Radiation on Monday, 2 new brain tumors
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Radiation on Monday, 2 new brain tumors

› Forums › General Melanoma Community › Radiation on Monday, 2 new brain tumors

  • Post
    • June 15, 2012 at 3:44 am
    lhaley
    Participant

    Two weeks ago it was discovered that I had 1 new brain met (original was a little more than 2.6cm) and it was small at 3mm.  Yesterday I went in for brain mapping and was shocked to find out not only had this one grown but a new brain met has shown up.  On Monday I will be having SRS for both small mets.

    Two weeks ago it was discovered that I had 1 new brain met (original was a little more than 2.6cm) and it was small at 3mm.  Yesterday I went in for brain mapping and was shocked to find out not only had this one grown but a new brain met has shown up.  On Monday I will be having SRS for both small mets. My oncologist wanted me into a trial for brain tumors with b-raf – it's the trial that James from Sydney has posted about it.  I have decided to stick with the radiation for now and hoping that I don't have to use the drug, I wish that the trial allowed for both the radiation and then the drug.   

    In a little more than 2 weeks I will be celebrating my 6th year as stage IV.  This year has been the most stressful year of them all. 

    Linda

Viewing 20 reply threads
  • Replies
      • June 15, 2012 at 4:09 am
      King
      Participant

      I hate melanoma!  You have been in a constant battle.  Just continue to fight, fight, fight.  You and your family will be in my thoughts and prayers.  It is so difficult to make treatment decisions but I know you do your homework/research and pick what you think will be the best for you.  That final decision is always up to you.  I'm so sorry, Linda.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

      • June 15, 2012 at 4:09 am
      King
      Participant

      I hate melanoma!  You have been in a constant battle.  Just continue to fight, fight, fight.  You and your family will be in my thoughts and prayers.  It is so difficult to make treatment decisions but I know you do your homework/research and pick what you think will be the best for you.  That final decision is always up to you.  I'm so sorry, Linda.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

        • June 15, 2012 at 5:21 am
        deardad
        Participant

        Sorry Linda to hear that news, my dad too is fighting brain mets and just finished WBR. It's such a stressful time, but as King said, fight and keep fighting, you're a survivor.

        Nahmi

        • June 15, 2012 at 5:21 am
        deardad
        Participant

        Sorry Linda to hear that news, my dad too is fighting brain mets and just finished WBR. It's such a stressful time, but as King said, fight and keep fighting, you're a survivor.

        Nahmi

        • June 15, 2012 at 5:21 am
        deardad
        Participant

        Sorry Linda to hear that news, my dad too is fighting brain mets and just finished WBR. It's such a stressful time, but as King said, fight and keep fighting, you're a survivor.

        Nahmi

      • June 15, 2012 at 4:09 am
      King
      Participant

      I hate melanoma!  You have been in a constant battle.  Just continue to fight, fight, fight.  You and your family will be in my thoughts and prayers.  It is so difficult to make treatment decisions but I know you do your homework/research and pick what you think will be the best for you.  That final decision is always up to you.  I'm so sorry, Linda.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

      • June 15, 2012 at 5:34 am
      hope4cure1
      Participant

      Linda,  I have come to admire and care about you because of your courage, determination and support for everyone in this battle.  It is that very strength that will carry through your current challenge.  You have made wise decisions, and have 6 years at stage !V to celebrate.  You can, once again, trust your decision wholeheartedly and with confidence.  Please know that I'm keeping you close in my thoughts and prayers.

      Hope

      • June 15, 2012 at 5:34 am
      hope4cure1
      Participant

      Linda,  I have come to admire and care about you because of your courage, determination and support for everyone in this battle.  It is that very strength that will carry through your current challenge.  You have made wise decisions, and have 6 years at stage !V to celebrate.  You can, once again, trust your decision wholeheartedly and with confidence.  Please know that I'm keeping you close in my thoughts and prayers.

      Hope

      • June 15, 2012 at 5:34 am
      hope4cure1
      Participant

      Linda,  I have come to admire and care about you because of your courage, determination and support for everyone in this battle.  It is that very strength that will carry through your current challenge.  You have made wise decisions, and have 6 years at stage !V to celebrate.  You can, once again, trust your decision wholeheartedly and with confidence.  Please know that I'm keeping you close in my thoughts and prayers.

      Hope

      • June 15, 2012 at 6:11 am
      AllyNTAus
      Participant

      Linda, wishing you all the best for your radiation.

      Regarding the BRAF inhibitor, can you talk to your oncologist about possible compassionate access to Dabrafenib? This is the GSK version of the BRAF inhibitor that has shown some impressive results on a small study group of patients with brain mets.

