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zelboraf roll call

Forums General Melanoma Community zelboraf roll call

  • Post
    boot2aboot
    Participant

    I know we did something like this before on the board, but i want to hear from all responders and non responders of zelboraf…i want to know everything you are going through…

    since the failure of triple whammy chemo (cisplatin, vinblastine and decarbazine)  i did or which did me in…i am leery of side effects…thank you.

    boots

    I know we did something like this before on the board, but i want to hear from all responders and non responders of zelboraf…i want to know everything you are going through…

    since the failure of triple whammy chemo (cisplatin, vinblastine and decarbazine)  i did or which did me in…i am leery of side effects…thank you.

    boots

Viewing 7 reply threads
  • Replies
      killmel
      Participant

      Hi Boots,

      zelboraf is the new name for BRAF-Rouche, approved Aug.2011. The side effects below have been reported my MPIPERS. Hopefully someof them willpost for you. I think that these side effects are very real tomany people soyou must take them seriously when deciding on taking zelboraf. Where are you being treatd??

      Good Luck

      
      http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1870.html 
       
      BRAF Inhibitors Side Effects and Management 
      Dr. Kim Margolin 
      Professor of Medicine - University of Washington 
      Member of Division of Clinical Research 
      Fred Hutchinson Cancer Research Center 
       
      The discovery of a gene mutation in about half of all melanomas that causes 
      uncontrolled activity of the BRAF protein led to the development of powerful 
      drugs to stop the growth of melanoma cells that depend on that pathway for their 
      survival. One such drug, vemurafenib, has provided a major reduction in tumors 
      in about 50% of the patients receiving it and a more modest tumor reduction 
      among another 20% of the patients. 
       
       
       
      Drugs of this class are called "targeted", since they are relatively specific 
      for a particular cancer cell pathway. They are given orally and do not cause 
      typical chemotherapy side effects like hair loss and low blood counts, but they 
      can cause other annoying and even dangerous side effects that need to be managed 
      with other interventions or with dose reductions. 
       
       
       
      The most common side effects are fatigue, altered taste sensation, and a variety 
      of skin changes, including extreme sun sensitivity requiring not only high SPF 
      sunscreen but, in some individuals, almost complete avoidance of any exposure to 
      sunlight. Many patients develop thick, sometimes painful calluses on the palms 
      and soles of the feet that appear yellow and may leave very tender skin 
      underneath when the calluses peel off. Other areas, such as the chest, neck and 
      face, can develop raised pink bumps with rough surfaces, sometimes with 
      prominent growth in one or more spots that turns into a very non-aggressive type 
      of non-melanoma skin cancer. These should be removed surgically but are not 
      life-threatening. 
       
       
       
      Some patients develop signs of inflammation such as painful swollen joints, 
      fever, and chills, that often go away without treatment but may require a short 
      course of steroids to suppress the inflammatory symptoms. While most patients 
      can tolerate these drugs well over long periods of time, some patients will 
      experience symptoms requiring other medications taken orally or applied to the 
      skin. It is important that all patients on these medications remain in close 
      communication with their treating team. 
       
      
      killmel
      Participant

      Hi Boots,

      zelboraf is the new name for BRAF-Rouche, approved Aug.2011. The side effects below have been reported my MPIPERS. Hopefully someof them willpost for you. I think that these side effects are very real tomany people soyou must take them seriously when deciding on taking zelboraf. Where are you being treatd??

      Good Luck

      
      http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1870.html 
       
      BRAF Inhibitors Side Effects and Management 
      Dr. Kim Margolin 
      Professor of Medicine - University of Washington 
      Member of Division of Clinical Research 
      Fred Hutchinson Cancer Research Center 
       
      The discovery of a gene mutation in about half of all melanomas that causes 
      uncontrolled activity of the BRAF protein led to the development of powerful 
      drugs to stop the growth of melanoma cells that depend on that pathway for their 
      survival. One such drug, vemurafenib, has provided a major reduction in tumors 
      in about 50% of the patients receiving it and a more modest tumor reduction 
      among another 20% of the patients. 
       
       
       
      Drugs of this class are called "targeted", since they are relatively specific 
      for a particular cancer cell pathway. They are given orally and do not cause 
      typical chemotherapy side effects like hair loss and low blood counts, but they 
      can cause other annoying and even dangerous side effects that need to be managed 
      with other interventions or with dose reductions. 
       
