Update–Good News
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Update–Good News

› Forums › General Melanoma Community › Update–Good News

  • Post
    • January 6, 2013 at 12:29 am
    NYKaren
    Participant
    Hit everyone,
    After 17 days on Zelboraf, I am doing well. I saw Dr. Wolchok this past Thursday. As soon as he walked in the room, he said “wow”!
    Since my mets are mostly on my face, it’s easy to see noticeable regression/flattening of mets. And the several scalp mets that were (for the first time in 2 yrs.) big enough to light up on PET, are all completely flat. On some, the pigment even disappeared. He said the pigment might not all disappear on my face, even if the Mel completely resolved. I can feel that the Mel in my ear has gotten much smaller and I can hear out of it. Must see the ENT to confirm/see what’s left.
    As for side effects, I’m getting numerous skin tags or small warts around eyes and just found a big one behind my knee today. Some leg pain and mild fatigue. I did start taking Benfotiamine after reading Snickers’ recommendation, who knows’ maybe that’s helping. I told them that I have to get rid of my “Yervoy mentality” that says that side-effects = response. He laughed but for those of you on ippy did say that they’re revisiting that theory.
    I asked him at what stage in past 2 years did he think I went from BRAF – to positive, and he THINKS it’s more likely it was a false negative…they might have tested healthy tissue– but really, who knows? Who cares??
    I know I might develop worse side effects but for now I’m feeling surprisingly good.

    My thyroid FNA was negative! (And yes, when they stuck the needle in twice and wiggled it around, it hurt).

    Al, I hope I’m following in your footsteps!
    Love to you all,
    Karen

Viewing 32 reply threads
  • Replies
      • January 6, 2013 at 12:51 am
      JerryfromFauq
      Participant

      Love that news Gal!!!   Whoppee !!

      • January 6, 2013 at 12:51 am
      JerryfromFauq
      Participant

      Love that news Gal!!!   Whoppee !!

      • January 6, 2013 at 12:51 am
      JerryfromFauq
      Participant

      Love that news Gal!!!   Whoppee !!

      • January 6, 2013 at 1:05 am
      awillett1991
      Participant
      Great news Karen! Thanks for sharing. I was told side effects = response for Zel and IPI both 😉 I think they always want to find something positive to give us hope 🙂 Hope is necessary for me.

      Amy

      • January 6, 2013 at 1:05 am
      awillett1991
      Participant
      Great news Karen! Thanks for sharing. I was told side effects = response for Zel and IPI both 😉 I think they always want to find something positive to give us hope 🙂 Hope is necessary for me.

      Amy

      • January 6, 2013 at 1:05 am
      awillett1991
      Participant
      Great news Karen! Thanks for sharing. I was told side effects = response for Zel and IPI both 😉 I think they always want to find something positive to give us hope 🙂 Hope is necessary for me.

      Amy

      • January 6, 2013 at 2:09 am
      bikerwife
      Participant
      Wonderful News. God Bless
      • January 6, 2013 at 2:09 am
      bikerwife
      Participant
      Wonderful News. God Bless
      • January 6, 2013 at 2:09 am
      bikerwife
      Participant
      Wonderful News. God Bless
      • January 6, 2013 at 4:05 am
      audgator
      Participant

      VERY happy to hear this, Karen.

      Dan

      • January 6, 2013 at 4:05 am
      audgator
      Participant

      VERY happy to hear this, Karen.

      Dan

        • January 6, 2013 at 5:24 am
        POW
        Participant

        Thank you for sharing this great news, Karen. I am delighted that Zelboraf is working so well for you! You go, girl!

        • January 6, 2013 at 5:24 am
        POW
        Participant

        Thank you for sharing this great news, Karen. I am delighted that Zelboraf is working so well for you! You go, girl!

        • January 6, 2013 at 5:24 am
        POW
        Participant

        Thank you for sharing this great news, Karen. I am delighted that Zelboraf is working so well for you! You go, girl!

      • January 6, 2013 at 4:05 am
      audgator
      Participant

      VERY happy to hear this, Karen.

