Thank God for Zelboraf –Hope for fellow wariors
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Thank God for Zelboraf –Hope for fellow wariors

› Forums › General Melanoma Community › Thank God for Zelboraf –Hope for fellow wariors

  • Post
    • December 12, 2012 at 12:28 am
    aldakota22
    Participant

      Yesterday Dec.10, was the end of month 15 on "Z".For me this drug is truly a miracle drug.Side affects for me are manageable Always at full dose.Been working full time all those months and have not missed a day of work cause I was to ill. Like I had posted earlier Dr.

      Yesterday Dec.10, was the end of month 15 on "Z".For me this drug is truly a miracle drug.Side affects for me are manageable Always at full dose.Been working full time all those months and have not missed a day of work cause I was to ill. Like I had posted earlier Dr. Anna  Pavalick demanded that I have a complete physical.Feels I am actually healthy to put melanoma on the back burner.Did have a slightly low iron count ( just under borderline).and a slight PSA concern.Will have the thrill of a colonostophy (my first) this Thursday .Also a visit with the urologist on Dec.20.I post so that maybe I can be a positve story for so many on the drug out there.Dick who posts is my inspiration.I thank Mother Mary every day and pray to God for everyone on thsi site.I really beleive that my positive mind set, support by family and this site are very powerful aids in my fight against the beast melanoma.Science & Medicine will find a life saving treatment in our battle.So many sad stories I hope that during this holiday season I can get someone who feels down, out of their funk with  a real uplifting post.I consider myself as the luckiest man in the world right now.Praying that I will have a very large lucky group join me in this celebration .Beat the Beast.    Al

Viewing 29 reply threads
  • Replies
      • December 12, 2012 at 1:03 am
      hope4cure1
      Participant

      Very awesome, Al, and you certainly deserve it!!!!  Pour yourself an eggnog 🙂

      Hope

      • December 12, 2012 at 1:03 am
      hope4cure1
      Participant

      Very awesome, Al, and you certainly deserve it!!!!  Pour yourself an eggnog 🙂

      Hope

      • December 12, 2012 at 1:03 am
      hope4cure1
      Participant

      Very awesome, Al, and you certainly deserve it!!!!  Pour yourself an eggnog 🙂

      Hope

      • December 12, 2012 at 1:09 am
      washoegal
      Participant

      So very happy for you and for Dick.  I look forward to the day when they understand why "Z" works so well for some and not at all for others.  I think then they really will have a greater understanding of how Mel acts.

      Mary

      Stage 3

        • December 12, 2012 at 1:56 am
        NYKaren
        Participant
        What terrific news, Al.
        I’m so happy for you. You are certainly an inspiration and a good friend too.
        I’ll be toasting you tomorrow at our office party–L’Chaim–To Life!
        Warmly,
        Karen
        • December 12, 2012 at 1:56 am
        NYKaren
        Participant
        What terrific news, Al.
        I’m so happy for you. You are certainly an inspiration and a good friend too.
        I’ll be toasting you tomorrow at our office party–L’Chaim–To Life!
        Warmly,
        Karen
        • December 12, 2012 at 1:56 am
        NYKaren
        Participant
        What terrific news, Al.
        I’m so happy for you. You are certainly an inspiration and a good friend too.
        I’ll be toasting you tomorrow at our office party–L’Chaim–To Life!
        Warmly,
        Karen
      • December 12, 2012 at 1:09 am
      washoegal
      Participant

      So very happy for you and for Dick.  I look forward to the day when they understand why "Z" works so well for some and not at all for others.  I think then they really will have a greater understanding of how Mel acts.

      Mary

      Stage 3

      • December 12, 2012 at 1:09 am
      washoegal
      Participant

      So very happy for you and for Dick.  I look forward to the day when they understand why "Z" works so well for some and not at all for others.  I think then they really will have a greater understanding of how Mel acts.

