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Wanting to take a break from Zellboraf

Forums General Melanoma Community Wanting to take a break from Zellboraf

  • Post
    Judy D
    Participant
      I have been on Zelboraf for 18 mo. Had recent CT and NED, yea! My question is has anyone taken a small break from Z? I want to go on vacation and would like a break from the side effects. I am thinking only for one month. What are your thoghts or experiance in this area?
      Thanks, Judy

      I have been on Zelboraf for 18 mo. Had recent CT and NED, yea! My question is has anyone taken a small break from Z? I want to go on vacation and would like a break from the side effects. I am thinking only for one month. What are your thoghts or experiance in this area?
      Thanks, Judy

    Viewing 11 reply threads
    • Replies
        meeshka6059
        Participant

          I have recently read that taking a break from Z might be a good thing. UCSF has done a study that suggests taking a break "tricks" the melanoma from finding ways "around it". Definitely discuss with your doctor, and DEFINITELY enjoy your vacation!!! Peace and blessings, Michelle

          meeshka6059
          Participant

            I have recently read that taking a break from Z might be a good thing. UCSF has done a study that suggests taking a break "tricks" the melanoma from finding ways "around it". Definitely discuss with your doctor, and DEFINITELY enjoy your vacation!!! Peace and blessings, Michelle

            meeshka6059
            Participant

              I have recently read that taking a break from Z might be a good thing. UCSF has done a study that suggests taking a break "tricks" the melanoma from finding ways "around it". Definitely discuss with your doctor, and DEFINITELY enjoy your vacation!!! Peace and blessings, Michelle

                NYKaren
                Participant
                  Michelle, do you have a link to that study? Is it with humans? I take breaks but freak out the entire time.
                  Thanks for the info, hope you’re doing ok. Sending you a cyber-hug.
                  Karen.
                  meeshka6059
                  Participant

                    Here you go: not humans…. mice… but here's the link. xo ~m

                    Drug-Resistant Melanoma Tumors Shrink
                    When Therapy Is Interrupted

                    ‘Intermittent Dosing’ Strategy in Lab Mice Suggests
                    Simple Way to Help People with Late-Stage Melanoma

                    http://www.ucsf.edu/news/2013/01/13389/drug-resistant-melanoma-tumors-shrink-when-therapy-interrupted

                    meeshka6059
                    Participant

                      Here you go: not humans…. mice… but here's the link. xo ~m

                      Drug-Resistant Melanoma Tumors Shrink
                      When Therapy Is Interrupted

                      ‘Intermittent Dosing’ Strategy in Lab Mice Suggests
                      Simple Way to Help People with Late-Stage Melanoma

                      http://www.ucsf.edu/news/2013/01/13389/drug-resistant-melanoma-tumors-shrink-when-therapy-interrupted

                      meeshka6059
                      Participant

                        Here you go: not humans…. mice… but here's the link. xo ~m

                        Drug-Resistant Melanoma Tumors Shrink
                        When Therapy Is Interrupted

                        ‘Intermittent Dosing’ Strategy in Lab Mice Suggests
                        Simple Way to Help People with Late-Stage Melanoma

                        http://www.ucsf.edu/news/2013/01/13389/drug-resistant-melanoma-tumors-shrink-when-therapy-interrupted

