Started Temodar
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Started Temodar

› Forums › General Melanoma Community › Started Temodar

  • Post
    • November 7, 2013 at 6:08 am
    DeniseK
    Participant

    So I started Temodar this evening.  I got sick almost immediately.  I think I will take it on an empty stomache or right before I go to bed next time.  I have a call into my gamma knife doctor to confirm they won't do gamma knife again so I can shop around for someone who will.  Basically they are saying that if the temodar doesn't work I don't have any options left.  IL-2 is out due to brain mets.  Dr. Minor says he hasn't had success with IL-2 in people with brain mets because it makes the brain swell and it's counter-productive.  I haven't researched this myself but I trust him as a specialist.  

    I've been told to ask Merck for compassionate use of their PD-1 drug so I guess I'm going to send them a letter and hope they will help me.  

    Has anyone heard of any FDA approvals coming soon?  

    I guess I will know within a week if the temodar is working or not so it would be nice to at least have something to continue my fight.  

    I have done zelboraf, mekinist/tanfinlar, ipi, WBR, SRS, and gamma knife.  Anybody with any suggestions is welcome.

    Thanks so much

    Denise

Viewing 2 reply threads
  • Replies
      • November 7, 2013 at 6:11 am
      DeniseK
      Participant

      I keep hitting the wrong button and post anonymously

        • November 7, 2013 at 5:59 pm
        Owl
        Participant

        Denise,

        I am so sorry to hear that MEK wasn't it, you sounded so encouraged. Please keep on fighting, maybe Temodar will give the right kick, maybe PD1 will be somehow available for you. Maybe you can contact "Locky's Dad" (google him, patient who asks for compassionate use as he failed for a trial) and ask if they have any reponse.

        My thaughts are with you, one of the strongest melanoma fighter I met here.

        All the best, Jenny

        • November 7, 2013 at 7:04 pm
        killmel
        Participant

        Denise,

        I have recently read that  "Lock's Dad" has NOT received  response to get PD1.

        I would contact BMS & MERCK ASAP and get on the list of people requesting compassionate use of PD1.If Nick get PD1 under compassionate use why not you!

        I would also contact Catherine Poole at Melanoma International. Foundation (MIF) and ask for her assistance to reachout to BMS and MERCK. Catherine has many contacts at BMS & Merck.

        Her email is cpoole@melanomainternational.org  telephone number 866-463-6663

        Well Wishes

        MaryJo

        • November 7, 2013 at 7:04 pm
        killmel
        Participant

        Denise,

        I have recently read that  "Lock's Dad" has NOT received  response to get PD1.

        I would contact BMS & MERCK ASAP and get on the list of people requesting compassionate use of PD1.If Nick get PD1 under compassionate use why not you!

        I would also contact Catherine Poole at Melanoma International. Foundation (MIF) and ask for her assistance to reachout to BMS and MERCK. Catherine has many contacts at BMS & Merck.

        Her email is cpoole@melanomainternational.org  telephone number 866-463-6663

        Well Wishes

        MaryJo

        • November 7, 2013 at 7:04 pm
        killmel
        Participant

        Denise,

        I have recently read that  "Lock's Dad" has NOT received  response to get PD1.

        I would contact BMS & MERCK ASAP and get on the list of people requesting compassionate use of PD1.If Nick get PD1 under compassionate use why not you!

        I would also contact Catherine Poole at Melanoma International. Foundation (MIF) and ask for her assistance to reachout to BMS and MERCK. Catherine has many contacts at BMS & Merck.

        Her email is cpoole@melanomainternational.org  telephone number 866-463-6663

        Well Wishes

        MaryJo

        • November 7, 2013 at 5:59 pm
        Owl
        Participant

        Denise,

        I am so sorry to hear that MEK wasn't it, you sounded so encouraged. Please keep on fighting, maybe Temodar will give the right kick, maybe PD1 will be somehow available for you. Maybe you can contact "Locky's Dad" (google him, patient who asks for compassionate use as he failed for a trial) and ask if they have any reponse.

        My thaughts are with you, one of the strongest melanoma fighter I met here.

        All the best, Jenny

        • November 7, 2013 at 5:59 pm
        Owl
        Participant

        Denise,

        I am so sorry to hear that MEK wasn't it, you sounded so encouraged. Please keep on fighting, maybe Temodar will give the right kick, maybe PD1 will be somehow available for you. Maybe you can contact "Locky's Dad" (google him, patient who asks for compassionate use as he failed for a trial) and ask if they have any reponse.

        My thaughts are with you, one of the strongest melanoma fighter I met here.

        All the best, Jenny

        • November 8, 2013 at 6:50 pm
        Janet Lee
        Participant

        Dear Denise,

        I have not been on MPIP for some time, and just now tryiing to catch up. I have no information to help you, but I do want you to know that I think of you often and send positive thoughts and prayers your way. Good luck with the Temodar. And I saw a newer post that gives you some sound information to pursue a request for PD-1. Don't give up. You are such an inspiration. Keep fighting.

        Janet Lee

        • November 8, 2013 at 6:50 pm
        Janet Lee
        Participant

        Dear Denise,

        I have not been on MPIP for some time, and just now tryiing to catch up. I have no information to help you, but I do want you to know that I think of you often and send positive thoughts and prayers your way. Good luck with the Temodar. And I saw a newer post that gives you some sound information to pursue a request for PD-1. Don't give up. You are such an inspiration. Keep fighting.

        Janet Lee

        • November 8, 2013 at 6:50 pm
        Janet Lee
        Participant

        Dear Denise,

        I have not been on MPIP for some time, and just now tryiing to catch up. I have no information to help you, but I do want you to know that I think of you often and send positive thoughts and prayers your way. Good luck with the Temodar. And I saw a newer post that gives you some sound information to pursue a request for PD-1. Don't give up. You are such an inspiration. Keep fighting.

        Janet Lee

      • November 7, 2013 at 6:11 am
      DeniseK
      Participant

      I keep hitting the wrong button and post anonymously

      • November 7, 2013 at 6:11 am
      DeniseK
      Participant

      I keep hitting the wrong button and post anonymously

Viewing 2 reply threads
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