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Zelboraf as adjuvant therapy?

Forums General Melanoma Community Zelboraf as adjuvant therapy?

  • Post
    davidfromsingapore
    Participant

      Hello 

      I was on this board 3 years ago when i was stage 3B.  Unfortunaltely a few weeks ago I was having headaches and a scan revealed 3 brain mets.  I had 2 removed via resection and the third via radiation (SRS).  My life is a bit complicated.  I am an American citizen with a wife and 3 children but we live in Singapore.  I have an oncologist at Mayo in Rochester, Minnesota and one here.  My Mayo doc is recommending that I start with Zelboraf soon.  So here are my questions:  

      Hello 

      I was on this board 3 years ago when i was stage 3B.  Unfortunaltely a few weeks ago I was having headaches and a scan revealed 3 brain mets.  I had 2 removed via resection and the third via radiation (SRS).  My life is a bit complicated.  I am an American citizen with a wife and 3 children but we live in Singapore.  I have an oncologist at Mayo in Rochester, Minnesota and one here.  My Mayo doc is recommending that I start with Zelboraf soon.  So here are my questions:  

      1) Is Zelboraf considered adjuvant therapy – meaning that it is given to patients who had melanoma removed but for the time being are NED?  Or is it only effective when a patient has active lesions?

      2) Is it possible to get a complete or durable response from Zelboraf?

      3) Are there any of you out there who are taking Zelboraf who like me have brain mets or had them and you are taking Zelboraf to keep the diease at bay? Is it working?

      4) Are there any of you out there who are taking Zelboraf and have had long term responses?

       

      Thanks in advance for your replies.  I am looking forward to getting to know some of your again now that I am back on the board.  

       

      David

    Viewing 8 reply threads
    • Replies
        mombase
        Participant

          Hi, David,

          Welcome and sorry that you are back on the board. I, too, had surgical resection on a brain met, have lungs full of tumors, and a liver met. I opted for Yervoy because the tumors did not appear to be aggressive in a 3-month period of time, and was told by my onc that the immune-improved T-cells would cross the blood brain barrier. But I have to say, there are as many opinions as oncologists, so it is a bit confusing and frustrating. So I chose a plan A and Plan B. When Plan A stops working and I move to Plan B, I will choose a Plan C. That way, I am not overwhelmed and making myself crazy from indecision. I just think that no one can be very sure about the treatments because everyone responds differently. I think the best approach is to buy as much time as possible because huge changes in treatment are just on the horizon.

          Here is a link to a past thread about  Zelboraf and brain mets…

          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/zelboraf-brain-tumors-anyone

          I am glad that you have an oncologist in Singapore. Hopefully you can get your desired treatment without having to come back stateside!

          Cristy, Stage IV

          mombase
          Participant

            Hi, David,

            Welcome and sorry that you are back on the board. I, too, had surgical resection on a brain met, have lungs full of tumors, and a liver met. I opted for Yervoy because the tumors did not appear to be aggressive in a 3-month period of time, and was told by my onc that the immune-improved T-cells would cross the blood brain barrier. But I have to say, there are as many opinions as oncologists, so it is a bit confusing and frustrating. So I chose a plan A and Plan B. When Plan A stops working and I move to Plan B, I will choose a Plan C. That way, I am not overwhelmed and making myself crazy from indecision. I just think that no one can be very sure about the treatments because everyone responds differently. I think the best approach is to buy as much time as possible because huge changes in treatment are just on the horizon.

            Here is a link to a past thread about  Zelboraf and brain mets…

            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/zelboraf-brain-tumors-anyone

            I am glad that you have an oncologist in Singapore. Hopefully you can get your desired treatment without having to come back stateside!

            Cristy, Stage IV

            mombase
            Participant

              Hi, David,

              Welcome and sorry that you are back on the board. I, too, had surgical resection on a brain met, have lungs full of tumors, and a liver met. I opted for Yervoy because the tumors did not appear to be aggressive in a 3-month period of time, and was told by my onc that the immune-improved T-cells would cross the blood brain barrier. But I have to say, there are as many opinions as oncologists, so it is a bit confusing and frustrating. So I chose a plan A and Plan B. When Plan A stops working and I move to Plan B, I will choose a Plan C. That way, I am not overwhelmed and making myself crazy from indecision. I just think that no one can be very sure about the treatments because everyone responds differently. I think the best approach is to buy as much time as possible because huge changes in treatment are just on the horizon.