       
       
      The most common side effects are fatigue, altered taste sensation, and a variety 
      of skin changes, including extreme sun sensitivity requiring not only high SPF 
      sunscreen but, in some individuals, almost complete avoidance of any exposure to 
      sunlight. Many patients develop thick, sometimes painful calluses on the palms 
      and soles of the feet that appear yellow and may leave very tender skin 
      underneath when the calluses peel off. Other areas, such as the chest, neck and 
      face, can develop raised pink bumps with rough surfaces, sometimes with 
      prominent growth in one or more spots that turns into a very non-aggressive type 
      of non-melanoma skin cancer. These should be removed surgically but are not 
      life-threatening. 
       
       
       
      Some patients develop signs of inflammation such as painful swollen joints, 
      fever, and chills, that often go away without treatment but may require a short 
      course of steroids to suppress the inflammatory symptoms. While most patients 
      can tolerate these drugs well over long periods of time, some patients will 
      experience symptoms requiring other medications taken orally or applied to the 
      skin. It is important that all patients on these medications remain in close 
      communication with their treating team. 
       
      
      Richard_K
      Participant

      Boots:

      I am part of the BRIM 2 trial for Zelboraf since March 2010.  Following are the side effects I have experienced: mild joint pain, mild fatigue, body rash (none on face), photosensitivity, body hair loss (not head), mild neuropathy/ swelling in feet, and warts (one of which turned out to be a squamous cell carcinoma).

      As of today I still have: mild body rash (none on face), photosensitivity, body hair loss (it's growing back), and mild neuropathy/ swelling in feet.

      My profile gives some additional history.

      Dick

      Richard_K
      Participant

      Boots:

      I am part of the BRIM 2 trial for Zelboraf since March 2010.  Following are the side effects I have experienced: mild joint pain, mild fatigue, body rash (none on face), photosensitivity, body hair loss (not head), mild neuropathy/ swelling in feet, and warts (one of which turned out to be a squamous cell carcinoma).

      As of today I still have: mild body rash (none on face), photosensitivity, body hair loss (it's growing back), and mild neuropathy/ swelling in feet.

      My profile gives some additional history.

      Dick

      killmel
      Participant

      Hi Boots,

      Besides the side effects, already noted in this post, this drug was reported to ONLY work on an average between 8-10 months. Then the melaonma find another pathway & starts growing again.

      Hope this helps!

      A.

      killmel
      Participant

      Hi Boots,

      Besides the side effects, already noted in this post, this drug was reported to ONLY work on an average between 8-10 months. Then the melaonma find another pathway & starts growing again.

      Hope this helps!

      A.

      TracyLee
      Participant

      Boots,

      Read my profile for full details…

      I completed Yervoy/ip on 7/29, RAPIDLY spiralled down…began BRAF on 8/8.

      For me, it's been a miracle. 8/1 I was in the hospital drowning in lung fluid, 9/1 I'm walking the dog 5 miles! 

      The U of Penn doctor, feels that I'm a late ipi responder and that BRAF in conjunction with ipi is the magic cocktail.

      I know BRAF won't work forever. But I will surely take what I can get!

      Best of luck,

      TracyLee

      TracyLee
      Participant

      Boots,

      Read my profile for full details…

      I completed Yervoy/ip on 7/29, RAPIDLY spiralled down…began BRAF on 8/8.

      For me, it's been a miracle. 8/1 I was in the hospital drowning in lung fluid, 9/1 I'm walking the dog 5 miles! 

      The U of Penn doctor, feels that I'm a late ipi responder and that BRAF in conjunction with ipi is the magic cocktail.

      I know BRAF won't work forever. But I will surely take what I can get!

      Best of luck,

      TracyLee

        Laurie from maine
        Participant

        HI,

        I started Vemurafenib a month ago.  I immediately seemed to feel the pain going away that I was experiencing from bones and ribs(maybe that was lung tumor?) .  So that is the positive effect I have had, also lump/tumor in my breast was gone with in two weeks, truly amazing.

        Side effects I have had to deal with the sun sensitivity, skin growths and a little joint pain.  Have found that being out in sun during 10-2 even with sun screen can cause burns for me, so have had to make sure to really cover up during that time.   I have also developed  some growths which were recently removed by dermatologist and will be tested.  I have also gotten lots of little warts that are popping up all over my body  ugh gross and very non sexy ha.  I have joint pain in my wrist.   But I am fine with these side effects they are all minor and very liveable.

