A Zelboraf Update
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A Zelboraf Update

› Forums › General Melanoma Community › A Zelboraf Update

  • Post
    • June 21, 2012 at 1:21 pm
    Richard_K
    Participant

     

    Hi everyone,

    I had scans this past Monday and yesterday met with my doctor for the results – NO CHANGE from previous scans.  It’s now been 28 months since I started on Zelboraf and 19 months since the PET scan stopped lighting up.

    I get a through physical exam including blood work and EKGs (three of them).  My doctor and her staff consider me a “boring” patient.  It’s great to be boring!

    I got another six week supply of pills with next scheduled scans for July 30th.

    Dick

     

    Hi everyone,

    I had scans this past Monday and yesterday met with my doctor for the results – NO CHANGE from previous scans.  It’s now been 28 months since I started on Zelboraf and 19 months since the PET scan stopped lighting up.

    I get a through physical exam including blood work and EKGs (three of them).  My doctor and her staff consider me a “boring” patient.  It’s great to be boring!

    I got another six week supply of pills with next scheduled scans for July 30th.

    Dick

Viewing 44 reply threads
  • Replies
      • June 21, 2012 at 2:37 pm
      aldakota22
      Participant

      Great news Dick.Like you I am Z  but only for 9 1/2 months.Love the stuff.Thank God it works so good Say prayers every night that it continues for all of us on it.Like you say boring is good. Al the best.  Al

      • June 21, 2012 at 2:37 pm
      aldakota22
      Participant

      Great news Dick.Like you I am Z  but only for 9 1/2 months.Love the stuff.Thank God it works so good Say prayers every night that it continues for all of us on it.Like you say boring is good. Al the best.  Al

      • June 21, 2012 at 2:37 pm
      aldakota22
      Participant

      Great news Dick.Like you I am Z  but only for 9 1/2 months.Love the stuff.Thank God it works so good Say prayers every night that it continues for all of us on it.Like you say boring is good. Al the best.  Al

        • June 21, 2012 at 3:11 pm
        Erinmay22
        Participant

        That's great!  I too hope Z works like that for me!  I was a boring patient for a little over a year until in May when Melanoma showed it's ugly head in my small intestine (at least they think it's Melanoma).  So started Z May 30th.  Took it on full dose for 10 days until I got a chin to toes rash.  Stopped for a few days and back on it at 3 pills 2x's per day.  Will have my first set of scans mid July!  Let's hope it's doing it's thing!  Horrible joint pain the last few days 🙁  but if it's working I'll deal with the joint pain.

        Thanks for sharing the good news!

        Erin

        • June 21, 2012 at 3:11 pm
        Erinmay22
        Participant

        That's great!  I too hope Z works like that for me!  I was a boring patient for a little over a year until in May when Melanoma showed it's ugly head in my small intestine (at least they think it's Melanoma).  So started Z May 30th.  Took it on full dose for 10 days until I got a chin to toes rash.  Stopped for a few days and back on it at 3 pills 2x's per day.  Will have my first set of scans mid July!  Let's hope it's doing it's thing!  Horrible joint pain the last few days 🙁  but if it's working I'll deal with the joint pain.

        Thanks for sharing the good news!

        Erin

        • June 21, 2012 at 3:11 pm
        Erinmay22
        Participant

        That's great!  I too hope Z works like that for me!  I was a boring patient for a little over a year until in May when Melanoma showed it's ugly head in my small intestine (at least they think it's Melanoma).  So started Z May 30th.  Took it on full dose for 10 days until I got a chin to toes rash.  Stopped for a few days and back on it at 3 pills 2x's per day.  Will have my first set of scans mid July!  Let's hope it's doing it's thing!  Horrible joint pain the last few days 🙁  but if it's working I'll deal with the joint pain.

        Thanks for sharing the good news!

        Erin

      • June 21, 2012 at 4:11 pm
      H555
      Participant

      Congratulations Dick. you are evidence of my hope. I've been on Zelboraf since April 9 and 90+% of my lung mets are gone, those that remain are half the size they were when I sstarted taking it. let's hope the researchers and pharma companies develop or refine MEK because there's a growing number of melanoma pts getting treated with Zelboraf.