              Here is a link to a past thread about  Zelboraf and brain mets…

              http://www.melanoma.org/community/mpip-melanoma-patients-information-page/zelboraf-brain-tumors-anyone

              I am glad that you have an oncologist in Singapore. Hopefully you can get your desired treatment without having to come back stateside!

              Cristy, Stage IV

              lhaley
              Participant

                David,

                I'm sorry that you've had to join back with us.  B-raf drug is not known for having a long time response, but it can work quickly. 

                Is the rest of the scan clear besides the brain area?   Right now they are waiting to see if the SRS works in my case. I did talk to my mel specialist and because the PET is clear they are not discussing this right now.  Different Doctors have different opinions.  When is your next scan to see if the SRS has started to work?

                Linda

                  davidfromsingapore
                  Participant

                    Yes – only brain mets.  Next scan will be later this month.  Fingers crossed.  Best of luck to you and thanks for your reply.   

                    davidfromsingapore
                    Participant

                      Yes – only brain mets.  Next scan will be later this month.  Fingers crossed.  Best of luck to you and thanks for your reply.   

                      davidfromsingapore
                      Participant

                        Yes – only brain mets.  Next scan will be later this month.  Fingers crossed.  Best of luck to you and thanks for your reply.   

                      lhaley
                      Participant

                        David,

                        I'm sorry that you've had to join back with us.  B-raf drug is not known for having a long time response, but it can work quickly. 

                        Is the rest of the scan clear besides the brain area?   Right now they are waiting to see if the SRS works in my case. I did talk to my mel specialist and because the PET is clear they are not discussing this right now.  Different Doctors have different opinions.  When is your next scan to see if the SRS has started to work?

                        Linda

                        lhaley
                        Participant

                          David,

                          I'm sorry that you've had to join back with us.  B-raf drug is not known for having a long time response, but it can work quickly. 

                          Is the rest of the scan clear besides the brain area?   Right now they are waiting to see if the SRS works in my case. I did talk to my mel specialist and because the PET is clear they are not discussing this right now.  Different Doctors have different opinions.  When is your next scan to see if the SRS has started to work?

                          Linda

                          jmmm
                          Participant
                            My husband started Zelboraf a month ago with a huge brain met and mets all over his body. He just had a MRI yesterday and the brain met did shrink a bit, unfortunately he’ll still need surgery next week. But, his melanoma specialist says it does pass the bb barrier. It does not have a durable response…lasts average 4-8 months, but the doctor says he keeps patients on it, even after the cancer starts growing again, because it seems to continue to help some. I don’t think you can start Zelboraf if you have NED. It can gave a complete, temporary response. We’re awaiting scans in a couple of weeks to see what Zelboraf did elsewhere in hs body..the one tumor we could feel is completely gone, so we’re hopeful!
                            jmmm
                            Participant
                              My husband started Zelboraf a month ago with a huge brain met and mets all over his body. He just had a MRI yesterday and the brain met did shrink a bit, unfortunately he’ll still need surgery next week. But, his melanoma specialist says it does pass the bb barrier. It does not have a durable response…lasts average 4-8 months, but the doctor says he keeps patients on it, even after the cancer starts growing again, because it seems to continue to help some. I don’t think you can start Zelboraf if you have NED. It can gave a complete, temporary response. We’re awaiting scans in a couple of weeks to see what Zelboraf did elsewhere in hs body..the one tumor we could feel is completely gone, so we’re hopeful!
                              jmmm
                              Participant
                                My husband started Zelboraf a month ago with a huge brain met and mets all over his body. He just had a MRI yesterday and the brain met did shrink a bit, unfortunately he’ll still need surgery next week. But, his melanoma specialist says it does pass the bb barrier. It does not have a durable response…lasts average 4-8 months, but the doctor says he keeps patients on it, even after the cancer starts growing again, because it seems to continue to help some. I don’t think you can start Zelboraf if you have NED. It can gave a complete, temporary response. We’re awaiting scans in a couple of weeks to see what Zelboraf did elsewhere in hs body..the one tumor we could feel is completely gone, so we’re hopeful!
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