      Mary

      Stage 3

      • December 12, 2012 at 3:31 am
      bigb0624
      Participant

      wonderful to hear such great news.  I had my first PET Scan today and everything is looking great BUT my doctor said Z will not work forever and eventually my body will reject it.  When that happens is anybody's guess.  But a story like yours gives me hope that i will be on Z for a very long time.

      Happy, healthy holidays.

      Barry

      • December 12, 2012 at 3:31 am
      bigb0624
      Participant

      wonderful to hear such great news.  I had my first PET Scan today and everything is looking great BUT my doctor said Z will not work forever and eventually my body will reject it.  When that happens is anybody's guess.  But a story like yours gives me hope that i will be on Z for a very long time.

      Happy, healthy holidays.

      Barry

      • December 12, 2012 at 3:31 am
      bigb0624
      Participant

      wonderful to hear such great news.  I had my first PET Scan today and everything is looking great BUT my doctor said Z will not work forever and eventually my body will reject it.  When that happens is anybody's guess.  But a story like yours gives me hope that i will be on Z for a very long time.

      Happy, healthy holidays.

      Barry

      • December 12, 2012 at 11:05 am
      buffcody
      Participant

      On my way today for my third ipi infusion inspired by your story, your trust in God, and your strong spirit in this fight we are engaged in.  Thank you and all the best for another fifteen months (at least!!!)

      • December 12, 2012 at 11:05 am
      buffcody
      Participant

      On my way today for my third ipi infusion inspired by your story, your trust in God, and your strong spirit in this fight we are engaged in.  Thank you and all the best for another fifteen months (at least!!!)

      • December 12, 2012 at 11:05 am
      buffcody
      Participant

      On my way today for my third ipi infusion inspired by your story, your trust in God, and your strong spirit in this fight we are engaged in.  Thank you and all the best for another fifteen months (at least!!!)

      • December 12, 2012 at 12:27 pm
      Richard_K
      Participant

       

      Al

      It’s always nice to read your posts, both about your own situation as well as your continued support to others.  Good to hear you’ve crossed another month off and that you get to think about other things besides melanoma.  Looking forward to your colonoscopy? Lol smiley

      Dick

      • December 12, 2012 at 12:27 pm
      Richard_K
      Participant

       

      Al

      It’s always nice to read your posts, both about your own situation as well as your continued support to others.  Good to hear you’ve crossed another month off and that you get to think about other things besides melanoma.  Looking forward to your colonoscopy? Lol smiley

      Dick

      • December 12, 2012 at 12:27 pm
      Richard_K
      Participant

       

      Al

      It’s always nice to read your posts, both about your own situation as well as your continued support to others.  Good to hear you’ve crossed another month off and that you get to think about other things besides melanoma.  Looking forward to your colonoscopy? Lol smiley

      Dick

      • December 12, 2012 at 2:37 pm
      Tina D
      Participant

      Always SO great to see your posts. Wishing you a blessed Christmas and I'm so glad you have all this good news to bring in the New Year with! Thank you for being so faithful to share! Wishing you many more years of good health,,,

      Tina

        • December 12, 2012 at 8:44 pm
        Snickers60
        Participant

        Way to go, BEAT THE BEAST AL !  :-))   WAY TO TO !      Wayne always enjoys your post and is talking about you.   He now has 6 months with the new name "NED" on ZEL, and pray it will continue for a long time.   Dr. B said he was one of the few (4%) complete responders AGAIN just last week.     He also told him that at the one year mark, they may take him off ZEL and SEE what happens.  That would be June 2013, so we'll see. 

        Have you found anything that helps the fatigue ?   Wayne continues to work also but is wiped out nights/weekends.   We found B-1 (benfotiadine) for the neuropathy pain and he is now sleeping and not crying through the night with those awful shooting neuropathy pains in his legs/feet.    Getting fatigue under control would be great.  Share tips if you have any….thanks.    

        You have been an inspiration to us, and we pray for you CONTINUED GOOD REPORTS FOR DECADES TO COME !