      Ron

      • June 21, 2012 at 4:11 pm
      H555
      Participant

      Congratulations Dick. you are evidence of my hope. I've been on Zelboraf since April 9 and 90+% of my lung mets are gone, those that remain are half the size they were when I sstarted taking it. let's hope the researchers and pharma companies develop or refine MEK because there's a growing number of melanoma pts getting treated with Zelboraf.

      Ron

      • June 21, 2012 at 4:11 pm
      H555
      Participant

      Congratulations Dick. you are evidence of my hope. I've been on Zelboraf since April 9 and 90+% of my lung mets are gone, those that remain are half the size they were when I sstarted taking it. let's hope the researchers and pharma companies develop or refine MEK because there's a growing number of melanoma pts getting treated with Zelboraf.

      Ron

      • June 21, 2012 at 9:28 pm
      lhaley
      Participant

      Great news!!!  Since you have been NED for so long have they ever discussed you taking a break from it? 

      Linda

      • June 21, 2012 at 9:28 pm
      lhaley
      Participant

      Great news!!!  Since you have been NED for so long have they ever discussed you taking a break from it? 

      Linda

      • June 21, 2012 at 9:28 pm
      lhaley
      Participant

      Great news!!!  Since you have been NED for so long have they ever discussed you taking a break from it? 

      Linda

        • June 22, 2012 at 12:35 pm
        Richard_K
        Participant

        Linda

        There have been no discussions with me about stopping Zelboraf.  It is a great hope of mine that by still being in the trial, information will be found about my response that will help others.

        Dick

        • June 22, 2012 at 12:35 pm
        Richard_K
        Participant

        Linda

        There have been no discussions with me about stopping Zelboraf.  It is a great hope of mine that by still being in the trial, information will be found about my response that will help others.

        Dick

        • June 22, 2012 at 12:35 pm
        Richard_K
        Participant

        Linda

        There have been no discussions with me about stopping Zelboraf.  It is a great hope of mine that by still being in the trial, information will be found about my response that will help others.

        Dick

      • June 21, 2012 at 10:22 pm
      Eileen L
      Participant
      Wonderful news! I am a Zelboraf newbie, just over five weeks now. Scans June 28! Thx for sharing your encouraging news.
      Eileen L
      • June 21, 2012 at 10:22 pm
      Eileen L
      Participant
      Wonderful news! I am a Zelboraf newbie, just over five weeks now. Scans June 28! Thx for sharing your encouraging news.
      Eileen L
      • June 21, 2012 at 10:22 pm
      Eileen L
      Participant
      Wonderful news! I am a Zelboraf newbie, just over five weeks now. Scans June 28! Thx for sharing your encouraging news.
      Eileen L
      • June 21, 2012 at 11:17 pm
      triciad
      Participant

      Congratulations!  Thanks for posting such uplifting news.  Here's to many more decades of being "boring"!

      • June 21, 2012 at 11:17 pm
      triciad
      Participant

      Congratulations!  Thanks for posting such uplifting news.  Here's to many more decades of being "boring"!

      • June 21, 2012 at 11:17 pm
      triciad
      Participant

      Congratulations!  Thanks for posting such uplifting news.  Here's to many more decades of being "boring"!

      • June 22, 2012 at 2:51 am
      Bruce Davis
      Participant
      Thanks for sharing this encouraging news. I’ve been on zel for 9 months….think this medicine is the only reason I’m still around… Nodules in the lungs have reduced to 1/10 the size and stayed that way for the last 5 months. Wish you many more clear scans!

      Bruce

      • June 22, 2012 at 2:51 am
      Bruce Davis
      Participant
      Thanks for sharing this encouraging news. I’ve been on zel for 9 months….think this medicine is the only reason I’m still around… Nodules in the lungs have reduced to 1/10 the size and stayed that way for the last 5 months. Wish you many more clear scans!