                        NYKaren
                        Participant
                          Michelle, do you have a link to that study? Is it with humans? I take breaks but freak out the entire time.
                          Thanks for the info, hope you’re doing ok. Sending you a cyber-hug.
                          Karen.
                          NYKaren
                          Participant
                            Michelle, do you have a link to that study? Is it with humans? I take breaks but freak out the entire time.
                            Thanks for the info, hope you’re doing ok. Sending you a cyber-hug.
                            Karen.
                            Judy D
                            Participant
                              Thanks for the information Michelle. I am going to look at the link , sounds good.
                              Judy D
                              Participant
                                Thanks for the information Michelle. I am going to look at the link , sounds good.
                                Judy D
                                Participant
                                  Thanks for the information Michelle. I am going to look at the link , sounds good.
                                NYKaren
                                Participant
                                  Judy, such great news, and 18 months too!
                                  How long on Zel did it take you to achieve NED? I just had 3-month PET and it shows significant improvement– metabolic resolution in some spots, but I know that there is still some Mel. (I have cutaneous–most lesions have flattened but the few remaining raised ones were biopsied–and while the tumor in my ear-canal is almost gone, (yea, I can hear and my eardrum is visible for the first time in a year!) we’re sure there’s some Mel there too.
                                  Thanks,
                                  Karen
                                  PS have a GREAT vacation!
                                    Judy D
                                    Participant
                                      Hi Karen,
                                      I was on z for about 6 months before I was NED but then in Aug of this year I had a small lesion in my right thigh and it was removed. Again PET showed NED. Skip ahead to Dec. of 2012 another new lesion near the one that was removed in Aug. My oncologist then decided it was time for radiation. I did 5 rounds of very high does, not fun! Because of the severe burn that came from it, they think probably because of the Zelboraf and radiation combo. The good thing though is I am once again NED!!
                                      Probably more than you wanted to know but it is working, Praise God!
                                      Thanks for the info, I am planning on talking with my onc. At the end of the month
                                      Thanks again,
                                      Judy
                                      Judy D
                                      Participant
                                        Hi Karen,
                                        I was on z for about 6 months before I was NED but then in Aug of this year I had a small lesion in my right thigh and it was removed. Again PET showed NED. Skip ahead to Dec. of 2012 another new lesion near the one that was removed in Aug. My oncologist then decided it was time for radiation. I did 5 rounds of very high does, not fun! Because of the severe burn that came from it, they think probably because of the Zelboraf and radiation combo. The good thing though is I am once again NED!!
                                        Probably more than you wanted to know but it is working, Praise God!
                                        Thanks for the info, I am planning on talking with my onc. At the end of the month
                                        Thanks again,
                                        Judy
                                        Judy D
                                        Participant
                                          Hi Karen,
                                          I was on z for about 6 months before I was NED but then in Aug of this year I had a small lesion in my right thigh and it was removed. Again PET showed NED. Skip ahead to Dec. of 2012 another new lesion near the one that was removed in Aug. My oncologist then decided it was time for radiation. I did 5 rounds of very high does, not fun! Because of the severe burn that came from it, they think probably because of the Zelboraf and radiation combo. The good thing though is I am once again NED!!
                                          Probably more than you wanted to know but it is working, Praise God!
                                          Thanks for the info, I am planning on talking with my onc. At the end of the month
                                          Thanks again,
                                          Judy
                                        NYKaren
                                        Participant
                                          Judy, such great news, and 18 months too!
                                          How long on Zel did it take you to achieve NED? I just had 3-month PET and it shows significant improvement– metabolic resolution in some spots, but I know that there is still some Mel. (I have cutaneous–most lesions have flattened but the few remaining raised ones were biopsied–and while the tumor in my ear-canal is almost gone, (yea, I can hear and my eardrum is visible for the first time in a year!) we’re sure there’s some Mel there too.
                                          Thanks,
                                          Karen
                                          PS have a GREAT vacation!
                                          NYKaren
                                          Participant
                                            Judy, such great news, and 18 months too!
                                            How long on Zel did it take you to achieve NED? I just had 3-month PET and it shows significant improvement– metabolic resolution in some spots, but I know that there is still some Mel. (I have cutaneous–most lesions have flattened but the few remaining raised ones were biopsied–and while the tumor in my ear-canal is almost gone, (yea, I can hear and my eardrum is visible for the first time in a year!) we’re sure there’s some Mel there too.
                                            Thanks,
                                            Karen
                                            PS have a GREAT vacation!
                                            POW
                                            Participant

                                              Judy, I would be very leery about going off Zelboraf for a whole month. I think that's too long. The downside of making the wrong choice here would be devestating. I might–MIGHT– take a week or two off (as in the Nature paper about the mice) but only with my oncologist's support. Please talk to your oncolgist about this and show him/her the Nature paper. If the doctor agrees that intermittent dosing is a good idea, you might as well start that now and see how it goes. If the doctor disagrees with intermittent dosing, just accept that the side effects of Zelboraf are worth being NED and having the opportunity to even have a vacation.

                                              POW
                                              Participant

                                                Judy, I would be very leery about going off Zelboraf for a whole month. I think that's too long. The downside of making the wrong choice here would be devestating. I might–MIGHT– take a week or two off (as in the Nature paper about the mice) but only with my oncologist's support. Please talk to your oncolgist about this and show him/her the Nature paper. If the doctor agrees that intermittent dosing is a good idea, you might as well start that now and see how it goes. If the doctor disagrees with intermittent dosing, just accept that the side effects of Zelboraf are worth being NED and having the opportunity to even have a vacation.

                                                POW
                                                Participant

                                                  Judy, I would be very leery about going off Zelboraf for a whole month. I think that's too long. The downside of making the wrong choice here would be devestating. I might–MIGHT– take a week or two off (as in the Nature paper about the mice) but only with my oncologist's support. Please talk to your oncolgist about this and show him/her the Nature paper. If the doctor agrees that intermittent dosing is a good idea, you might as well start that now and see how it goes. If the doctor disagrees with intermittent dosing, just accept that the side effects of Zelboraf are worth being NED and having the opportunity to even have a vacation.