        I was told by my oncologist's office that now that drug is approved I will be weaned from clinical trial and become just a patient with my oncologist  yeah!  I was not a fan of the strictness of the trial, the paperwork,  and the worry that I could be bumped off it at any time.

        It will be great to hear about all the others doing this drug at this time and hear how you are all doing.  Take care everyone, stay strong!

        laurie from maine 🙂

         

        Laurie from maine
        Participant

        HI,

        I started Vemurafenib a month ago.  I immediately seemed to feel the pain going away that I was experiencing from bones and ribs(maybe that was lung tumor?) .  So that is the positive effect I have had, also lump/tumor in my breast was gone with in two weeks, truly amazing.

        Side effects I have had to deal with the sun sensitivity, skin growths and a little joint pain.  Have found that being out in sun during 10-2 even with sun screen can cause burns for me, so have had to make sure to really cover up during that time.   I have also developed  some growths which were recently removed by dermatologist and will be tested.  I have also gotten lots of little warts that are popping up all over my body  ugh gross and very non sexy ha.  I have joint pain in my wrist.   But I am fine with these side effects they are all minor and very liveable.

        I was told by my oncologist's office that now that drug is approved I will be weaned from clinical trial and become just a patient with my oncologist  yeah!  I was not a fan of the strictness of the trial, the paperwork,  and the worry that I could be bumped off it at any time.

        It will be great to hear about all the others doing this drug at this time and hear how you are all doing.  Take care everyone, stay strong!

        laurie from maine 🙂

         

        Richard_K
        Participant

        Laurie

         

        After seventeen months on Zelboraf (Vemurafenib), I too still have some of your side effects; a little bit of joint pain (probably just from getting older) and a mild body rash.  The skin growths basically stopped several months ago.  For me the worst side effect is the sun sensitivity.

        I love to garden and have found that I will burn if not protected even one hour before sunset or one hour after sunrise.  (Hopefully as we move towards Autumn, that time will increase).  I have worked around this by making sure to always wear a wide brim hat and protective clothing.  I have a couple of hats I wear but my favorite is a Tilley that is crushable and just tossed in the wash if dirty.  For the summer months, I wear a shirt from your neighbor, LL Bean.  Their Tropicwear line is good to SPF 50+.  If I’m out in the sun between 9:00 and 3:00, clothing is not enough and sunscreen is needed.

        Keep up the good results.

        Dick

        Richard_K
        Participant

        Laurie

         

        After seventeen months on Zelboraf (Vemurafenib), I too still have some of your side effects; a little bit of joint pain (probably just from getting older) and a mild body rash.  The skin growths basically stopped several months ago.  For me the worst side effect is the sun sensitivity.

        I love to garden and have found that I will burn if not protected even one hour before sunset or one hour after sunrise.  (Hopefully as we move towards Autumn, that time will increase).  I have worked around this by making sure to always wear a wide brim hat and protective clothing.  I have a couple of hats I wear but my favorite is a Tilley that is crushable and just tossed in the wash if dirty.  For the summer months, I wear a shirt from your neighbor, LL Bean.  Their Tropicwear line is good to SPF 50+.  If I’m out in the sun between 9:00 and 3:00, clothing is not enough and sunscreen is needed.

        Keep up the good results.

        Dick

        Laurie from maine
        Participant

        Hi Dick,

        Wow you have made me feel good knowing you have been on it successfully for 17 months that is great!  I wonder are their others on here who have been on it that long or longer?  I kept hearing from my doctor 8 months more or less. 

        Thank you for sun tips.  I had a nurse tell me about Coolibar line of clothing and sunscreen.   I needed to find some light cool gloves for my hands so hopefully they will help.  

        Thank you

        laurie from maine 

        Laurie from maine
        Participant

        Hi Dick,

        Wow you have made me feel good knowing you have been on it successfully for 17 months that is great!  I wonder are their others on here who have been on it that long or longer?  I kept hearing from my doctor 8 months more or less. 

        Thank you for sun tips.  I had a nurse tell me about Coolibar line of clothing and sunscreen.   I needed to find some light cool gloves for my hands so hopefully they will help.  

        Thank you

        laurie from maine 

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