      Bruce

      • June 22, 2012 at 2:51 am
      Bruce Davis
      Participant
      Thanks for sharing this encouraging news. I’ve been on zel for 9 months….think this medicine is the only reason I’m still around… Nodules in the lungs have reduced to 1/10 the size and stayed that way for the last 5 months. Wish you many more clear scans!

      Bruce

      • June 22, 2012 at 5:20 am
      hopefortomorrow
      Participant

      You are a walking miracle.  An inspiration to us all.  Be thankful for every day you have and keep being "boring".  God bless! 

      • June 22, 2012 at 5:20 am
      hopefortomorrow
      Participant

      You are a walking miracle.  An inspiration to us all.  Be thankful for every day you have and keep being "boring".  God bless! 

      • June 22, 2012 at 5:20 am
      hopefortomorrow
      Participant

      You are a walking miracle.  An inspiration to us all.  Be thankful for every day you have and keep being "boring".  God bless! 

      • June 22, 2012 at 12:38 pm
      Richard_K
      Participant

      Thank you all for the kind comments.

      Dick

      • June 22, 2012 at 12:38 pm
      Richard_K
      Participant

      Thank you all for the kind comments.

      Dick

      • June 22, 2012 at 12:38 pm
      Richard_K
      Participant

      Thank you all for the kind comments.

      Dick

      • June 22, 2012 at 10:48 pm
      hope4cure1
      Participant

      Yessssss! How wonderfully boring you are 🙂

      Hope

      • June 22, 2012 at 10:48 pm
      hope4cure1
      Participant

      Yessssss! How wonderfully boring you are 🙂

      Hope

      • June 22, 2012 at 10:48 pm
      hope4cure1
      Participant

      Yessssss! How wonderfully boring you are 🙂

      Hope

      • July 6, 2012 at 10:42 pm
      Retired41505
      Participant

      Dick, so happy to hear the good results. July 16 my son in law will have his first MRI after 6 weeks full dose of Z for brain mets. We're staying positive and praying.

      np

      • July 6, 2012 at 10:42 pm
      Retired41505
      Participant

      Dick, so happy to hear the good results. July 16 my son in law will have his first MRI after 6 weeks full dose of Z for brain mets. We're staying positive and praying.

      np

      • July 6, 2012 at 10:42 pm
      Retired41505
      Participant

      Dick, so happy to hear the good results. July 16 my son in law will have his first MRI after 6 weeks full dose of Z for brain mets. We're staying positive and praying.

      np

      • July 6, 2012 at 10:43 pm
      Retired41505
      Participant

      Dick, so happy to hear the good results. July 16 my son in law will have his first MRI after 6 weeks full dose of Z for brain mets. We're staying positive and praying.

      np

      • July 6, 2012 at 10:43 pm
      Retired41505
      Participant

      Dick, so happy to hear the good results. July 16 my son in law will have his first MRI after 6 weeks full dose of Z for brain mets. We're staying positive and praying.

      np

      • July 6, 2012 at 10:43 pm
      Retired41505
      Participant

      Dick, so happy to hear the good results. July 16 my son in law will have his first MRI after 6 weeks full dose of Z for brain mets. We're staying positive and praying.

      np

      • July 18, 2012 at 10:35 pm
      Retired41505
      Participant

      My son in law is in his 7th week on Z. He just had his first MRI for brain mets.  .  .more then 14 tumors; largest the size of a golf ball. FABULOUS news!!! The is a significant reduction in the disease and ALL tumors are shrinking. Next MRI in 2-3 months. We're thrilled.

      So hang in there everyone!! This stuff works

      • July 18, 2012 at 10:35 pm
      Retired41505
      Participant

      My son in law is in his 7th week on Z. He just had his first MRI for brain mets.  .  .more then 14 tumors; largest the size of a golf ball. FABULOUS news!!! The is a significant reduction in the disease and ALL tumors are shrinking. Next MRI in 2-3 months. We're thrilled.

      So hang in there everyone!! This stuff works

        • July 18, 2012 at 10:53 pm
        Richard_K
        Participant

        Thanks for the update – that is great news to share.

