Leptomeningeal disease
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Leptomeningeal disease

› Forums › General Melanoma Community › Leptomeningeal disease

  • Post
    • December 23, 2011 at 11:11 am
    davidfromsingapore
    Participant

    All signs point to leptomeningeal disease for me.  Bad head aches, back pain, problems with hearining and vision.  Trying to stay positive though.  If there are any patients out there with LMD I'd love to hear from you.  I am about 1 week into Zelboraf.  So far  no major issues.  I am stage 4 with 2 mets removed via craniotomy and one via Novalia.  So far no body mets.  

     

    All signs point to leptomeningeal disease for me.  Bad head aches, back pain, problems with hearining and vision.  Trying to stay positive though.  If there are any patients out there with LMD I'd love to hear from you.  I am about 1 week into Zelboraf.  So far  no major issues.  I am stage 4 with 2 mets removed via craniotomy and one via Novalia.  So far no body mets.  

     

    While I am somewhat new to the board (I visited in 2008) – I am looking to bring hope to other patients and wish to find hope and strength through you.  While I am not a church going kind of guy, I am very spiritual and will be sending thoughts and prayers to all of you and your families who are suffereing in this holiday season.   

     

    Peace, David

Viewing 8 reply threads
  • Replies
      • December 24, 2011 at 4:11 am
      KatyWI
      Participant

      Hi David,

      Lepto warriors are few and far between.  Besides you and me, I only know of Amy, who we lost this year.

      I am asymptomatic but with documented progression and trying to figure out what to do next.  I have an opportunity for a trial, but it will be very delayed, so I am pondering Temodar.  I'm BRAF wild-type.  I hope Zelboraf gives you some symptom relief.

      KatyWI

        • December 25, 2011 at 8:43 am
        davidfromsingapore
        Participant

        Hi KatyWI

         

        Thank you so much for your reply.  I wish you the best and I hope that you have a very happy holiday season.  Please let me know if there is anything I can do to help you.  I am BFAR positive.  My diagnosis of leptomeningeal right now is presumptive – meaning they are not 100% sure as they are basing their conclusion purly on symptoms.  May I ask how your docs know that you have lepomeningeal?  Was there a certain test they did? For me, It will be interesting to know if Zelboraf crosses the brain barrier.  I have heard both sides – but I will be sure to let you know how it works.  The headaches and the confusion and the sensitivity to light and sound are very difficult.  I am a teacher and had hoped to be back in school by now, but I see that this was very over optimistic on my part.  Please let's keep in touch. 

         

        Sincerely, David

        • December 25, 2011 at 8:43 am
        davidfromsingapore
        Participant

        Hi KatyWI

         

        Thank you so much for your reply.  I wish you the best and I hope that you have a very happy holiday season.  Please let me know if there is anything I can do to help you.  I am BFAR positive.  My diagnosis of leptomeningeal right now is presumptive – meaning they are not 100% sure as they are basing their conclusion purly on symptoms.  May I ask how your docs know that you have lepomeningeal?  Was there a certain test they did? For me, It will be interesting to know if Zelboraf crosses the brain barrier.  I have heard both sides – but I will be sure to let you know how it works.  The headaches and the confusion and the sensitivity to light and sound are very difficult.  I am a teacher and had hoped to be back in school by now, but I see that this was very over optimistic on my part.  Please let's keep in touch. 

         

        Sincerely, David

        • December 26, 2011 at 4:08 pm
        KatyWI
        Participant

        David, my dx was made based on them being able to see crud growing in the ventricles of my brain on MRI.

        Good luck with Zelboraf; I do believe it crosses the bbb.  There was/is a BRAF brain trial, and I believe NicOz was on it.  BRAF helped her, although it was a fleeting effect as resistance developed. 

        Katy

        • December 26, 2011 at 4:08 pm
        KatyWI
        Participant

        David, my dx was made based on them being able to see crud growing in the ventricles of my brain on MRI.

        Good luck with Zelboraf; I do believe it crosses the bbb.  There was/is a BRAF brain trial, and I believe NicOz was on it.  BRAF helped her, although it was a fleeting effect as resistance developed. 