      Dan

      • January 6, 2013 at 10:24 am
      aldakota22
      Participant

      Wow, what a great post Karen.So happy that "Z" is working so well for you.Just keep that pma (positive mind attitude) and ours prayers and I am sure you wil stay in my footprintsCould not be happier for you.Beat th Beast.   AL

      • January 6, 2013 at 10:24 am
      aldakota22
      Participant

      Wow, what a great post Karen.So happy that "Z" is working so well for you.Just keep that pma (positive mind attitude) and ours prayers and I am sure you wil stay in my footprintsCould not be happier for you.Beat th Beast.   AL

      • January 6, 2013 at 10:24 am
      aldakota22
      Participant

      Wow, what a great post Karen.So happy that "Z" is working so well for you.Just keep that pma (positive mind attitude) and ours prayers and I am sure you wil stay in my footprintsCould not be happier for you.Beat th Beast.   AL

      • January 6, 2013 at 11:07 am
      Owl
      Participant

      Dear Karen,

      that's very good news, I hope Z continues to work so well for you with little side effects. My husband would be on day 18 on Z today, but he stopped taking it on doctors advise last Friday. He has a bad and itching rash all over the body, driving him crazy, and joint pain. It has not really gotten any better during the last 2 days (off Z), he will have to talk to the doctors again tomorrow. Only good thing is that visible mets seem to have shrunk already.

      All the best for you,

      Jenny

      • January 6, 2013 at 11:07 am
      Owl
      Participant

      Dear Karen,

      that's very good news, I hope Z continues to work so well for you with little side effects. My husband would be on day 18 on Z today, but he stopped taking it on doctors advise last Friday. He has a bad and itching rash all over the body, driving him crazy, and joint pain. It has not really gotten any better during the last 2 days (off Z), he will have to talk to the doctors again tomorrow. Only good thing is that visible mets seem to have shrunk already.

      All the best for you,

      Jenny

        • January 6, 2013 at 5:50 pm
        NYKaren
        Participant
        Jenny, perhaps they can put your husband on a reduced dose and on a low dose of steroids as well. I hear that regimen works well for many people. Please let us know what happens at the doctor!
        All the best,
        Karen
        • January 6, 2013 at 5:50 pm
        NYKaren
        Participant
        Jenny, perhaps they can put your husband on a reduced dose and on a low dose of steroids as well. I hear that regimen works well for many people. Please let us know what happens at the doctor!
        All the best,
        Karen
        • January 6, 2013 at 5:50 pm
        NYKaren
        Participant
        Jenny, perhaps they can put your husband on a reduced dose and on a low dose of steroids as well. I hear that regimen works well for many people. Please let us know what happens at the doctor!
        All the best,
        Karen
      • January 6, 2013 at 11:07 am
      Owl
      Participant

      Dear Karen,

      that's very good news, I hope Z continues to work so well for you with little side effects. My husband would be on day 18 on Z today, but he stopped taking it on doctors advise last Friday. He has a bad and itching rash all over the body, driving him crazy, and joint pain. It has not really gotten any better during the last 2 days (off Z), he will have to talk to the doctors again tomorrow. Only good thing is that visible mets seem to have shrunk already.

      All the best for you,

      Jenny

      • January 6, 2013 at 12:06 pm
      triciad
      Participant

      Sending prayers for continued success and less side effects! Let's hope 2013 is a magical year for all!!!!

      Tricia

      • January 6, 2013 at 12:06 pm
      triciad
      Participant

      Sending prayers for continued success and less side effects! Let's hope 2013 is a magical year for all!!!!

      Tricia

      • January 6, 2013 at 12:06 pm
      triciad
      Participant

      Sending prayers for continued success and less side effects! Let's hope 2013 is a magical year for all!!!!

      Tricia

      • January 6, 2013 at 3:01 pm
      Richard_K
      Participant

       

      Karen,

      Congratulations! I can’t think of a better way to start the New Year. I hope you turn out be a long term responder with minimum side effects.  I used to joke about my skin tags that were always being taken off if they bothered me calling it part of my weight reduction program.

      Dick

      • January 6, 2013 at 3:01 pm
      Richard_K
      Participant

       

      Karen,

      Congratulations! I can’t think of a better way to start the New Year. I hope you turn out be a long term responder with minimum side effects.  I used to joke about my skin tags that were always being taken off if they bothered me calling it part of my weight reduction program.

      Dick

        • January 6, 2013 at 3:36 pm
        Snickers60
        Participant

        Whooo hoooo, great report Karen !   So glad to hear Zel is working for you. 

        Also glad to hear you are trying Benfotiamine – it's good for almost everything and has been a miracle for my Wayne.  Has helped my NERVE ENDING pain soooo much too.    It's called the Anti-aging vitamin, so who knows….we may look much younger soon too.   :-)))) 

        What a great way to start the new year…..way to go……KEEP IT UP and KEEP THE FAITH ! 

        Nancy and Wayne the Warrior  

        • January 6, 2013 at 3:36 pm
        Snickers60
        Participant

        Whooo hoooo, great report Karen !   So glad to hear Zel is working for you. 

