Brain Met
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Brain Met

› Forums › General Melanoma Community › Brain Met

  • Post
    • December 3, 2013 at 1:16 pm
    eric w
    Participant

    Hi it has been a while since i posted. My wife is 6 months out from completing ipi at UCLA. She just got her scans done and her multiple subcentimeter lung nodules are still stable with one of the nodules showing a 50% decrease. However one brain met was found. They will be doing SRS on it in the next week of two just trying to get thing scheduled. After it is zapped we will reintroduce ipi as she cant do any trials since she does not have measurable disease. My question which i have asked on a few other sites/forums is are there folks out there who have had brain mets that are still here 2, 3, 5 years out. Just looking for something to hang onto here. Thanks

Viewing 20 reply threads
  • Replies
      • December 3, 2013 at 4:09 pm
      Randy437
      Participant

      I had a brain met surgically removed (with followup SRS) 5 1/2 years ago.  I have had brain MRIs every 6 months since and have not had a brain met recurrance.

      • December 3, 2013 at 4:09 pm
      Randy437
      Participant

      I had a brain met surgically removed (with followup SRS) 5 1/2 years ago.  I have had brain MRIs every 6 months since and have not had a brain met recurrance.

        • December 3, 2013 at 4:14 pm
        eric w
        Participant

        Thanks Randy…

        • December 3, 2013 at 4:14 pm
        eric w
        Participant

        Thanks Randy…

        • December 3, 2013 at 8:45 pm
        gostan
        Participant

        I am only 8 & 6 months out from two SRS treatments and 3 months out from WBRT, but my two IPI infusions  that took place 2 & & 5 weeks from the end of the WBRT, and my neurologist is convinced that it was the back to back radiation/IPI treatments that obliterated my multiple brain mets.  Here's hoping for similar results for you.

        • December 3, 2013 at 8:45 pm
        gostan
        Participant

        I am only 8 & 6 months out from two SRS treatments and 3 months out from WBRT, but my two IPI infusions  that took place 2 & & 5 weeks from the end of the WBRT, and my neurologist is convinced that it was the back to back radiation/IPI treatments that obliterated my multiple brain mets.  Here's hoping for similar results for you.

        • December 3, 2013 at 9:20 pm
        eric w
        Participant

        Thanks

        • December 3, 2013 at 9:20 pm
        eric w
        Participant

        Thanks

        • December 3, 2013 at 9:20 pm
        eric w
        Participant

        Thanks

        • December 3, 2013 at 8:45 pm
        gostan
        Participant

        I am only 8 & 6 months out from two SRS treatments and 3 months out from WBRT, but my two IPI infusions  that took place 2 & & 5 weeks from the end of the WBRT, and my neurologist is convinced that it was the back to back radiation/IPI treatments that obliterated my multiple brain mets.  Here's hoping for similar results for you.

        • December 3, 2013 at 4:14 pm
        eric w
        Participant

        Thanks Randy…

      • December 3, 2013 at 4:09 pm
      Randy437
      Participant

      I had a brain met surgically removed (with followup SRS) 5 1/2 years ago.  I have had brain MRIs every 6 months since and have not had a brain met recurrance.

      • December 3, 2013 at 10:11 pm
      awillett1991
      Participant

      Well I am not 2 years but I know people who have survived even longer. I was dx with my first brain met April 2012. Still battling! Just picked up my kids from school and made chili today for 15 people. This is not the time to give up. 

      Amy

      • December 3, 2013 at 10:11 pm
      awillett1991
      Participant

      Well I am not 2 years but I know people who have survived even longer. I was dx with my first brain met April 2012. Still battling! Just picked up my kids from school and made chili today for 15 people. This is not the time to give up. 

      Amy

        • December 4, 2013 at 12:55 am
        eric w
        Participant

        Thanks

        • December 4, 2013 at 12:55 am
        eric w
        Participant

        Thanks

        • December 4, 2013 at 12:55 am
        eric w
        Participant

        Thanks

      • December 3, 2013 at 10:11 pm
      awillett1991
      Participant

      Well I am not 2 years but I know people who have survived even longer. I was dx with my first brain met April 2012. Still battling! Just picked up my kids from school and made chili today for 15 people. This is not the time to give up. 