        KEEP ON KEEPING ON………..you're doing great !   CELEBRATE ! 

        Nancy (devoted wife of 3 X Warrior Wayne )   <><

         

        • December 12, 2012 at 8:44 pm
        Snickers60
        Participant

        Way to go, BEAT THE BEAST AL !  :-))   WAY TO TO !      Wayne always enjoys your post and is talking about you.   He now has 6 months with the new name "NED" on ZEL, and pray it will continue for a long time.   Dr. B said he was one of the few (4%) complete responders AGAIN just last week.     He also told him that at the one year mark, they may take him off ZEL and SEE what happens.  That would be June 2013, so we'll see. 

        Have you found anything that helps the fatigue ?   Wayne continues to work also but is wiped out nights/weekends.   We found B-1 (benfotiadine) for the neuropathy pain and he is now sleeping and not crying through the night with those awful shooting neuropathy pains in his legs/feet.    Getting fatigue under control would be great.  Share tips if you have any….thanks.    

        You have been an inspiration to us, and we pray for you CONTINUED GOOD REPORTS FOR DECADES TO COME !

        KEEP ON KEEPING ON………..you're doing great !   CELEBRATE ! 

        Nancy (devoted wife of 3 X Warrior Wayne )   <><

         

        • December 12, 2012 at 8:44 pm
        Snickers60
        Participant

        Way to go, BEAT THE BEAST AL !  :-))   WAY TO TO !      Wayne always enjoys your post and is talking about you.   He now has 6 months with the new name "NED" on ZEL, and pray it will continue for a long time.   Dr. B said he was one of the few (4%) complete responders AGAIN just last week.     He also told him that at the one year mark, they may take him off ZEL and SEE what happens.  That would be June 2013, so we'll see. 

        Have you found anything that helps the fatigue ?   Wayne continues to work also but is wiped out nights/weekends.   We found B-1 (benfotiadine) for the neuropathy pain and he is now sleeping and not crying through the night with those awful shooting neuropathy pains in his legs/feet.    Getting fatigue under control would be great.  Share tips if you have any….thanks.    

        You have been an inspiration to us, and we pray for you CONTINUED GOOD REPORTS FOR DECADES TO COME !

        KEEP ON KEEPING ON………..you're doing great !   CELEBRATE ! 

        Nancy (devoted wife of 3 X Warrior Wayne )   <><

         

      • December 12, 2012 at 2:37 pm
      Tina D
      Participant

      Always SO great to see your posts. Wishing you a blessed Christmas and I'm so glad you have all this good news to bring in the New Year with! Thank you for being so faithful to share! Wishing you many more years of good health,,,

      Tina

      • December 12, 2012 at 2:37 pm
      Tina D
      Participant

      Always SO great to see your posts. Wishing you a blessed Christmas and I'm so glad you have all this good news to bring in the New Year with! Thank you for being so faithful to share! Wishing you many more years of good health,,,

      Tina

      • December 12, 2012 at 9:11 pm
      awillett1991
      Participant
      God Bless Al and thanks for posting. I have been on & off for almost 8 months now, including 6 weeks for Ipi and ended up doing both at the same time. Grateful to still be responding. Amy
      • December 12, 2012 at 9:11 pm
      awillett1991
      Participant
      God Bless Al and thanks for posting. I have been on & off for almost 8 months now, including 6 weeks for Ipi and ended up doing both at the same time. Grateful to still be responding. Amy
      • December 12, 2012 at 9:11 pm
      awillett1991
      Participant
      God Bless Al and thanks for posting. I have been on & off for almost 8 months now, including 6 weeks for Ipi and ended up doing both at the same time. Grateful to still be responding. Amy
      • December 13, 2012 at 12:50 am
      triciad
      Participant

      Al,

      I just came from Dr. Pavlick's office…she IS the best!  I am so happy to hear your new.  Good luck with the other health issues and you will continue to be in my prayers.  Thanks for always lifting our spirits here on the board.  People like you make everyone want to be a better person.  God bless!

