Zelboraf and metastatic melanoma

Forums General Melanoma Community Zelboraf and metastatic melanoma

  • Post
    remjgg38
    Participant

      I was diagnosed in 1984 with a stage IV melanoma on my back and had it excised.  Then again in 1991 another showed up and I had it excised.  There were no other occurrences until April 2011 when I noticed a lump in my left armpit.  I realize that this is an incredibly long time for melanoma to remain dormant but my doctor said that it has been known to do this.  They did a biopsy on it and it was a stage 4 melanoma so they did surgery and removed most of the lymph nodes in that area.  Pet scans have shown that there are other spots in this area now and my doctor wan

      I was diagnosed in 1984 with a stage IV melanoma on my back and had it excised.  Then again in 1991 another showed up and I had it excised.  There were no other occurrences until April 2011 when I noticed a lump in my left armpit.  I realize that this is an incredibly long time for melanoma to remain dormant but my doctor said that it has been known to do this.  They did a biopsy on it and it was a stage 4 melanoma so they did surgery and removed most of the lymph nodes in that area.  Pet scans have shown that there are other spots in this area now and my doctor wants to put me on Zelboraf.  Has anyone else had anything like this, and I am wondering about the effectiveness of this new drug.  Thanks.

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    • Replies
        lhaley
        Participant

          I think originally in 1984 you might have been Clark's level 4, but now stage IV.  Many are often confusing with that.  But, in 1979 mine was originally a Clark's level and in 06 went to stage IV.  As difficult it is to realize that the cancer cell just sat there and waited to attack, it does happen.    The better news is at least now there are more options.

          Before there are thoughts on doing Zelboraf you need to let us know more information.  If you are B-raf positive this drug works for many, however it is not known for your body to continue for long before the pathway becomes compromised.  If you have lower tumor burdens you might look into something else first such as Yervoy.  

          Do you go to a melanoma oncologist that might give you more options right now?  I have found that my local oncologist seems to always comment to put me on Zelboraf immediately only because this was available when instead last year I had surgery and that area is now free from those nodes.  Think through your options.

          Linda

          brain met is shrinking!! 

          lhaley
          Participant

            I think originally in 1984 you might have been Clark's level 4, but now stage IV.  Many are often confusing with that.  But, in 1979 mine was originally a Clark's level and in 06 went to stage IV.  As difficult it is to realize that the cancer cell just sat there and waited to attack, it does happen.    The better news is at least now there are more options.

            Before there are thoughts on doing Zelboraf you need to let us know more information.  If you are B-raf positive this drug works for many, however it is not known for your body to continue for long before the pathway becomes compromised.  If you have lower tumor burdens you might look into something else first such as Yervoy.  

            Do you go to a melanoma oncologist that might give you more options right now?  I have found that my local oncologist seems to always comment to put me on Zelboraf immediately only because this was available when instead last year I had surgery and that area is now free from those nodes.  Think through your options.

            Linda

            brain met is shrinking!! 

            lhaley
            Participant

              I think originally in 1984 you might have been Clark's level 4, but now stage IV.  Many are often confusing with that.  But, in 1979 mine was originally a Clark's level and in 06 went to stage IV.  As difficult it is to realize that the cancer cell just sat there and waited to attack, it does happen.    The better news is at least now there are more options.

              Before there are thoughts on doing Zelboraf you need to let us know more information.  If you are B-raf positive this drug works for many, however it is not known for your body to continue for long before the pathway becomes compromised.  If you have lower tumor burdens you might look into something else first such as Yervoy.  

              Do you go to a melanoma oncologist that might give you more options right now?  I have found that my local oncologist seems to always comment to put me on Zelboraf immediately only because this was available when instead last year I had surgery and that area is now free from those nodes.  Think through your options.

              Linda

              brain met is shrinking!! 

              Janner
              Participant

                Linda is right, you probably had Clark's Level IV lesions.  (Stage IV means it is in your organs or has distant spread).  But it appears your melanoma is still in the same area where they removed the lymph nodes?  This implies to me that it is still local to the nearest lymph node basin which means stage III, not stage IV.  If the "spots" cannot be removed by surgery, then you probably have "stage III unresectable" melanoma.  Zelboraf isn't approved for stage III unless the lesions are unresectable.  However, there are also other options besides zelboraf for you.  Yervoy (Ipilimumab) is also a newly approved drug which might be an option for you.  IL-2 as well.  You might consider clinical trials as well.  However, you really need to have your acurate staging before you can go to clinicaltrials.gov and see what other options are available.  I would also suggest getting a second opinion from another melanoma specialist.  It never hurts to hear more than one option and opinion.  Do your own research on overall survival of these drugs, side effects, and the rest to see which drugs seems best for YOU.  Doctors tend to offer what they are comfortable with, but it doesn't mean you can't do your own research and find what drug (and doctor) you think makes the most sense to you!

                Best wishes,

                Janner

                Janner
                Participant

                  Linda is right, you probably had Clark's Level IV lesions.  (Stage IV means it is in your organs or has distant spread).  But it appears your melanoma is still in the same area where they removed the lymph nodes?  This implies to me that it is still local to the nearest lymph node basin which means stage III, not stage IV.  If the "spots" cannot be removed by surgery, then you probably have "stage III unresectable" melanoma.  Zelboraf isn't approved for stage III unless the lesions are unresectable.  However, there are also other options besides zelboraf for you.  Yervoy (Ipilimumab) is also a newly approved drug which might be an option for you.  IL-2 as well.  You might consider clinical trials as well.  However, you really need to have your acurate staging before you can go to clinicaltrials.gov and see what other options are available.  I would also suggest getting a second opinion from another melanoma specialist.  It never hurts to hear more than one option and opinion.  Do your own research on overall survival of these drugs, side effects, and the rest to see which drugs seems best for YOU.  Doctors tend to offer what they are comfortable with, but it doesn't mean you can't do your own research and find what drug (and doctor) you think makes the most sense to you!

                  Best wishes,

                  Janner

                  Janner
                  Participant

                    Linda is right, you probably had Clark's Level IV lesions.  (Stage IV means it is in your organs or has distant spread).  But it appears your melanoma is still in the same area where they removed the lymph nodes?  This implies to me that it is still local to the nearest lymph node basin which means stage III, not stage IV.  If the "spots" cannot be removed by surgery, then you probably have "stage III unresectable" melanoma.  Zelboraf isn't approved for stage III unless the lesions are unresectable.  However, there are also other options besides zelboraf for you.  Yervoy (Ipilimumab) is also a newly approved drug which might be an option for you.  IL-2 as well.  You might consider clinical trials as well.  However, you really need to have your acurate staging before you can go to clinicaltrials.gov and see what other options are available.  I would also suggest getting a second opinion from another melanoma specialist.  It never hurts to hear more than one option and opinion.  Do your own research on overall survival of these drugs, side effects, and the rest to see which drugs seems best for YOU.  Doctors tend to offer what they are comfortable with, but it doesn't mean you can't do your own research and find what drug (and doctor) you think makes the most sense to you!

                    Best wishes,

                    Janner

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