      Amy

      • December 4, 2013 at 12:20 am
      Brendan
      Participant

      Hi Eric,

      I had my first brain met in June 2012.  Last week's brain MRI was clear.  There are others on the board who have had brain mets for over five years.  Good luck to your wife (and to you).

      Brendan

       

        • December 4, 2013 at 12:59 am
        eric w
        Participant

        Thanks

        • December 4, 2013 at 12:59 am
        eric w
        Participant

        Thanks

        • December 4, 2013 at 12:59 am
        eric w
        Participant

        Thanks

      • December 4, 2013 at 12:20 am
      Brendan
      Participant

      Hi Eric,

      I had my first brain met in June 2012.  Last week's brain MRI was clear.  There are others on the board who have had brain mets for over five years.  Good luck to your wife (and to you).

      Brendan

       

      • December 4, 2013 at 12:20 am
      Brendan
      Participant

      Hi Eric,

      I had my first brain met in June 2012.  Last week's brain MRI was clear.  There are others on the board who have had brain mets for over five years.  Good luck to your wife (and to you).

      Brendan

       

      • December 4, 2013 at 1:26 am
      eric w
      Participant

      Thanks everyone…Just trying to figure all this stuff out. Just looking for some postive reinforcement… Thanks again

      • December 4, 2013 at 1:26 am
      eric w
      Participant

      Thanks everyone…Just trying to figure all this stuff out. Just looking for some postive reinforcement… Thanks again

      • December 4, 2013 at 1:26 am
      eric w
      Participant

      Thanks everyone…Just trying to figure all this stuff out. Just looking for some postive reinforcement… Thanks again

      • December 4, 2013 at 3:29 am
      Janner
      Participant

      Do a search for Carole K.  She's over 10 years out from a brain met and lung mets, I think.  Can't remember all her details but she has a profile you can read.

        • December 4, 2013 at 2:45 pm
        eric w
        Participant

        Thanks Janner

        • December 4, 2013 at 8:21 pm
        Phil S
        Participant

        Eric,   Brain mets are super scary, I was beyond upset when my husband's melanoma spread to his brain in September 2011.  Phil had a craniotomy and WBR radiation, and has been stable in his brain ever since. Of course, he also did 6 rounds of biochemo and TIL, so who really knows what worked where?? All I know is that I never thought we would be celebrating Christmas together as a family, 2 years and 3 months after the brain diagnosis, but we are thrilled at how well Phil is doing!  I wish you and your wife all the best, fighting melanoma is difficult and unpredictable, but so much is still unknown and better and better treatments are being worked on daily. So, keep positive, stay educated, and enjoy every moment with your family!  God bless,  Valerie (Phil's wife)

        • December 4, 2013 at 8:21 pm
        Phil S
        Participant

        Eric,   Brain mets are super scary, I was beyond upset when my husband's melanoma spread to his brain in September 2011.  Phil had a craniotomy and WBR radiation, and has been stable in his brain ever since. Of course, he also did 6 rounds of biochemo and TIL, so who really knows what worked where?? All I know is that I never thought we would be celebrating Christmas together as a family, 2 years and 3 months after the brain diagnosis, but we are thrilled at how well Phil is doing!  I wish you and your wife all the best, fighting melanoma is difficult and unpredictable, but so much is still unknown and better and better treatments are being worked on daily. So, keep positive, stay educated, and enjoy every moment with your family!  God bless,  Valerie (Phil's wife)

        • December 4, 2013 at 8:21 pm
        Phil S
        Participant

        Eric,   Brain mets are super scary, I was beyond upset when my husband's melanoma spread to his brain in September 2011.  Phil had a craniotomy and WBR radiation, and has been stable in his brain ever since. Of course, he also did 6 rounds of biochemo and TIL, so who really knows what worked where?? All I know is that I never thought we would be celebrating Christmas together as a family, 2 years and 3 months after the brain diagnosis, but we are thrilled at how well Phil is doing!  I wish you and your wife all the best, fighting melanoma is difficult and unpredictable, but so much is still unknown and better and better treatments are being worked on daily. So, keep positive, stay educated, and enjoy every moment with your family!  God bless,  Valerie (Phil's wife)

        • December 4, 2013 at 2:45 pm
        eric w
        Participant

        Thanks Janner

        • December 4, 2013 at 2:45 pm
        eric w
        Participant

        Thanks Janner

      • December 4, 2013 at 3:29 am
      Janner
      Participant

      Do a search for Carole K.  She's over 10 years out from a brain met and lung mets, I think.  Can't remember all her details but she has a profile you can read.