      I failed entry to the GSK BRAF/MEK inhibitor trial because of some pneumonitis, but I was still granted compassionate access to Dabrafenib. I under the team at Westmead Hospital in Sydney, and my doctor there is really positive about what Dabrafenib can do. I am also not finding any major side effects from it, it is way better than Zelboraf in terms of side effects from what I see on here about Zelboraf. So don't be afraid to look further into this if you want to after your radiation.

      • June 15, 2012 at 6:11 am
      AllyNTAus
      Participant

      Linda, wishing you all the best for your radiation.

      Regarding the BRAF inhibitor, can you talk to your oncologist about possible compassionate access to Dabrafenib? This is the GSK version of the BRAF inhibitor that has shown some impressive results on a small study group of patients with brain mets.

      I failed entry to the GSK BRAF/MEK inhibitor trial because of some pneumonitis, but I was still granted compassionate access to Dabrafenib. I under the team at Westmead Hospital in Sydney, and my doctor there is really positive about what Dabrafenib can do. I am also not finding any major side effects from it, it is way better than Zelboraf in terms of side effects from what I see on here about Zelboraf. So don't be afraid to look further into this if you want to after your radiation.

        • June 15, 2012 at 7:16 am
        deardad
        Participant

        Hi Ally just wondering if my dad would be eligible for Dabrafenib since he became resistant to Zelboraf and now has brain mets? He had not had a MEK inhbibitor yet? Thanks in advance.

        Nahmi from Melbourne

        • June 15, 2012 at 7:16 am
        deardad
        Participant

        Hi Ally just wondering if my dad would be eligible for Dabrafenib since he became resistant to Zelboraf and now has brain mets? He had not had a MEK inhbibitor yet? Thanks in advance.

        Nahmi from Melbourne

        • June 15, 2012 at 2:34 pm
        AllyNTAus
        Participant
        Nahmi, I really don’t know. I am under Prof Rick Kefford’s team at Westmead, that includes Dr Georgina Long who recently published the early study results on Dabrafenib and brain mets. I believe that as a result of that early trial, there is now a proposed further trial of Dabrafenib for people with brain mets. I just did some searching but can’t find a listing for such a trial so maybe it is not established yet, or I might be recalling incorrectly. Anyway if you can somehow make contact with Dr Long you might be able to get some further information. Sending you and your dad very best wishes
        Ally
        • June 15, 2012 at 2:34 pm
        AllyNTAus
        Participant
        Nahmi, I really don’t know. I am under Prof Rick Kefford’s team at Westmead, that includes Dr Georgina Long who recently published the early study results on Dabrafenib and brain mets. I believe that as a result of that early trial, there is now a proposed further trial of Dabrafenib for people with brain mets. I just did some searching but can’t find a listing for such a trial so maybe it is not established yet, or I might be recalling incorrectly. Anyway if you can somehow make contact with Dr Long you might be able to get some further information. Sending you and your dad very best wishes
        Ally
        • June 15, 2012 at 2:34 pm
        AllyNTAus
        Participant
        Nahmi, I really don’t know. I am under Prof Rick Kefford’s team at Westmead, that includes Dr Georgina Long who recently published the early study results on Dabrafenib and brain mets. I believe that as a result of that early trial, there is now a proposed further trial of Dabrafenib for people with brain mets. I just did some searching but can’t find a listing for such a trial so maybe it is not established yet, or I might be recalling incorrectly. Anyway if you can somehow make contact with Dr Long you might be able to get some further information. Sending you and your dad very best wishes
        Ally
        • June 15, 2012 at 6:07 pm
        LynnLuc
        Participant

        I was looking at the trials using Dabrafenib it they all have "

        Exclusion Criteria:

        • Any prior use of a BRAF or MEK inhibitor"
        • June 15, 2012 at 6:07 pm
        LynnLuc
        Participant

        I was looking at the trials using Dabrafenib it they all have "

        Exclusion Criteria:

        • Any prior use of a BRAF or MEK inhibitor"
        • June 15, 2012 at 6:07 pm
        LynnLuc
        Participant

        I was looking at the trials using Dabrafenib it they all have "

        Exclusion Criteria:

        • Any prior use of a BRAF or MEK inhibitor"
        • June 15, 2012 at 7:16 am
        deardad
        Participant

        Hi Ally just wondering if my dad would be eligible for Dabrafenib since he became resistant to Zelboraf and now has brain mets? He had not had a MEK inhbibitor yet? Thanks in advance.

        Nahmi from Melbourne

      • June 15, 2012 at 6:11 am
      AllyNTAus
      Participant

      Linda, wishing you all the best for your radiation.

      Regarding the BRAF inhibitor, can you talk to your oncologist about possible compassionate access to Dabrafenib? This is the GSK version of the BRAF inhibitor that has shown some impressive results on a small study group of patients with brain mets.

