Frequency of Gamma Knife posted by Denisek
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Frequency of Gamma Knife posted by Denisek

› Forums › General Melanoma Community › Frequency of Gamma Knife posted by Denisek

  • Post
    • November 6, 2013 at 4:32 am
    DeniseK
    Participant
    Didn’t mean to post anonymously
Viewing 11 reply threads
  • Replies
      • November 6, 2013 at 7:06 am
      JerryfromFauq
      Participant
      • November 6, 2013 at 7:06 am
      JerryfromFauq
      Participant
      • November 6, 2013 at 7:06 am
      JerryfromFauq
      Participant
      • November 6, 2013 at 9:42 pm
      awillett1991
      Participant

      Denise, 

      I'm so sorry you are facing this again.  I don't know about the frequency but you absolutely CAN have gamma knife more than once. I know people who have done it. You are correct, it is WBR that is only once. Keep fighting girl!!

      Amy

      • November 6, 2013 at 9:42 pm
      awillett1991
      Participant

      Denise, 

      I'm so sorry you are facing this again.  I don't know about the frequency but you absolutely CAN have gamma knife more than once. I know people who have done it. You are correct, it is WBR that is only once. Keep fighting girl!!

      Amy

      • November 6, 2013 at 9:42 pm
      awillett1991
      Participant

      Denise, 

      I'm so sorry you are facing this again.  I don't know about the frequency but you absolutely CAN have gamma knife more than once. I know people who have done it. You are correct, it is WBR that is only once. Keep fighting girl!!

      Amy

      • November 7, 2013 at 12:04 am
      killmel
      Participant

      Hi Denise,

      I am so sorry that you got bad news. I know that you are running out of options so may I suggest that you contact BMS or Merck to request "compassionate use" of their PD1 drug.

      We all have read about Nick Auden petitioning BMS & Merck for "compassionate use" of their PD1 drug.

      Here is Nick's website and story:

      http://www.savelockysdad.com/

      I truly believe that your condition/situation is worse than Nick's. There are many people that need PD1 now because they are running out of options.

      You have nothing to loose to contact BMS and  Merck to request "compassionate use" of their PD1 drug.

      I would start my own petition NOW . If BMS or Merck grants Nick their PD1 drug then why not you. I would contact BMS and Merck ASAP.

      I know that your MPIP family would sign your petition.

      Denise, I know that you are a fighter. PD1 compassionate use might be your last Hope!

      Good Luck and I will pray for you.

        • November 7, 2013 at 5:55 am
        DeniseK
        Participant

        I started Temodar tonight.  They are saying this is my last option.  I have a call into the gamma knife doctor to confirm that they won't do gamma knife.  If I have to go somewhere else I will.  I will know in a few days if the temodar works or not I guess it's pretty quick stuff.  I am hoping Anti PD-1 gets FDA approval very soon but I am going to contact them and ask for compassionate use.  I have actually signed Nicks petition and have had several friends sign and share his story.  I am not sure they have granted him use as of yet.

        Thanks you for your  support.

        Denise

        • November 7, 2013 at 3:26 pm
        killmel
        Participant

        Denise,

        Merck has stated that if everything goes well with the approval process the "earliest that the FDA will approve PD-1 will be in 2015.

        I suggest you start your own petition ASAP. Your case is just as dire as Nick's case, if not more. Nick just had brain surgery and doing well according to his website.

        If Nick is given PD1 under compassionate use, you want to be on Merck list of people requesting "compassionate use" so that you can get the drug ASAP!

        God Bless you.

         

        • November 7, 2013 at 3:26 pm
        killmel
        Participant

        Denise,

        Merck has stated that if everything goes well with the approval process the "earliest that the FDA will approve PD-1 will be in 2015.

        I suggest you start your own petition ASAP. Your case is just as dire as Nick's case, if not more. Nick just had brain surgery and doing well according to his website.

        If Nick is given PD1 under compassionate use, you want to be on Merck list of people requesting "compassionate use" so that you can get the drug ASAP!

        God Bless you.