                                                  awillett1991
                                                  Participant
                                                    Sorta scares me to think about more than 2 weeks Judy. I was off for Ipi and you can check my profile for details.. I totally get your frustration with it, maybe dabrafenib will be out soon. What does your dr say?
                                                    awillett1991
                                                    Participant
                                                      Sorta scares me to think about more than 2 weeks Judy. I was off for Ipi and you can check my profile for details.. I totally get your frustration with it, maybe dabrafenib will be out soon. What does your dr say?
                                                        Bubbles
                                                        Participant

                                                          Bottom line…I would encourage you to speak wih your melanoma oncologists re the newest data for BRAF dosing and about your plans…since they know you and your particulars.   However…here is a post I made recently:

                                                          Better ways to use BRAF inhibitors for melanoma!!!

                                                           

                                                          In 2011, the FDA approved vermurafenib (Zelboraf) for the treatment of late stage melanoma patients with BRAF positive mutations. (About 50% of all melanoma patients will test positive for the required mutation…though with new, more refined testing perhaps that number will rise…as patients already tested and found negative with older tests have been found to be positive using the newer techniques.)  BRAF positive melanoma patients who respond to Zelboraf (about 70-80%) experience a rapid and miraculous decrease in their tumors that lasts for about 7-8 months.  At that point, most patients' tumors cease to respond to the drug and develop a lethal form of drug resistant tumors.  There are amazing exceptions to this however, from patients themselves reporting a durable and constant response to Zelboraf of more than 13-35 months.  (You rock Dick_K and jmmm!!!!!)  Sadly, they are the exceptions.

                                                          Sooooo, how are we going to make 2013 better??

                                                          On January 9, Sciencedaily.com reported (with info largely from a report in Nature, 2013) that researchers in California and Switzerland have discovered that when melanoma cells develop resistance to vermurafenib (Zel) they have simultaneously developed an addiction to it.  Once "addicted", the melanoma cells actually use vermurafenib to foster rapidly progressing, drug resistant tumors.  The teams began a study of dosing mice with melanoma in an "on-again/off-again treatment schedule" and found that this method of dosing prolonged the lives of mice with BRAFi resistant melanoma tumors.

                                                          Specific studies in humans with this sort of on-again/off-again dosing pattern are being formally planned. Additionally, doctors have gradually been noting that in their patients who developed resistance to BRAF inhibitors and went on to other therapies, but were then reintroduced to Zel later, did, in fact, RE-respond.  Now, medical opinion is heading toward the idea of reducing tumor burden in patients with Zel then, before tumors develop resistance, switch to a different therapy like ipi or anti-PD1.  Or, as noted in the article, use an interrupted pattern of dosing with Zel in the first place.  Another way of trying to maintain the response of Zel is to combine it with MEK (more on that later) or with other drugs.  Furthermore, there is recent evidence that the use of BRAF inhibitors increases the amount of melanoma specific antigen present and may be a rationale for making the tumor cells more susceptible to immune therapy. Thereby, providing a rationale for planned sequencing of BRAF inhibitors followed by immunotherapy.  However, the proof is in the pudding and that remains to be proven.

                                                          Bottom line….better.  Keep up the research…AND…hang in there ratties!!!! – c

                                                          Bubbles
                                                          Participant

                                                            Bottom line…I would encourage you to speak wih your melanoma oncologists re the newest data for BRAF dosing and about your plans…since they know you and your particulars.   However…here is a post I made recently:

                                                            Better ways to use BRAF inhibitors for melanoma!!!

                                                             

                                                            In 2011, the FDA approved vermurafenib (Zelboraf) for the treatment of late stage melanoma patients with BRAF positive mutations. (About 50% of all melanoma patients will test positive for the required mutation…though with new, more refined testing perhaps that number will rise…as patients already tested and found negative with older tests have been found to be positive using the newer techniques.)  BRAF positive melanoma patients who respond to Zelboraf (about 70-80%) experience a rapid and miraculous decrease in their tumors that lasts for about 7-8 months.  At that point, most patients' tumors cease to respond to the drug and develop a lethal form of drug resistant tumors.  There are amazing exceptions to this however, from patients themselves reporting a durable and constant response to Zelboraf of more than 13-35 months.  (You rock Dick_K and jmmm!!!!!)  Sadly, they are the exceptions.

