
  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!
- - October 12, 2012 at 3:08 am
  - Quote
  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!
- - October 12, 2012 at 3:08 am
  - Quote
  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!
- - October 12, 2012 at 3:08 am
  - Quote
  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!
- - October 12, 2012 at 9:41 am
  - Quote
  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!
- - October 12, 2012 at 9:41 am
  - Quote
  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!
- - October 12, 2012 at 9:41 am
  - Quote
  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!
- - October 12, 2012 at 12:34 pm
  - Quote
  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
- - October 12, 2012 at 12:34 pm
  - Quote
  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
- - October 12, 2012 at 12:34 pm
  - Quote
  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
  - October 12, 2012 at 4:13 pm
    
    Quote
    Mickey n Jo
    Participant
    
    Al, wonderful news! You give us all hope.
  - October 12, 2012 at 4:13 pm
    
    Quote
    Mickey n Jo
    Participant
    
    Al, wonderful news! You give us all hope.
  - October 12, 2012 at 4:13 pm
    
    Quote
    Mickey n Jo
    Participant
    
    Al, wonderful news! You give us all hope.
- - October 13, 2012 at 11:41 am
  - Quote
  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!
- - October 13, 2012 at 11:41 am
  - Quote
  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!
- - October 13, 2012 at 11:41 am
  - Quote
  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!
  - October 13, 2012 at 11:45 pm
    
    Quote
    NYKaren
    Participant
    
    Al, that’s fantastic news. I’m really happy for you.
    Take good care,
    karen
  - October 13, 2012 at 11:45 pm
    
    Quote
    NYKaren
    Participant
    
    Al, that’s fantastic news. I’m really happy for you.
    Take good care,
    karen
  - October 13, 2012 at 11:45 pm
    
    Quote
    NYKaren
    Participant
    
    Al, that’s fantastic news. I’m really happy for you.
    Take good care,
    karen
- - February 13, 2013 at 4:48 pm
  - Quote
  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!
- - February 13, 2013 at 4:48 pm
  - Quote
  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!
- - February 13, 2013 at 4:48 pm
  - Quote
  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!