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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