Zelboraf…. for life?!

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  • Post
    • April 4, 2013 at 12:21 am
    Acacia
    Participant

      My husband was diagnosed with Melanoma on January 31, 2013 and began taking Zelboraf on Febuary 1st. He was told he'd be on it for the rest of his life (or till it stops working pretty much) Has anyone else been told they'd have to take these pills for the remainer of their life? This struck odd to both of us.

      My husband was diagnosed with Melanoma on January 31, 2013 and began taking Zelboraf on Febuary 1st. He was told he'd be on it for the rest of his life (or till it stops working pretty much) Has anyone else been told they'd have to take these pills for the remainer of their life? This struck odd to both of us.

    Viewing 8 reply threads
    • Replies
        • April 4, 2013 at 12:33 am
        jmmm
        Participant
          Sounds about right…melanoma isn’t curable…treatable, not curable. The Zelboraf blocks the cancer from growing, it’s such a new medication, no one really knows how to use it the best way…some people are on reduced doses, some take it on and off, but it truly is a life extending drug and once you stop taking it, the cancer will most likely come back with vengeance. It typically lasts several months, before the cancer finds a way around it, but for some fortunate few, it works much longer. There are a few patients that have been on it for 2-3 years…my husband has been on it for almost 18 months and just had NED scans. He will stay on it until the cancer begins to grow again.
          • April 4, 2013 at 12:33 am
          jmmm
          Participant
            Sounds about right…melanoma isn’t curable…treatable, not curable. The Zelboraf blocks the cancer from growing, it’s such a new medication, no one really knows how to use it the best way…some people are on reduced doses, some take it on and off, but it truly is a life extending drug and once you stop taking it, the cancer will most likely come back with vengeance. It typically lasts several months, before the cancer finds a way around it, but for some fortunate few, it works much longer. There are a few patients that have been on it for 2-3 years…my husband has been on it for almost 18 months and just had NED scans. He will stay on it until the cancer begins to grow again.
              • April 4, 2013 at 12:44 am
              Acacia
              Participant

                Thank you, it's certainly a lot to take in all at once. We will be heading to John Hopkins sometime next month, to their "melanoma center" to give my husband's doctor a second opinion and a jump on the next step, if and when we need it.

                • April 4, 2013 at 12:44 am
                Acacia
                Participant

                  Thank you, it's certainly a lot to take in all at once. We will be heading to John Hopkins sometime next month, to their "melanoma center" to give my husband's doctor a second opinion and a jump on the next step, if and when we need it.

                  • April 4, 2013 at 12:44 am
                  Acacia
                  Participant

                    Thank you, it's certainly a lot to take in all at once. We will be heading to John Hopkins sometime next month, to their "melanoma center" to give my husband's doctor a second opinion and a jump on the next step, if and when we need it.

                  • April 4, 2013 at 12:33 am
                  jmmm
                  Participant
                    Sounds about right…melanoma isn’t curable…treatable, not curable. The Zelboraf blocks the cancer from growing, it’s such a new medication, no one really knows how to use it the best way…some people are on reduced doses, some take it on and off, but it truly is a life extending drug and once you stop taking it, the cancer will most likely come back with vengeance. It typically lasts several months, before the cancer finds a way around it, but for some fortunate few, it works much longer. There are a few patients that have been on it for 2-3 years…my husband has been on it for almost 18 months and just had NED scans. He will stay on it until the cancer begins to grow again.
                    • April 4, 2013 at 7:09 pm
                    Tina D
                    Participant

                      At this point, yes… that is the protocol. But, that does not mean it will stay that way as time passes. The drug is so new that there is much they do still not know. For instance, recently they have begun doing intermittent dosing in some cases. As more creative dosing and such is done in an effort to reduce side effects and extend response time, I think they will probably adjust things. I guess time will tell…

                      Tina

                      • April 4, 2013 at 7:09 pm
                      Tina D
                      Participant

                        At this point, yes… that is the protocol. But, that does not mean it will stay that way as time passes. The drug is so new that there is much they do still not know. For instance, recently they have begun doing intermittent dosing in some cases. As more creative dosing and such is done in an effort to reduce side effects and extend response time, I think they will probably adjust things. I guess time will tell…

                        Tina

                        • April 4, 2013 at 7:09 pm
                        Tina D
                        Participant

                          At this point, yes… that is the protocol. But, that does not mean it will stay that way as time passes. The drug is so new that there is much they do still not know. For instance, recently they have begun doing intermittent dosing in some cases. As more creative dosing and such is done in an effort to reduce side effects and extend response time, I think they will probably adjust things. I guess time will tell…

                          Tina

                          • April 4, 2013 at 8:15 pm
                          Tim–MRF
                          Guest
                            Actually, the situation is a bit more nuanced than this. He will take the drug for as long as it works. The median is about 6 months, but some go much longer. If at some point the drug stops working it will be time to move on to something else. A lot of other treatments are out there, particularly in clinical trials.

                            Melanoma managment is not typically about a single therapy, but rather a journey through different approaches. This current approach is just one step

                            Tim–MRF

                            • April 4, 2013 at 8:15 pm
                            Tim–MRF
                            Guest
                              Actually, the situation is a bit more nuanced than this. He will take the drug for as long as it works. The median is about 6 months, but some go much longer. If at some point the drug stops working it will be time to move on to something else. A lot of other treatments are out there, particularly in clinical trials.

                              Melanoma managment is not typically about a single therapy, but rather a journey through different approaches. This current approach is just one step

                              Tim–MRF

                              • April 4, 2013 at 8:15 pm
                              Tim–MRF
                              Guest
                                Actually, the situation is a bit more nuanced than this. He will take the drug for as long as it works. The median is about 6 months, but some go much longer. If at some point the drug stops working it will be time to move on to something else. A lot of other treatments are out there, particularly in clinical trials.

                                Melanoma managment is not typically about a single therapy, but rather a journey through different approaches. This current approach is just one step

                                Tim–MRF

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