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Father with Brain Mets, WBR will be completed Friday, what’s next

Forums General Melanoma Community Father with Brain Mets, WBR will be completed Friday, what’s next

  • Post
    ADSCLT
    Participant

    Hi Everyone,

     

    Hi Everyone,

     

    I've been reading post often since my father was diagnosed in November, 2010.  We recently found out he has 6 brain mets, most are small but one is larger located on his brain stem.  It caused his eyes to cross and his vision is very blurred.  His last WBR is tomorrow.  We also see the Chemo doctor for the first time tomorrow to find out our options.  I have no idea what to ask.  I've researched RG7204, IPI, and other treatments.  I don't know what my dad will qualify to take.  Any advise will be appreciated.  We are in Charlotte, NC.  Thank you.

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  • Replies
      MichaelFL
      Participant

      I am not sure if cyber knile is a option for the smaller ones at this point. Maybe discuss that.

      If your father BRAF positive? I am also not sure if he will be able to get on the RG7204 (plx4032 trials) as I do not believe the drug crosses the BBB (blood brain barrier) . I believe having brain mets will disqualify him from this trial, never hurts to ask though.

      You may wish to discuss the GSK drug instead as I believe it does cross the BBB.

      Here is a link to some GSK trials you can check on.

      http://www.clinicaltrial.gov/ct2/results?term=melanoma+gsk&recr=Open

      Here is one you may find interesting: A Study of GSK2118436 in BRAF Mutatant Metastatic Melanoma to the Brain

      http://www.clinicaltrial.gov/ct2/show/NCT01266967?term=melanoma+gsk+brain&rank=1

      You may also wish to ask about ipi which is now called Yervoy, and was approved by the FDA on 3/25/11. I believe it can also be used for brain mets.

      Also discuss Temodar, it crosses the BBB, and I am not sure if IL-2 may be a consideration at this point.

      All things you may discuss, and maybe someone else will chime in too!

      Good luck,

      Michael

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        ADSCLT
        Participant

        I asked his Radiation doctor and he said hasn't been tested to see if he is BRAF positive.  Everything I read says he probably should have been tested.  Can you do WBR and start IPI at the same time?  Or do we have to wait after the WBR before starting any clinical trials?

         

        thanks!

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        ADSCLT
        Participant

        I asked his Radiation doctor and he said hasn't been tested to see if he is BRAF positive.  Everything I read says he probably should have been tested.  Can you do WBR and start IPI at the same time?  Or do we have to wait after the WBR before starting any clinical trials?

         

        thanks!

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      MichaelFL
      Participant

      I am not sure if cyber knile is a option for the smaller ones at this point. Maybe discuss that.

      If your father BRAF positive? I am also not sure if he will be able to get on the RG7204 (plx4032 trials) as I do not believe the drug crosses the BBB (blood brain barrier) . I believe having brain mets will disqualify him from this trial, never hurts to ask though.

      You may wish to discuss the GSK drug instead as I believe it does cross the BBB.

      Here is a link to some GSK trials you can check on.

      http://www.clinicaltrial.gov/ct2/results?term=melanoma+gsk&recr=Open

      Here is one you may find interesting: A Study of GSK2118436 in BRAF Mutatant Metastatic Melanoma to the Brain

      http://www.clinicaltrial.gov/ct2/show/NCT01266967?term=melanoma+gsk+brain&rank=1

      You may also wish to ask about ipi which is now called Yervoy, and was approved by the FDA on 3/25/11. I believe it can also be used for brain mets.

      Also discuss Temodar, it crosses the BBB, and I am not sure if IL-2 may be a consideration at this point.

      All things you may discuss, and maybe someone else will chime in too!

      Good luck,

      Michael

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      lhaley
      Participant

      I looked at your profile and see that you go to Carolina Medical Center.  I also go there. I see both Amin and White, depending on my need.  I have found that Amin is very willing to discuss clinical trials that they do not offer. Take the list that Michael has offered with you and ask!  I do know that they have an IL2 unit there and did have Ipi on the compassionate care basis, therefore they are knowledgable about it. They have had several Ipi trials in the past few years.   They told me on a recent visit about a trial that they have seen some success with but you have to have the positive HLA which I don't.

      Their nurses are sweethearts!  If you ever have any questions they are there for you. Sandy (Dr. White's nurse) is by far my favorite.

      Let us know how it goes tomorrow!

      Linda

      Stage IV since 06 stable

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        ADSCLT
        Participant

        Thanks so much Linda and Michael.  I am very thankful for all your help!  Linda, we are seeing Doctor Amin tomorrow.  Glad to know he is good. :)  I'll definitely post how is goes.

        Thanks again!

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        ADSCLT
        Participant

        Thanks so much Linda and Michael.  I am very thankful for all your help!  Linda, we are seeing Doctor Amin tomorrow.  Glad to know he is good. :)  I'll definitely post how is goes.

        Thanks again!

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        ADSCLT
        Participant

        Thanks so much Linda and Michael.  I am very thankful for all your help!  Linda, we are seeing Doctor Amin tomorrow.  Glad to know he is good. :)  I'll definitely post how is goes.

        Thanks again!

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        ADSCLT
        Participant

        Thanks so much Linda and Michael.  I am very thankful for all your help!  Linda, we are seeing Doctor Amin tomorrow.  Glad to know he is good. :)  I'll definitely post how is goes.

        Thanks again!

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      lhaley
      Participant

      I looked at your profile and see that you go to Carolina Medical Center.  I also go there. I see both Amin and White, depending on my need.  I have found that Amin is very willing to discuss clinical trials that they do not offer. Take the list that Michael has offered with you and ask!  I do know that they have an IL2 unit there and did have Ipi on the compassionate care basis, therefore they are knowledgable about it. They have had several Ipi trials in the past few years.   They told me on a recent visit about a trial that they have seen some success with but you have to have the positive HLA which I don't.

      Their nurses are sweethearts!  If you ever have any questions they are there for you. Sandy (Dr. White's nurse) is by far my favorite.

      Let us know how it goes tomorrow!

      Linda

      Stage IV since 06 stable

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