      • December 4, 2013 at 3:29 am
      Janner
      Participant

      Do a search for Carole K.  She's over 10 years out from a brain met and lung mets, I think.  Can't remember all her details but she has a profile you can read.

      • December 5, 2013 at 5:36 am
      Ali
      Participant

      Eric, I kind of thought brain mets were the end.  I was very wrong.  They found 25 small tumors in my brain June 2012.  As of September 2012 my brain MRIs have come back clear every time.  I had IPI plus Temodar.  I wonder if they would concider Temodar in her treatment?

        • December 6, 2013 at 4:28 am
        NancyGM
        Participant

        I did Temodar for a met in my mediastinum and have been NED for 7 years. I did not have brain mets, but I know it crosses the blood brain barrier…

        • December 6, 2013 at 4:28 am
        NancyGM
        Participant

        I did Temodar for a met in my mediastinum and have been NED for 7 years. I did not have brain mets, but I know it crosses the blood brain barrier…

        • December 6, 2013 at 4:28 am
        NancyGM
        Participant

        I did Temodar for a met in my mediastinum and have been NED for 7 years. I did not have brain mets, but I know it crosses the blood brain barrier…

      • December 5, 2013 at 5:36 am
      Ali
      Participant

      Eric, I kind of thought brain mets were the end.  I was very wrong.  They found 25 small tumors in my brain June 2012.  As of September 2012 my brain MRIs have come back clear every time.  I had IPI plus Temodar.  I wonder if they would concider Temodar in her treatment?

      • December 5, 2013 at 5:36 am
      Ali
      Participant

      Eric, I kind of thought brain mets were the end.  I was very wrong.  They found 25 small tumors in my brain June 2012.  As of September 2012 my brain MRIs have come back clear every time.  I had IPI plus Temodar.  I wonder if they would concider Temodar in her treatment?

      • December 5, 2013 at 10:03 pm
      delora
      Participant

      Hi Eric,

      I don't have any experience with brain mets…yet, but I totally understand that you need something positive to hang on to.  I have been searching for that for the last two weeks waiting on answers and test results.  I probably have searched way too much on Google and other places.  I have found that this site is fact based with good people, so I am trying to resist the urge to continue to search for things I cannot get the answer for right now.  What seems so positive is the love you obviously have for your wife.  I imagine your strength and encouragement is what she hangs on to.  Good luck to both you and your wife.  I wish you all the best the world has to offer.

      • December 5, 2013 at 10:03 pm
      delora
      Participant

      Hi Eric,

      I don't have any experience with brain mets…yet, but I totally understand that you need something positive to hang on to.  I have been searching for that for the last two weeks waiting on answers and test results.  I probably have searched way too much on Google and other places.  I have found that this site is fact based with good people, so I am trying to resist the urge to continue to search for things I cannot get the answer for right now.  What seems so positive is the love you obviously have for your wife.  I imagine your strength and encouragement is what she hangs on to.  Good luck to both you and your wife.  I wish you all the best the world has to offer.

      • December 5, 2013 at 10:03 pm
      delora
      Participant

      Hi Eric,

      I don't have any experience with brain mets…yet, but I totally understand that you need something positive to hang on to.  I have been searching for that for the last two weeks waiting on answers and test results.  I probably have searched way too much on Google and other places.  I have found that this site is fact based with good people, so I am trying to resist the urge to continue to search for things I cannot get the answer for right now.  What seems so positive is the love you obviously have for your wife.  I imagine your strength and encouragement is what she hangs on to.  Good luck to both you and your wife.  I wish you all the best the world has to offer.

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