        Katy

        • January 12, 2012 at 1:39 am
        fdess056
        Participant

        Hi, Katy .  I was just responding to David when I decided to look at your profile  What an inspiring story.  I've run 9 marathons including New York 3 times.  Once as a guide for  a Special Olympics athlete.   I also mountain bike and always wanted to do a tri but i can't swim!    I'm presently back to running after over a year off due to surgery and Interferon.  I hope to be able to run another marathon in the spring.  Mel may be trying to kill me but it won't stop me from living  You are in my thoughts.

        frankd brooklyn

        • January 12, 2012 at 1:39 am
        fdess056
        Participant

        Hi, Katy .  I was just responding to David when I decided to look at your profile  What an inspiring story.  I've run 9 marathons including New York 3 times.  Once as a guide for  a Special Olympics athlete.   I also mountain bike and always wanted to do a tri but i can't swim!    I'm presently back to running after over a year off due to surgery and Interferon.  I hope to be able to run another marathon in the spring.  Mel may be trying to kill me but it won't stop me from living  You are in my thoughts.

        frankd brooklyn

        • January 12, 2012 at 1:39 am
        fdess056
        Participant

        Hi, Katy .  I was just responding to David when I decided to look at your profile  What an inspiring story.  I've run 9 marathons including New York 3 times.  Once as a guide for  a Special Olympics athlete.   I also mountain bike and always wanted to do a tri but i can't swim!    I'm presently back to running after over a year off due to surgery and Interferon.  I hope to be able to run another marathon in the spring.  Mel may be trying to kill me but it won't stop me from living  You are in my thoughts.

        frankd brooklyn

        • December 26, 2011 at 4:08 pm
        KatyWI
        Participant

        David, my dx was made based on them being able to see crud growing in the ventricles of my brain on MRI.

        Good luck with Zelboraf; I do believe it crosses the bbb.  There was/is a BRAF brain trial, and I believe NicOz was on it.  BRAF helped her, although it was a fleeting effect as resistance developed. 

        Katy

        • December 25, 2011 at 8:43 am
        davidfromsingapore
        Participant

        Hi KatyWI

         

        Thank you so much for your reply.  I wish you the best and I hope that you have a very happy holiday season.  Please let me know if there is anything I can do to help you.  I am BFAR positive.  My diagnosis of leptomeningeal right now is presumptive – meaning they are not 100% sure as they are basing their conclusion purly on symptoms.  May I ask how your docs know that you have lepomeningeal?  Was there a certain test they did? For me, It will be interesting to know if Zelboraf crosses the brain barrier.  I have heard both sides – but I will be sure to let you know how it works.  The headaches and the confusion and the sensitivity to light and sound are very difficult.  I am a teacher and had hoped to be back in school by now, but I see that this was very over optimistic on my part.  Please let's keep in touch. 

         

        Sincerely, David

        • January 6, 2012 at 7:35 am
        davidfromsingapore
        Participant

        Hi Katy

         

        Just checking on to say hello – and to ask a question.  Forgive me if I asked already.  Besides the crud in your ventricals, how did you know that you have LMD?  Did you do a lumar puncture?  I am told that the risk may not be worth the reward  – because there are many false negatives and a positive would only prove what we believe to be true.  If you do take the temodar, are your docs saying this could be a cure – or is it containment? I don't mean to play down containment, but I am looking someday to be cured – as I hope you are (:  Last – does the WI at the end of your name mean your from Wisconsin?  That's where I am originally from and my family still loves there.  Beautiful place.

        Yours truly, David 

        • January 6, 2012 at 7:35 am
        davidfromsingapore
        Participant

        Hi Katy

         

        Just checking on to say hello – and to ask a question.  Forgive me if I asked already.  Besides the crud in your ventricals, how did you know that you have LMD?  Did you do a lumar puncture?  I am told that the risk may not be worth the reward  – because there are many false negatives and a positive would only prove what we believe to be true.  If you do take the temodar, are your docs saying this could be a cure – or is it containment? I don't mean to play down containment, but I am looking someday to be cured – as I hope you are (:  Last – does the WI at the end of your name mean your from Wisconsin?  That's where I am originally from and my family still loves there.  Beautiful place.

        Yours truly, David 

        • January 6, 2012 at 7:35 am
        davidfromsingapore
        Participant

        Hi Katy

         

        Just checking on to say hello – and to ask a question.  Forgive me if I asked already.  Besides the crud in your ventricals, how did you know that you have LMD?  Did you do a lumar puncture?  I am told that the risk may not be worth the reward  – because there are many false negatives and a positive would only prove what we believe to be true.  If you do take the temodar, are your docs saying this could be a cure – or is it containment? I don't mean to play down containment, but I am looking someday to be cured – as I hope you are (:  Last – does the WI at the end of your name mean your from Wisconsin?  That's where I am originally from and my family still loves there.  Beautiful place.