         

        • November 7, 2013 at 3:26 pm
        killmel
        Participant

        Denise,

        Merck has stated that if everything goes well with the approval process the "earliest that the FDA will approve PD-1 will be in 2015.

        I suggest you start your own petition ASAP. Your case is just as dire as Nick's case, if not more. Nick just had brain surgery and doing well according to his website.

        If Nick is given PD1 under compassionate use, you want to be on Merck list of people requesting "compassionate use" so that you can get the drug ASAP!

        God Bless you.

         

        • November 7, 2013 at 5:55 am
        DeniseK
        Participant

        I started Temodar tonight.  They are saying this is my last option.  I have a call into the gamma knife doctor to confirm that they won't do gamma knife.  If I have to go somewhere else I will.  I will know in a few days if the temodar works or not I guess it's pretty quick stuff.  I am hoping Anti PD-1 gets FDA approval very soon but I am going to contact them and ask for compassionate use.  I have actually signed Nicks petition and have had several friends sign and share his story.  I am not sure they have granted him use as of yet.

        Thanks you for your  support.

        Denise

        • November 7, 2013 at 5:55 am
        DeniseK
        Participant

        I started Temodar tonight.  They are saying this is my last option.  I have a call into the gamma knife doctor to confirm that they won't do gamma knife.  If I have to go somewhere else I will.  I will know in a few days if the temodar works or not I guess it's pretty quick stuff.  I am hoping Anti PD-1 gets FDA approval very soon but I am going to contact them and ask for compassionate use.  I have actually signed Nicks petition and have had several friends sign and share his story.  I am not sure they have granted him use as of yet.

        Thanks you for your  support.

        Denise

      • November 7, 2013 at 12:04 am
      killmel
      Participant

      Hi Denise,

      I am so sorry that you got bad news. I know that you are running out of options so may I suggest that you contact BMS or Merck to request "compassionate use" of their PD1 drug.

      We all have read about Nick Auden petitioning BMS & Merck for "compassionate use" of their PD1 drug.

      Here is Nick's website and story:

      http://www.savelockysdad.com/

      I truly believe that your condition/situation is worse than Nick's. There are many people that need PD1 now because they are running out of options.

      You have nothing to loose to contact BMS and  Merck to request "compassionate use" of their PD1 drug.

      I would start my own petition NOW . If BMS or Merck grants Nick their PD1 drug then why not you. I would contact BMS and Merck ASAP.

      I know that your MPIP family would sign your petition.

      Denise, I know that you are a fighter. PD1 compassionate use might be your last Hope!

      Good Luck and I will pray for you.

      • November 7, 2013 at 12:04 am
      killmel
      Participant

      Hi Denise,

      I am so sorry that you got bad news. I know that you are running out of options so may I suggest that you contact BMS or Merck to request "compassionate use" of their PD1 drug.

      We all have read about Nick Auden petitioning BMS & Merck for "compassionate use" of their PD1 drug.

      Here is Nick's website and story:

      http://www.savelockysdad.com/

      I truly believe that your condition/situation is worse than Nick's. There are many people that need PD1 now because they are running out of options.

      You have nothing to loose to contact BMS and  Merck to request "compassionate use" of their PD1 drug.

      I would start my own petition NOW . If BMS or Merck grants Nick their PD1 drug then why not you. I would contact BMS and Merck ASAP.

      I know that your MPIP family would sign your petition.

      Denise, I know that you are a fighter. PD1 compassionate use might be your last Hope!

      Good Luck and I will pray for you.

      • November 7, 2013 at 8:27 pm
      aldakota22
      Participant

      Denise, You do everything you can to get the treatment you need.post a petition and myself and so many more will sign it.Praying that your new drug works as expected.beat the Beast.      Al

      • November 7, 2013 at 8:27 pm
      aldakota22
      Participant

      Denise, You do everything you can to get the treatment you need.post a petition and myself and so many more will sign it.Praying that your new drug works as expected.beat the Beast.      Al

      • November 7, 2013 at 8:27 pm
      aldakota22
      Participant

      Denise, You do everything you can to get the treatment you need.post a petition and myself and so many more will sign it.Praying that your new drug works as expected.beat the Beast.      Al

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