        Also glad to hear you are trying Benfotiamine – it's good for almost everything and has been a miracle for my Wayne.  Has helped my NERVE ENDING pain soooo much too.    It's called the Anti-aging vitamin, so who knows….we may look much younger soon too.   :-)))) 

        What a great way to start the new year…..way to go……KEEP IT UP and KEEP THE FAITH ! 

        Nancy and Wayne the Warrior  

        • January 6, 2013 at 3:36 pm
        Snickers60
        Participant

        Whooo hoooo, great report Karen !   So glad to hear Zel is working for you. 

        Also glad to hear you are trying Benfotiamine – it's good for almost everything and has been a miracle for my Wayne.  Has helped my NERVE ENDING pain soooo much too.    It's called the Anti-aging vitamin, so who knows….we may look much younger soon too.   :-)))) 

        What a great way to start the new year…..way to go……KEEP IT UP and KEEP THE FAITH ! 

        Nancy and Wayne the Warrior  

        • January 6, 2013 at 5:53 pm
        NYKaren
        Participant
        Nancy, thank you!
        What dose of Benfotiamine are you guys on?
        I bought a bottle of 250 mg and take one in the a.m.
        Looking forward to the looking younger part!
        Hugs,
        Karen
        • January 6, 2013 at 5:53 pm
        NYKaren
        Participant
        Nancy, thank you!
        What dose of Benfotiamine are you guys on?
        I bought a bottle of 250 mg and take one in the a.m.
        Looking forward to the looking younger part!
        Hugs,
        Karen
        • January 6, 2013 at 5:53 pm
        NYKaren
        Participant
        Nancy, thank you!
        What dose of Benfotiamine are you guys on?
        I bought a bottle of 250 mg and take one in the a.m.
        Looking forward to the looking younger part!
        Hugs,
        Karen
        • January 6, 2013 at 9:23 pm
        Snickers60
        Participant

        I do declare – we look 5 years younger already !!!  LOLOLOL     I really do think my skin looks better and so does

        Wayne's.   I'm always working on something to make him feel better about himself and his dry skin has been a problem.   Think we got that fixed now with HOPE IN A JAR moisturizer.   May be that.  LOLOL 

        We are actually taking 150 mg capsules.   I only take one a day because I'm the kind of person that can't take much at all.   Wayne has been on only one a day also, but after you wrote, we were taking about taking him up one or two more capsules.    I think he needs, at least, one more with this tingling and numbness and neuropathy.   We were shocked how that one little vitamin helped his pain from crying through the night to COMPLETE RELIEF.    Amazing vitamin I'd say. 

        You can take up to 600 mg, Karen, according to what I have read.   That's why I think Wayne should take one more, if not two since he's still having some tingling and numbness.   We felt blessed to find it when we did because he had already gotten his Neurotin filled and decided to try this first.   Any drugs you don't have to take the better is what they keep telling us and we all know that to be true.  

        We think it also gives us a little more energy.   🙂

        SO…….post a pic when you are 5 years younger looking, and we'll start a MELANOMA YOUNGER LOOKING CLUB !   I hope you appreciate my humor.   I cannot help myself……..:-))) 

        PRAY YOU ARE DOING WELL AND BEATING THE BEAST !!!

        Nancy and (My Dear Warrior WAYNE) 

        • January 6, 2013 at 9:53 pm
        NYKaren
        Participant
        Nancy,
        Thanks for replying. I’ll keep the dosaging in mind.

        Not only do I appreciate your humor, I love it!
        I strongly believe in laughter as good medicine, and some days we really need it.

        BTW, Hope in a Jar did nothing for me, LOL .