        Yours truly, David 

      • December 24, 2011 at 4:11 am
      KatyWI
      Participant

      Hi David,

      Lepto warriors are few and far between.  Besides you and me, I only know of Amy, who we lost this year.

      I am asymptomatic but with documented progression and trying to figure out what to do next.  I have an opportunity for a trial, but it will be very delayed, so I am pondering Temodar.  I'm BRAF wild-type.  I hope Zelboraf gives you some symptom relief.

      KatyWI

      • December 24, 2011 at 4:11 am
      KatyWI
      Participant

      Hi David,

      Lepto warriors are few and far between.  Besides you and me, I only know of Amy, who we lost this year.

      I am asymptomatic but with documented progression and trying to figure out what to do next.  I have an opportunity for a trial, but it will be very delayed, so I am pondering Temodar.  I'm BRAF wild-type.  I hope Zelboraf gives you some symptom relief.

      KatyWI

      • December 25, 2011 at 4:04 am
      FormerCaregiver
      Participant

      David, I am sorry to read of your situation. However, some people respond well to Zelboraf and hopefully it will be effective for you.

      Wishing you peace and happiness. You are in my prayers.

      Merry Christmas

      Frank from Australia

      • December 25, 2011 at 4:04 am
      FormerCaregiver
      Participant

      David, I am sorry to read of your situation. However, some people respond well to Zelboraf and hopefully it will be effective for you.

      Wishing you peace and happiness. You are in my prayers.

      Merry Christmas

      Frank from Australia

        • December 25, 2011 at 8:51 am
        davidfromsingapore
        Participant

        Hi Frank

        Thank you for your message and a very merry Chrlistmas and Happy New Year to you too.  If you don't mind me asking – do yo have leptomeningeal disease or are you taking Zelboraf?  If you do ineed have leptomeningeal – how did you know this?  I am interested to know what tests they did to detect it.  My docs are saying that I have it, but they are basing it purley on symptoms – so it could be possible that I don't have it.  Very confusing to me.

        By the way, which part of Austrailia are you from?  Smith's Beach near Margaret River is my favorite place in the world.  I've been there the past 4 years for spring break with my family.  Love it.  I'm ready to pack up and move there.   

         

        All the best, David

        • December 25, 2011 at 8:51 am
        davidfromsingapore
        Participant

        Hi Frank

        Thank you for your message and a very merry Chrlistmas and Happy New Year to you too.  If you don't mind me asking – do yo have leptomeningeal disease or are you taking Zelboraf?  If you do ineed have leptomeningeal – how did you know this?  I am interested to know what tests they did to detect it.  My docs are saying that I have it, but they are basing it purley on symptoms – so it could be possible that I don't have it.  Very confusing to me.

        By the way, which part of Austrailia are you from?  Smith's Beach near Margaret River is my favorite place in the world.  I've been there the past 4 years for spring break with my family.  Love it.  I'm ready to pack up and move there.   

         

        All the best, David

        • December 25, 2011 at 12:40 pm
        FormerCaregiver
        Participant

        David, I don't have leptomeningeal disease (LMD) nor I am I taking the BRAF inhibitor
        Zelboraf. I am here as a consequence of my late wife's battle with melanoma.

        Diagnosis of LMD is made using and a lumbar puncture and MRI (see:
        http://wiki.cns.org/wiki/index.php/Leptomeningeal_disease). I don't know why your docs
        are claiming that you have it based on symptoms alone.

        I am in Melbourne – a very long way from Margaret River.

        Take care

        Frank

        • December 25, 2011 at 12:40 pm
        FormerCaregiver
        Participant

        David, I don't have leptomeningeal disease (LMD) nor I am I taking the BRAF inhibitor
        Zelboraf. I am here as a consequence of my late wife's battle with melanoma.

        Diagnosis of LMD is made using and a lumbar puncture and MRI (see:
        http://wiki.cns.org/wiki/index.php/Leptomeningeal_disease). I don't know why your docs
        are claiming that you have it based on symptoms alone.

        I am in Melbourne – a very long way from Margaret River.