        Dick

        • July 18, 2012 at 10:53 pm
        Richard_K
        Participant

        Thanks for the update – that is great news to share.

        Dick

        • July 18, 2012 at 10:53 pm
        Richard_K
        Participant

        Thanks for the update – that is great news to share.

        Dick

      • July 18, 2012 at 10:35 pm
      Retired41505
      Participant

      My son in law is in his 7th week on Z. He just had his first MRI for brain mets.  .  .more then 14 tumors; largest the size of a golf ball. FABULOUS news!!! The is a significant reduction in the disease and ALL tumors are shrinking. Next MRI in 2-3 months. We're thrilled.

      So hang in there everyone!! This stuff works

      • August 2, 2012 at 11:08 pm
      Retired41505
      Participant

      Did you or anyone have liver function problems? And if so, what was the treatment? Going off Z for a bit which of course is frightening. Can anyone please provide some encouragement? Thanks

      • August 2, 2012 at 11:08 pm
      Retired41505
      Participant

      Did you or anyone have liver function problems? And if so, what was the treatment? Going off Z for a bit which of course is frightening. Can anyone please provide some encouragement? Thanks

      • August 2, 2012 at 11:08 pm
      Retired41505
      Participant

      Did you or anyone have liver function problems? And if so, what was the treatment? Going off Z for a bit which of course is frightening. Can anyone please provide some encouragement? Thanks

        • August 3, 2012 at 3:55 pm
        Richard_K
        Participant

         

        Neither my Oncologist nor PCP has ever mentioned any concerns about my liver.

        Dick

        • August 3, 2012 at 3:55 pm
        Richard_K
        Participant

         

        Neither my Oncologist nor PCP has ever mentioned any concerns about my liver.

        Dick

        • August 3, 2012 at 3:55 pm
        Richard_K
        Participant

         

        Neither my Oncologist nor PCP has ever mentioned any concerns about my liver.

        Dick

      • August 3, 2012 at 6:06 pm
      Retired41505
      Participant

      Thanks for the reply Dick. CT scan today to see what's going on with the liver. Hoping just a break from Z for a fews days will get the liver enzymes back down. Glad to hear you never had problems.

      • August 3, 2012 at 6:06 pm
      Retired41505
      Participant

      Thanks for the reply Dick. CT scan today to see what's going on with the liver. Hoping just a break from Z for a fews days will get the liver enzymes back down. Glad to hear you never had problems.

      • August 3, 2012 at 6:06 pm
      Retired41505
      Participant

      Thanks for the reply Dick. CT scan today to see what's going on with the liver. Hoping just a break from Z for a fews days will get the liver enzymes back down. Glad to hear you never had problems.

      • August 12, 2012 at 3:19 pm
      Sonhelpingdad
      Participant
      Hi Dick,
      It’s inspiring reading your posts.
      Perhaps you can help me with some advice for my father in law. He’s experiencing joint pain and doesn’t know if he should ‘push through it’ and keep trying to exercise, or rest/do nothing. Any tips?
      (i’ve put his details in my profile).

      Thanks for any help!

        • August 13, 2012 at 3:39 pm
        Richard_K
        Participant

         

        Very sorry to hear about your father-in-law.  My joint pain was/ is limited to my knees but it is hard for me to distinguish between Zelboraf side effect and what is probably some arthritis.  I did however have very painful feet, about five months into treatment.  For that I took it easy and bought better fitting shoes; after about a month pain subsided and today it is only an annoyance or mildly painful if I’ve been walking on uneven terrain a lot.

        Dick

        • August 14, 2012 at 5:04 pm
        Sonhelpingdad
        Participant
        Thanks for the swift response Dick.
        It seems some patients use steroids to help at the start of their Zeldoraf treatment. He’ll check with his onco.
        He’s only just started Zeldoraf and has yet to have a check-up to see if it is working. He’s very anxious as this treatment is his last hope. I think he’d find it helpful to be on forums such as this one, sharing with people who are living with the same hopes and fears… But he’s terrified of reading facts that he’s not ready to know. He was only diagnosed a couple of months back and it has been a dark rollercoaster since the . How can i (softly) encourage him to get online and make contact with people?