                                                            Sooooo, how are we going to make 2013 better??

                                                            On January 9, Sciencedaily.com reported (with info largely from a report in Nature, 2013) that researchers in California and Switzerland have discovered that when melanoma cells develop resistance to vermurafenib (Zel) they have simultaneously developed an addiction to it.  Once "addicted", the melanoma cells actually use vermurafenib to foster rapidly progressing, drug resistant tumors.  The teams began a study of dosing mice with melanoma in an "on-again/off-again treatment schedule" and found that this method of dosing prolonged the lives of mice with BRAFi resistant melanoma tumors.

                                                            Specific studies in humans with this sort of on-again/off-again dosing pattern are being formally planned. Additionally, doctors have gradually been noting that in their patients who developed resistance to BRAF inhibitors and went on to other therapies, but were then reintroduced to Zel later, did, in fact, RE-respond.  Now, medical opinion is heading toward the idea of reducing tumor burden in patients with Zel then, before tumors develop resistance, switch to a different therapy like ipi or anti-PD1.  Or, as noted in the article, use an interrupted pattern of dosing with Zel in the first place.  Another way of trying to maintain the response of Zel is to combine it with MEK (more on that later) or with other drugs.  Furthermore, there is recent evidence that the use of BRAF inhibitors increases the amount of melanoma specific antigen present and may be a rationale for making the tumor cells more susceptible to immune therapy. Thereby, providing a rationale for planned sequencing of BRAF inhibitors followed by immunotherapy.  However, the proof is in the pudding and that remains to be proven.

                                                            Bottom line….better.  Keep up the research…AND…hang in there ratties!!!! – c

                                                            Bubbles
                                                            Participant

                                                              Bottom line…I would encourage you to speak wih your melanoma oncologists re the newest data for BRAF dosing and about your plans…since they know you and your particulars.   However…here is a post I made recently:

                                                              Better ways to use BRAF inhibitors for melanoma!!!

                                                               

                                                              In 2011, the FDA approved vermurafenib (Zelboraf) for the treatment of late stage melanoma patients with BRAF positive mutations. (About 50% of all melanoma patients will test positive for the required mutation…though with new, more refined testing perhaps that number will rise…as patients already tested and found negative with older tests have been found to be positive using the newer techniques.)  BRAF positive melanoma patients who respond to Zelboraf (about 70-80%) experience a rapid and miraculous decrease in their tumors that lasts for about 7-8 months.  At that point, most patients' tumors cease to respond to the drug and develop a lethal form of drug resistant tumors.  There are amazing exceptions to this however, from patients themselves reporting a durable and constant response to Zelboraf of more than 13-35 months.  (You rock Dick_K and jmmm!!!!!)  Sadly, they are the exceptions.

                                                              Sooooo, how are we going to make 2013 better??

                                                              On January 9, Sciencedaily.com reported (with info largely from a report in Nature, 2013) that researchers in California and Switzerland have discovered that when melanoma cells develop resistance to vermurafenib (Zel) they have simultaneously developed an addiction to it.  Once "addicted", the melanoma cells actually use vermurafenib to foster rapidly progressing, drug resistant tumors.  The teams began a study of dosing mice with melanoma in an "on-again/off-again treatment schedule" and found that this method of dosing prolonged the lives of mice with BRAFi resistant melanoma tumors.

                                                              Specific studies in humans with this sort of on-again/off-again dosing pattern are being formally planned. Additionally, doctors have gradually been noting that in their patients who developed resistance to BRAF inhibitors and went on to other therapies, but were then reintroduced to Zel later, did, in fact, RE-respond.  Now, medical opinion is heading toward the idea of reducing tumor burden in patients with Zel then, before tumors develop resistance, switch to a different therapy like ipi or anti-PD1.  Or, as noted in the article, use an interrupted pattern of dosing with Zel in the first place.  Another way of trying to maintain the response of Zel is to combine it with MEK (more on that later) or with other drugs.  Furthermore, there is recent evidence that the use of BRAF inhibitors increases the amount of melanoma specific antigen present and may be a rationale for making the tumor cells more susceptible to immune therapy. Thereby, providing a rationale for planned sequencing of BRAF inhibitors followed by immunotherapy.  However, the proof is in the pudding and that remains to be proven.

                                                              Bottom line….better.  Keep up the research…AND…hang in there ratties!!!! – c

                                                            awillett1991
                                                            Participant
                                                              Sorta scares me to think about more than 2 weeks Judy. I was off for Ipi and you can check my profile for details.. I totally get your frustration with it, maybe dabrafenib will be out soon. What does your dr say?
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