      Tricia

      • December 13, 2012 at 12:50 am
      triciad
      Participant

      Al,

      I just came from Dr. Pavlick's office…she IS the best!  I am so happy to hear your new.  Good luck with the other health issues and you will continue to be in my prayers.  Thanks for always lifting our spirits here on the board.  People like you make everyone want to be a better person.  God bless!

      Tricia

      • December 13, 2012 at 12:50 am
      triciad
      Participant

      Al,

      I just came from Dr. Pavlick's office…she IS the best!  I am so happy to hear your new.  Good luck with the other health issues and you will continue to be in my prayers.  Thanks for always lifting our spirits here on the board.  People like you make everyone want to be a better person.  God bless!

      Tricia

      • December 14, 2012 at 2:22 pm
      SidneyGracie
      Participant

      Thank you for the encouragement.  My husband is in month 4 of Zelboraf.  It has been working, shrinking liver, lung and subcutaneous lesions.  Brain is stable after whole Brain Radiation.  Not feeling well now with fatigue, weakness, loss of appetite.  We are hoping it is a side effect.  He doesn't want to come off Z as it has been working so well.  Your story kicks butt on the shorter durability averages and that gives us hope.  Merry Christmas.

      • December 14, 2012 at 2:22 pm
      SidneyGracie
      Participant

      Thank you for the encouragement.  My husband is in month 4 of Zelboraf.  It has been working, shrinking liver, lung and subcutaneous lesions.  Brain is stable after whole Brain Radiation.  Not feeling well now with fatigue, weakness, loss of appetite.  We are hoping it is a side effect.  He doesn't want to come off Z as it has been working so well.  Your story kicks butt on the shorter durability averages and that gives us hope.  Merry Christmas.

      • December 14, 2012 at 2:22 pm
      SidneyGracie
      Participant

      Thank you for the encouragement.  My husband is in month 4 of Zelboraf.  It has been working, shrinking liver, lung and subcutaneous lesions.  Brain is stable after whole Brain Radiation.  Not feeling well now with fatigue, weakness, loss of appetite.  We are hoping it is a side effect.  He doesn't want to come off Z as it has been working so well.  Your story kicks butt on the shorter durability averages and that gives us hope.  Merry Christmas.

      • December 17, 2012 at 7:48 pm
      Ali
      Participant

      Thank you for the hope!!

      • December 17, 2012 at 7:48 pm
      Ali
      Participant

      Thank you for the hope!!

      • December 17, 2012 at 7:48 pm
      Ali
      Participant

      Thank you for the hope!!

        • December 18, 2012 at 12:19 am
        aldakota22
        Participant

        To all who are in this fight I pray that my story is encouragement and offers hope to so many .I beleive that no dr. should treat any of us as  clinical  statistic.We are patients not numbers.How I want so desperately all of us to be cancer free.My results will one day be the norm.The progress in beating melanoma is remarkable when compared to just a few years ago.There truly is a cure on the horizon.Beat the Beast  Al

        • December 18, 2012 at 12:19 am
        aldakota22
        Participant

        To all who are in this fight I pray that my story is encouragement and offers hope to so many .I beleive that no dr. should treat any of us as  clinical  statistic.We are patients not numbers.How I want so desperately all of us to be cancer free.My results will one day be the norm.The progress in beating melanoma is remarkable when compared to just a few years ago.There truly is a cure on the horizon.Beat the Beast  Al

        • December 18, 2012 at 12:19 am
        aldakota22
        Participant

        To all who are in this fight I pray that my story is encouragement and offers hope to so many .I beleive that no dr. should treat any of us as  clinical  statistic.We are patients not numbers.How I want so desperately all of us to be cancer free.My results will one day be the norm.The progress in beating melanoma is remarkable when compared to just a few years ago.There truly is a cure on the horizon.Beat the Beast  Al

Viewing 29 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.