        Take care

        Frank

        • December 25, 2011 at 12:40 pm
        FormerCaregiver
        Participant

        David, I don't have leptomeningeal disease (LMD) nor I am I taking the BRAF inhibitor
        Zelboraf. I am here as a consequence of my late wife's battle with melanoma.

        Diagnosis of LMD is made using and a lumbar puncture and MRI (see:
        http://wiki.cns.org/wiki/index.php/Leptomeningeal_disease). I don't know why your docs
        are claiming that you have it based on symptoms alone.

        I am in Melbourne – a very long way from Margaret River.

        Take care

        Frank

        • December 25, 2011 at 8:51 am
        davidfromsingapore
        Participant

        Hi Frank

        Thank you for your message and a very merry Chrlistmas and Happy New Year to you too.  If you don't mind me asking – do yo have leptomeningeal disease or are you taking Zelboraf?  If you do ineed have leptomeningeal – how did you know this?  I am interested to know what tests they did to detect it.  My docs are saying that I have it, but they are basing it purley on symptoms – so it could be possible that I don't have it.  Very confusing to me.

        By the way, which part of Austrailia are you from?  Smith's Beach near Margaret River is my favorite place in the world.  I've been there the past 4 years for spring break with my family.  Love it.  I'm ready to pack up and move there.   

         

        All the best, David

      • December 25, 2011 at 4:04 am
      FormerCaregiver
      Participant

      David, I am sorry to read of your situation. However, some people respond well to Zelboraf and hopefully it will be effective for you.

      Wishing you peace and happiness. You are in my prayers.

      Merry Christmas

      Frank from Australia

      • January 10, 2012 at 3:17 pm
      fdess056
      Participant

      Hi, David. My most recent brain MRI showed leptomenigeal disease also.  Since i was already scheduled to start IPI for lung and bone mets, I continued to do so.  My 1st IPI dose was on 12/29.  Toady I'm making an appointment for another brain MRI as well as one of the spine.  Then I'll see a neuro-oncologist for further diagnosis and treatment options.  I'm told radiation isn't effective for this type of melanoma but that IPI does break the "brain barrier" and hopefully, will have some effect.  I hope things work out for you.  Please continue to post updates.  I will continue to do so also.

      frankd  Brooklyn, NY

        • January 11, 2012 at 4:41 pm
        davidfromsingapore
        Participant

        Hi Frank

         

        Yes – let's keep in touch.  How was your LMD diagnosed?  For me, they have said the lumbar test is too risky & shows too many false negatives, so they are basing it on symptoms and scans.  But I know that these things are never 100% – so I don't know if I have LMD for sure or not.  Hoping not.  But I am ready for ipi or temodar if Zelboraf doesn't work.  I am just bery scared and confused right now.  3 young children at home.  I need to beat this thing for them.  I truly hope you fight the good fight.  I'll be thinking about you. By the way, I went to University in NJ  – Drew.  Love NYC.  

         

        David

        • January 11, 2012 at 4:41 pm
        davidfromsingapore
        Participant

        Hi Frank

         

        Yes – let's keep in touch.  How was your LMD diagnosed?  For me, they have said the lumbar test is too risky & shows too many false negatives, so they are basing it on symptoms and scans.  But I know that these things are never 100% – so I don't know if I have LMD for sure or not.  Hoping not.  But I am ready for ipi or temodar if Zelboraf doesn't work.  I am just bery scared and confused right now.  3 young children at home.  I need to beat this thing for them.  I truly hope you fight the good fight.  I'll be thinking about you. By the way, I went to University in NJ  – Drew.  Love NYC.  

         

        David

        • January 12, 2012 at 1:25 am
        fdess056
        Participant

        Hang in there, David.  I was scheduled for IPI already for lung & bone mets.  Dr wanted a final brain MRI for new baseline.  It showed a spot on the brain.  Radiation onc, head onc, local neurologist  and doc who wrote report all agreed it looked like leptomeningeal metastasis.  Decided to go ahead with IPI which i started on 12/28…..next dose 1/19.   I have spine and another brain MRI on 2/4 then will see neuro oncologist.  I have no symptoms and had physical from neuro who didn't see even a subtle hint of neuro disease other than spot on scan.  BTW I grew up in New York City, have traveled quite a bit around the US and Europe and nothing can beat this city.  Singapore must be a little different,   I'll  definitely keep in touch.  Until then, keep your spirits up!  ( It would be helpful to add your profile).

