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Zelboraf…. for life?!

Forums General Melanoma Community Zelboraf…. for life?!

  • This topic has 12 replies, 4 voices, and was last updated 13 years ago by Tim–MRF.
  • Post
    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.

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  • Replies
      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.
      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.
        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.

        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.

        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.

      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.
      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

      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

      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

      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

      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

      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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