        My best to Wayne.
        Karen

        • January 7, 2013 at 10:29 pm
        awillett1991
        Participant
        I was wondering if you all have checked w your dr about this supplement? Did they say it was ok w Z? My dr wants to know everything I’m on.
        • January 7, 2013 at 10:29 pm
        awillett1991
        Participant
        I was wondering if you all have checked w your dr about this supplement? Did they say it was ok w Z? My dr wants to know everything I’m on.
        • January 7, 2013 at 10:39 pm
        NYKaren
        Participant
        Yes, I have to update my med/supplement list at every single visit, and I specifically brought it the nurse’s attention in December right when I first heard about it. I take a lot of vitamin D too–I tell them everything–even called to ask if I can have an occasional glass of wine!
        Take care,
        Karen
        • January 7, 2013 at 10:39 pm
        NYKaren
        Participant
        Yes, I have to update my med/supplement list at every single visit, and I specifically brought it the nurse’s attention in December right when I first heard about it. I take a lot of vitamin D too–I tell them everything–even called to ask if I can have an occasional glass of wine!
        Take care,
        Karen
        • January 7, 2013 at 10:39 pm
        NYKaren
        Participant
        Yes, I have to update my med/supplement list at every single visit, and I specifically brought it the nurse’s attention in December right when I first heard about it. I take a lot of vitamin D too–I tell them everything–even called to ask if I can have an occasional glass of wine!
        Take care,
        Karen
        • January 7, 2013 at 10:29 pm
        awillett1991
        Participant
        I was wondering if you all have checked w your dr about this supplement? Did they say it was ok w Z? My dr wants to know everything I’m on.
        • January 6, 2013 at 9:53 pm
        NYKaren
        Participant
        Nancy,
        Thanks for replying. I’ll keep the dosaging in mind.

        Not only do I appreciate your humor, I love it!
        I strongly believe in laughter as good medicine, and some days we really need it.

        BTW, Hope in a Jar did nothing for me, LOL .

        My best to Wayne.
        Karen

        • January 6, 2013 at 9:53 pm
        NYKaren
        Participant
        Nancy,
        Thanks for replying. I’ll keep the dosaging in mind.

        Not only do I appreciate your humor, I love it!
        I strongly believe in laughter as good medicine, and some days we really need it.

        BTW, Hope in a Jar did nothing for me, LOL .

        My best to Wayne.
        Karen

        • January 6, 2013 at 9:23 pm
        Snickers60
        Participant

        I do declare – we look 5 years younger already !!!  LOLOLOL     I really do think my skin looks better and so does

        Wayne's.   I'm always working on something to make him feel better about himself and his dry skin has been a problem.   Think we got that fixed now with HOPE IN A JAR moisturizer.   May be that.  LOLOL 

        We are actually taking 150 mg capsules.   I only take one a day because I'm the kind of person that can't take much at all.   Wayne has been on only one a day also, but after you wrote, we were taking about taking him up one or two more capsules.    I think he needs, at least, one more with this tingling and numbness and neuropathy.   We were shocked how that one little vitamin helped his pain from crying through the night to COMPLETE RELIEF.    Amazing vitamin I'd say. 

        You can take up to 600 mg, Karen, according to what I have read.   That's why I think Wayne should take one more, if not two since he's still having some tingling and numbness.   We felt blessed to find it when we did because he had already gotten his Neurotin filled and decided to try this first.   Any drugs you don't have to take the better is what they keep telling us and we all know that to be true.  

        We think it also gives us a little more energy.   🙂

        SO…….post a pic when you are 5 years younger looking, and we'll start a MELANOMA YOUNGER LOOKING CLUB !   I hope you appreciate my humor.   I cannot help myself……..:-))) 

        PRAY YOU ARE DOING WELL AND BEATING THE BEAST !!!

        Nancy and (My Dear Warrior WAYNE) 

        • January 6, 2013 at 9:23 pm
        Snickers60
        Participant

        I do declare – we look 5 years younger already !!!  LOLOLOL     I really do think my skin looks better and so does

        Wayne's.   I'm always working on something to make him feel better about himself and his dry skin has been a problem.   Think we got that fixed now with HOPE IN A JAR moisturizer.   May be that.  LOLOL 

        We are actually taking 150 mg capsules.   I only take one a day because I'm the kind of person that can't take much at all.   Wayne has been on only one a day also, but after you wrote, we were taking about taking him up one or two more capsules.    I think he needs, at least, one more with this tingling and numbness and neuropathy.   We were shocked how that one little vitamin helped his pain from crying through the night to COMPLETE RELIEF.    Amazing vitamin I'd say. 

        You can take up to 600 mg, Karen, according to what I have read.   That's why I think Wayne should take one more, if not two since he's still having some tingling and numbness.   We felt blessed to find it when we did because he had already gotten his Neurotin filled and decided to try this first.   Any drugs you don't have to take the better is what they keep telling us and we all know that to be true.  

        We think it also gives us a little more energy.   🙂

        SO…….post a pic when you are 5 years younger looking, and we'll start a MELANOMA YOUNGER LOOKING CLUB !   I hope you appreciate my humor.   I cannot help myself……..:-))) 

        PRAY YOU ARE DOING WELL AND BEATING THE BEAST !!!