        KatyWI, would you mind sharing your experience with leptomingeal disease??  Please feel free to contact me via personal email if you'd like (both of you)     fdessereau@aol.com

        Anyone else out there with this situation?

        frankd  brooklyn NY

        • January 12, 2012 at 1:25 am
        fdess056
        Participant

        Hang in there, David.  I was scheduled for IPI already for lung & bone mets.  Dr wanted a final brain MRI for new baseline.  It showed a spot on the brain.  Radiation onc, head onc, local neurologist  and doc who wrote report all agreed it looked like leptomeningeal metastasis.  Decided to go ahead with IPI which i started on 12/28…..next dose 1/19.   I have spine and another brain MRI on 2/4 then will see neuro oncologist.  I have no symptoms and had physical from neuro who didn't see even a subtle hint of neuro disease other than spot on scan.  BTW I grew up in New York City, have traveled quite a bit around the US and Europe and nothing can beat this city.  Singapore must be a little different,   I'll  definitely keep in touch.  Until then, keep your spirits up!  ( It would be helpful to add your profile).

        KatyWI, would you mind sharing your experience with leptomingeal disease??  Please feel free to contact me via personal email if you'd like (both of you)     fdessereau@aol.com

        Anyone else out there with this situation?

        frankd  brooklyn NY

        • January 12, 2012 at 1:25 am
        fdess056
        Participant

        Hang in there, David.  I was scheduled for IPI already for lung & bone mets.  Dr wanted a final brain MRI for new baseline.  It showed a spot on the brain.  Radiation onc, head onc, local neurologist  and doc who wrote report all agreed it looked like leptomeningeal metastasis.  Decided to go ahead with IPI which i started on 12/28…..next dose 1/19.   I have spine and another brain MRI on 2/4 then will see neuro oncologist.  I have no symptoms and had physical from neuro who didn't see even a subtle hint of neuro disease other than spot on scan.  BTW I grew up in New York City, have traveled quite a bit around the US and Europe and nothing can beat this city.  Singapore must be a little different,   I'll  definitely keep in touch.  Until then, keep your spirits up!  ( It would be helpful to add your profile).

        KatyWI, would you mind sharing your experience with leptomingeal disease??  Please feel free to contact me via personal email if you'd like (both of you)     fdessereau@aol.com

        Anyone else out there with this situation?

        frankd  brooklyn NY

        • January 11, 2012 at 4:41 pm
        davidfromsingapore
        Participant

        Hi Frank

         

        Yes – let's keep in touch.  How was your LMD diagnosed?  For me, they have said the lumbar test is too risky & shows too many false negatives, so they are basing it on symptoms and scans.  But I know that these things are never 100% – so I don't know if I have LMD for sure or not.  Hoping not.  But I am ready for ipi or temodar if Zelboraf doesn't work.  I am just bery scared and confused right now.  3 young children at home.  I need to beat this thing for them.  I truly hope you fight the good fight.  I'll be thinking about you. By the way, I went to University in NJ  – Drew.  Love NYC.  

         

        David

      • January 10, 2012 at 3:17 pm
      fdess056
      Participant

      Hi, David. My most recent brain MRI showed leptomenigeal disease also.  Since i was already scheduled to start IPI for lung and bone mets, I continued to do so.  My 1st IPI dose was on 12/29.  Toady I'm making an appointment for another brain MRI as well as one of the spine.  Then I'll see a neuro-oncologist for further diagnosis and treatment options.  I'm told radiation isn't effective for this type of melanoma but that IPI does break the "brain barrier" and hopefully, will have some effect.  I hope things work out for you.  Please continue to post updates.  I will continue to do so also.

      frankd  Brooklyn, NY

      • January 10, 2012 at 3:17 pm
      fdess056
      Participant

      Hi, David. My most recent brain MRI showed leptomenigeal disease also.  Since i was already scheduled to start IPI for lung and bone mets, I continued to do so.  My 1st IPI dose was on 12/29.  Toady I'm making an appointment for another brain MRI as well as one of the spine.  Then I'll see a neuro-oncologist for further diagnosis and treatment options.  I'm told radiation isn't effective for this type of melanoma but that IPI does break the "brain barrier" and hopefully, will have some effect.  I hope things work out for you.  Please continue to post updates.  I will continue to do so also.

      frankd  Brooklyn, NY

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