        Kyle

        • August 14, 2012 at 5:04 pm
        Sonhelpingdad
        Participant
        Thanks for the swift response Dick.
        It seems some patients use steroids to help at the start of their Zeldoraf treatment. He’ll check with his onco.
        He’s only just started Zeldoraf and has yet to have a check-up to see if it is working. He’s very anxious as this treatment is his last hope. I think he’d find it helpful to be on forums such as this one, sharing with people who are living with the same hopes and fears… But he’s terrified of reading facts that he’s not ready to know. He was only diagnosed a couple of months back and it has been a dark rollercoaster since the . How can i (softly) encourage him to get online and make contact with people?

        Kyle

        • August 14, 2012 at 5:04 pm
        Sonhelpingdad
        Participant
        Thanks for the swift response Dick.
        It seems some patients use steroids to help at the start of their Zeldoraf treatment. He’ll check with his onco.
        He’s only just started Zeldoraf and has yet to have a check-up to see if it is working. He’s very anxious as this treatment is his last hope. I think he’d find it helpful to be on forums such as this one, sharing with people who are living with the same hopes and fears… But he’s terrified of reading facts that he’s not ready to know. He was only diagnosed a couple of months back and it has been a dark rollercoaster since the . How can i (softly) encourage him to get online and make contact with people?

        Kyle

        • August 14, 2012 at 5:39 pm
        Richard_K
        Participant

         

        Kyle

        I am not surprised about his reluctance to jump into a forum like this one; the information can be overwhelming but can be very supporting.  Explore other parts of this site as there are a lot of resources including a Phone Buddy Program.  There are also a number of other informative sites.  One such site is http://www.facesofskincancer.org  Here you can find a number of information links and stories people have posted with their cancer stories.

        Getting back to the MIF forum, there are several people posting with quite long term Zelboraf responses.  While not on Zelboraf, there is also one cantankerous (meant in the kindest of terms) individual who hasn’t posted lately but did so yesterday, Charlie S who has been dealing with melanoma for some 25 years.

        Dick

        • September 4, 2012 at 2:04 am
        kath17
        Participant

        Dick,

        Did you ever have the rash associated with Z? If so, how long did it last? The fever and the rash are very irritating both physically and mentally. My husband started Z ten days ago and the rash began at day 9. Any thoughts or suggestions?

        Thank you….Kath

        • September 4, 2012 at 1:14 pm
        Richard_K
        Participant

         

        Kath

        So sorry you had to come here for information, but I hope things will work out for you and your husband.

        I am a bit of an anomaly as my results and side effects have not been typical; yesterday marked 2 ½ years on Zelboraf for me.  I did develop a rash very quickly on but it never manifested itself into fever.  I did experience dryness and itching.  I used several over the counter moisturizing creams that helped with the dryness and once the dryness got better, the itching diminished.  The dryness lasted some 2-3 months but I still have some visible rash on arms and thighs.

        Hope this helps.

        Dick

        • September 4, 2012 at 1:14 pm
        Richard_K
        Participant

         

        Kath

        So sorry you had to come here for information, but I hope things will work out for you and your husband.

        I am a bit of an anomaly as my results and side effects have not been typical; yesterday marked 2 ½ years on Zelboraf for me.  I did develop a rash very quickly on but it never manifested itself into fever.  I did experience dryness and itching.  I used several over the counter moisturizing creams that helped with the dryness and once the dryness got better, the itching diminished.  The dryness lasted some 2-3 months but I still have some visible rash on arms and thighs.

        Hope this helps.

        Dick

        • September 4, 2012 at 1:14 pm
        Richard_K
        Participant

         

        Kath

        So sorry you had to come here for information, but I hope things will work out for you and your husband.