        Nancy and (My Dear Warrior WAYNE) 

      • January 6, 2013 at 3:01 pm
      Richard_K
      Participant

       

      Karen,

      Congratulations! I can’t think of a better way to start the New Year. I hope you turn out be a long term responder with minimum side effects.  I used to joke about my skin tags that were always being taken off if they bothered me calling it part of my weight reduction program.

      Dick

      • January 7, 2013 at 5:45 am
      DeniseK
      Participant
      Awesome! ! So glad to hear your responding!! Love love love it! ! I’m starting my Z tomorrow and am hoping for quick results too! Not only that I’m hoping we are going to be long term responders and have many many years ahead of us with our families!!! I can’t wipe this huge smile off my face for the joy I feel for you, also Nancy’s fountain of youth and Dicks weight loss regimen!! Too funny!! 🙂
      • January 7, 2013 at 5:45 am
      DeniseK
      Participant
      Awesome! ! So glad to hear your responding!! Love love love it! ! I’m starting my Z tomorrow and am hoping for quick results too! Not only that I’m hoping we are going to be long term responders and have many many years ahead of us with our families!!! I can’t wipe this huge smile off my face for the joy I feel for you, also Nancy’s fountain of youth and Dicks weight loss regimen!! Too funny!! 🙂
        • January 7, 2013 at 10:46 pm
        NYKaren
        Participant
        Denise, I wish you much success on Zel. I’m only 2 weeks ahead of you, so we can be Zel buddies.
        What a beautiful post–thank you.
        Karen
        Thank you to everyone for your encouragement–May 2013 be the year we beat the beast!
        • January 7, 2013 at 10:46 pm
        NYKaren
        Participant
        Denise, I wish you much success on Zel. I’m only 2 weeks ahead of you, so we can be Zel buddies.
        What a beautiful post–thank you.
        Karen
        Thank you to everyone for your encouragement–May 2013 be the year we beat the beast!
        • January 7, 2013 at 10:46 pm
        NYKaren
        Participant
        Denise, I wish you much success on Zel. I’m only 2 weeks ahead of you, so we can be Zel buddies.
        What a beautiful post–thank you.
        Karen
        Thank you to everyone for your encouragement–May 2013 be the year we beat the beast!
      • January 7, 2013 at 5:45 am
      DeniseK
      Participant
      Awesome! ! So glad to hear your responding!! Love love love it! ! I’m starting my Z tomorrow and am hoping for quick results too! Not only that I’m hoping we are going to be long term responders and have many many years ahead of us with our families!!! I can’t wipe this huge smile off my face for the joy I feel for you, also Nancy’s fountain of youth and Dicks weight loss regimen!! Too funny!! 🙂
      • January 8, 2013 at 9:20 pm
      Swanee
      Participant

      Hi Karen,

      Always good to read these good news posts,  like yours!  I am so glad to read another success story with the Z…..it is helping so many!  Interesting that your status changed to positive with BRAF – sounds like something that needs to be retested now and then for some of us!

      You've had some real twists and turns with this… and I love your attitude   "WHO KNOWS, WHO CARES!"  that really made me smile!

      Wishing you continued success with the Z.. treatment and soon an NED status! 

      Swanee

      • January 8, 2013 at 9:20 pm
      Swanee
      Participant

      Hi Karen,

      Always good to read these good news posts,  like yours!  I am so glad to read another success story with the Z…..it is helping so many!  Interesting that your status changed to positive with BRAF – sounds like something that needs to be retested now and then for some of us!

      You've had some real twists and turns with this… and I love your attitude   "WHO KNOWS, WHO CARES!"  that really made me smile!

      Wishing you continued success with the Z.. treatment and soon an NED status! 

      Swanee

      • January 8, 2013 at 9:20 pm
      Swanee
      Participant

      Hi Karen,

      Always good to read these good news posts,  like yours!  I am so glad to read another success story with the Z…..it is helping so many!  Interesting that your status changed to positive with BRAF – sounds like something that needs to be retested now and then for some of us!

      You've had some real twists and turns with this… and I love your attitude   "WHO KNOWS, WHO CARES!"  that really made me smile!

      Wishing you continued success with the Z.. treatment and soon an NED status! 

      Swanee

      • January 8, 2013 at 11:37 pm
      Tina D
      Participant

      Awesome, exciting news! Rejoicing with you!

      Tina

      • January 8, 2013 at 11:37 pm
      Tina D
      Participant

      Awesome, exciting news! Rejoicing with you!

      Tina

      • January 8, 2013 at 11:37 pm
      Tina D
      Participant

      Awesome, exciting news! Rejoicing with you!

      Tina

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