      I failed entry to the GSK BRAF/MEK inhibitor trial because of some pneumonitis, but I was still granted compassionate access to Dabrafenib. I under the team at Westmead Hospital in Sydney, and my doctor there is really positive about what Dabrafenib can do. I am also not finding any major side effects from it, it is way better than Zelboraf in terms of side effects from what I see on here about Zelboraf. So don't be afraid to look further into this if you want to after your radiation.

      • June 15, 2012 at 3:11 pm
      jag
      Participant

      Good Luck Linda!

      • June 15, 2012 at 3:11 pm
      jag
      Participant

      Good Luck Linda!

        • June 15, 2012 at 3:38 pm
        Karin L
        Participant

        Linda, you are so strong and  you have many warriors here that you keep strong.  Fight again, and we will fight along with you by prayer!

        Karin

        • June 15, 2012 at 3:38 pm
        Karin L
        Participant

        Linda, you are so strong and  you have many warriors here that you keep strong.  Fight again, and we will fight along with you by prayer!

        Karin

        • June 15, 2012 at 3:38 pm
        Karin L
        Participant

        Linda, you are so strong and  you have many warriors here that you keep strong.  Fight again, and we will fight along with you by prayer!

        Karin

      • June 15, 2012 at 3:11 pm
      jag
      Participant

      Good Luck Linda!

      • June 15, 2012 at 6:13 pm
      lhaley
      Participant

      The dabrafenab is a trial that is being offered in Charlotte with my Dr. He has offered this to me and has tried to convince me to enter the trial.  The problem is I would have to then turn down the radiation and want to try this first.  Just trying to give myself more time by using the radiation as long as I can and then go to the dabrafenab. 

      Thank you everyone

      Linda

      • June 15, 2012 at 6:13 pm
      lhaley
      Participant

      The dabrafenab is a trial that is being offered in Charlotte with my Dr. He has offered this to me and has tried to convince me to enter the trial.  The problem is I would have to then turn down the radiation and want to try this first.  Just trying to give myself more time by using the radiation as long as I can and then go to the dabrafenab. 

      Thank you everyone

      Linda

      • June 15, 2012 at 6:13 pm
      lhaley
      Participant

      The dabrafenab is a trial that is being offered in Charlotte with my Dr. He has offered this to me and has tried to convince me to enter the trial.  The problem is I would have to then turn down the radiation and want to try this first.  Just trying to give myself more time by using the radiation as long as I can and then go to the dabrafenab. 

      Thank you everyone

      Linda

      • June 15, 2012 at 6:41 pm
      vivian
      Participant

      Hey Linda,

      I will be thinking of you and holding you in the light,  just as I always do!  You are my melanoma hero!

      Lear

      • June 15, 2012 at 6:41 pm
      vivian
      Participant

      Hey Linda,

      I will be thinking of you and holding you in the light,  just as I always do!  You are my melanoma hero!

      Lear

        • June 15, 2012 at 9:58 pm
        NYKaren
        Participant
        Dear Linda,
        You’ve been through so damn much and now you have this to deal with. You’ve been so strong and brave and supportive of all of us. I think about you all the time.
        I’ll be thinking of you on Monday. Please let us know how it goes when you feel up to it.
        Love ya,
        karen
        • June 15, 2012 at 9:58 pm
        NYKaren
        Participant
        Dear Linda,
        You’ve been through so damn much and now you have this to deal with. You’ve been so strong and brave and supportive of all of us. I think about you all the time.
        I’ll be thinking of you on Monday. Please let us know how it goes when you feel up to it.
        Love ya,
        karen
        • June 15, 2012 at 9:58 pm
        NYKaren
        Participant
        Dear Linda,
        You’ve been through so damn much and now you have this to deal with. You’ve been so strong and brave and supportive of all of us. I think about you all the time.
        I’ll be thinking of you on Monday. Please let us know how it goes when you feel up to it.
        Love ya,
        karen
      • June 15, 2012 at 6:41 pm
      vivian
      Participant

      Hey Linda,

      I will be thinking of you and holding you in the light,  just as I always do!  You are my melanoma hero!

      Lear

      • June 18, 2012 at 9:22 pm
      TSchulz
      Participant

      Linda, 

      I hope the radiation went well today and you are recovering nicely. I hope you get a long, long break from dealing with mel.  All the best fellow fighter.  Troy

      • June 18, 2012 at 9:22 pm
      TSchulz
      Participant

      Linda, 

      I hope the radiation went well today and you are recovering nicely. I hope you get a long, long break from dealing with mel.  All the best fellow fighter.  Troy

      • June 18, 2012 at 9:22 pm
      TSchulz
      Participant

      Linda, 

      I hope the radiation went well today and you are recovering nicely. I hope you get a long, long break from dealing with mel.  All the best fellow fighter.  Troy

Viewing 20 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.