        I am a bit of an anomaly as my results and side effects have not been typical; yesterday marked 2 ½ years on Zelboraf for me.  I did develop a rash very quickly on but it never manifested itself into fever.  I did experience dryness and itching.  I used several over the counter moisturizing creams that helped with the dryness and once the dryness got better, the itching diminished.  The dryness lasted some 2-3 months but I still have some visible rash on arms and thighs.

        Hope this helps.

        Dick

        • September 4, 2012 at 2:04 am
        kath17
        Participant

        Dick,

        Did you ever have the rash associated with Z? If so, how long did it last? The fever and the rash are very irritating both physically and mentally. My husband started Z ten days ago and the rash began at day 9. Any thoughts or suggestions?

        Thank you….Kath

        • September 4, 2012 at 2:04 am
        kath17
        Participant

        Dick,

        Did you ever have the rash associated with Z? If so, how long did it last? The fever and the rash are very irritating both physically and mentally. My husband started Z ten days ago and the rash began at day 9. Any thoughts or suggestions?

        Thank you….Kath

        • August 14, 2012 at 5:39 pm
        Richard_K
        Participant

         

        Kyle

        I am not surprised about his reluctance to jump into a forum like this one; the information can be overwhelming but can be very supporting.  Explore other parts of this site as there are a lot of resources including a Phone Buddy Program.  There are also a number of other informative sites.  One such site is http://www.facesofskincancer.org  Here you can find a number of information links and stories people have posted with their cancer stories.

        Getting back to the MIF forum, there are several people posting with quite long term Zelboraf responses.  While not on Zelboraf, there is also one cantankerous (meant in the kindest of terms) individual who hasn’t posted lately but did so yesterday, Charlie S who has been dealing with melanoma for some 25 years.

        Dick

        • August 14, 2012 at 5:39 pm
        Richard_K
        Participant

         

        Kyle

        I am not surprised about his reluctance to jump into a forum like this one; the information can be overwhelming but can be very supporting.  Explore other parts of this site as there are a lot of resources including a Phone Buddy Program.  There are also a number of other informative sites.  One such site is http://www.facesofskincancer.org  Here you can find a number of information links and stories people have posted with their cancer stories.

        Getting back to the MIF forum, there are several people posting with quite long term Zelboraf responses.  While not on Zelboraf, there is also one cantankerous (meant in the kindest of terms) individual who hasn’t posted lately but did so yesterday, Charlie S who has been dealing with melanoma for some 25 years.

        Dick

        • August 13, 2012 at 3:39 pm
        Richard_K
        Participant

         

        Very sorry to hear about your father-in-law.  My joint pain was/ is limited to my knees but it is hard for me to distinguish between Zelboraf side effect and what is probably some arthritis.  I did however have very painful feet, about five months into treatment.  For that I took it easy and bought better fitting shoes; after about a month pain subsided and today it is only an annoyance or mildly painful if I’ve been walking on uneven terrain a lot.

        Dick

        • August 13, 2012 at 3:39 pm
        Richard_K
        Participant

         

        Very sorry to hear about your father-in-law.  My joint pain was/ is limited to my knees but it is hard for me to distinguish between Zelboraf side effect and what is probably some arthritis.  I did however have very painful feet, about five months into treatment.  For that I took it easy and bought better fitting shoes; after about a month pain subsided and today it is only an annoyance or mildly painful if I’ve been walking on uneven terrain a lot.

        Dick

      • August 12, 2012 at 3:19 pm
      Sonhelpingdad
      Participant
      Hi Dick,
      It’s inspiring reading your posts.
      Perhaps you can help me with some advice for my father in law. He’s experiencing joint pain and doesn’t know if he should ‘push through it’ and keep trying to exercise, or rest/do nothing. Any tips?
      (i’ve put his details in my profile).

      Thanks for any help!

      • August 12, 2012 at 3:19 pm
      Sonhelpingdad
      Participant
      Hi Dick,
      It’s inspiring reading your posts.
      Perhaps you can help me with some advice for my father in law. He’s experiencing joint pain and doesn’t know if he should ‘push through it’ and keep trying to exercise, or rest/do nothing. Any tips?
      (i’ve put his details in my profile).

      Thanks for any help!

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