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Leptomeningeal Disease?

Forums General Melanoma Community Leptomeningeal Disease?

  • Post
    kalisama
    Participant

      I;ve been going through so much lately that i haven't had time to check in to the forums, but hope to be back around more as i contiue this journey with y'all.

      I'm wondering if others with aggressive brain mets have also been diagnosed with Leptomentingeal disease? While I understand it to be somewhat rare, it now has me more concerned than the melanoma itself. I have been having increased CNS symptoms from numbness to urinary incontenance, as well as some cognitive breakdown. I'm not even sure what to ask my oncs about this new progression which is evidently very full on for me.

      Last brain radiation failed, and the 2 largest tumors we are after have tripled in size in 3 weeks after cyberknife. we're going to try to go after them again this week. with the hope that the first Yurvoy infusion of 2 weeks ago may help the radiation work better this time. Starting to run out of options short of WBR, a whole other thread that I'm hoping to not have to go down here or in life.

      Anyway, as always, I'm interested in your experiences and wishing you the best of health always.

      Blessings and gratitude to all,
      kali

    Viewing 14 reply threads
    • Replies
        RJoeyB
        Participant

          Kali, I don't know much about leptomeningeal disease other than what I've read online.  You can search this forum for a few others' experiences with it here, too.  However, I have had a brain metastasis (about 18 months ago), craniotomy, CyberKnife, and am possibly dealing with late onset radiation necrosis right now, and the symptoms you describe are all possibilities with brain tumors and treatment, depending on where in the brain things are happening.  There can be motor control, sensory, cognitive, or any number of symptoms. I'm not saying that LMD isn't a possibility, but given that you have known brain tumors, i wouldn't leap to the conclusion that it's LMD.  When are your next scans and have you discussed with your doctor?

          Joe

           

            kalisama
            Participant

              Thank you Joe. Last scans have conclusively diagnosed aggressive and progressive LMD. I do remember seeing threads here in the past , but cannot find them. Next scans will be at least 4 weeks out. Naturally there is a lot of concern that the tumors are growing, not shrinking after cyberknife treatment 3 weeks ago. Heading back in for more cyberknife beginning tomorrow through friday. In addition to the symptoms you have listed, I am dealing with CNS issues from numbness, headaches, to urinary incontinance.

              I am consulting with my radiology onc and my primary onc tomorrow. lots of questions naturally. i do not feel that the one yervoy treatment has had time to do a single thing to enhance the efficacy of this week's radiation. will keep posting as i can.

              thank you again for taking the time to respond. 

              best of health to you always,
              la;o

              RJoeyB
              Participant

                Kali, my apologies…  from your post, I didn't realize that LMD had been diagnosed and thought you were wondering if your symptoms might be indicative of LMD.  So I'm not making an assumption, are the CyberKnife sessions targeting the tumors or LMD?  Have your doctors suggested a course of action to treat the LMD?

                Best, Joe

                RJoeyB
                Participant

                  Kali, my apologies…  from your post, I didn't realize that LMD had been diagnosed and thought you were wondering if your symptoms might be indicative of LMD.  So I'm not making an assumption, are the CyberKnife sessions targeting the tumors or LMD?  Have your doctors suggested a course of action to treat the LMD?

                  Best, Joe

                  RJoeyB
                  Participant

                    Kali, my apologies…  from your post, I didn't realize that LMD had been diagnosed and thought you were wondering if your symptoms might be indicative of LMD.  So I'm not making an assumption, are the CyberKnife sessions targeting the tumors or LMD?  Have your doctors suggested a course of action to treat the LMD?

                    Best, Joe

                    kalisama
                    Participant

                      Thank you Joe. Last scans have conclusively diagnosed aggressive and progressive LMD. I do remember seeing threads here in the past , but cannot find them. Next scans will be at least 4 weeks out. Naturally there is a lot of concern that the tumors are growing, not shrinking after cyberknife treatment 3 weeks ago. Heading back in for more cyberknife beginning tomorrow through friday. In addition to the symptoms you have listed, I am dealing with CNS issues from numbness, headaches, to urinary incontinance.

                      I am consulting with my radiology onc and my primary onc tomorrow. lots of questions naturally. i do not feel that the one yervoy treatment has had time to do a single thing to enhance the efficacy of this week's radiation. will keep posting as i can.

                      thank you again for taking the time to respond. 

                      best of health to you always,
                      la;o

                      kalisama
                      Participant

                        Thank you Joe. Last scans have conclusively diagnosed aggressive and progressive LMD. I do remember seeing threads here in the past , but cannot find them. Next scans will be at least 4 weeks out. Naturally there is a lot of concern that the tumors are growing, not shrinking after cyberknife treatment 3 weeks ago. Heading back in for more cyberknife beginning tomorrow through friday. In addition to the symptoms you have listed, I am dealing with CNS issues from numbness, headaches, to urinary incontinance.

                        I am consulting with my radiology onc and my primary onc tomorrow. lots of questions naturally. i do not feel that the one yervoy treatment has had time to do a single thing to enhance the efficacy of this week's radiation. will keep posting as i can.

                        thank you again for taking the time to respond. 

                        best of health to you always,
                        la;o

                        ecc26
                        Participant

                          I had "suspected" leptomeningeal disease with the first round of brain mets in June 2013 (I've had 2 other rounds since then. Due to the suspicion, I began with WBR (something I never wanted to have to do). The mets all seemed to respond well and the next 2 rounds that popped up were treated with gamma knife (January and May of this year).

                          More recently I began the Merk PD-1 EAP in June just 3 weeks after my last gamma knife treatment and they made me repeat the MRI before leting me onto the EAP. The radiologist completely freaked out because of the mets he saw (even though they had just been treated). None of the rest of us were surprised by them and I got 4 doses of PD-1 three weeks apart before they repeated a set of scans at the beginning of September. It was the reults from that scan that sent things into a tailspin for me and less than 2 weeks later I was admitted for a craniotomy for a 3.5cm "new" tumor in my right frontal lobe. The plan at the time was to remove that, take 3 weeks or so to heal then come back for radiation to the surgical site as well as to a few other "new" spots they had seen. I have never had any symptoms from any of my mets and this round has been no different.

                          The craniotomy proceeded as planned and went (at least from my, and it appeared my surgeon's prospective) remarkably well. I was discharged only 2 days later- still with the plan to return in 3 weeks for gamma knife. When the path results came in though it was determined that the entirety of the 3.5cm mass that was removed was radiaion necrosis- not a single live cell was found. Given that information the plan was changed from gamma knife to recheck MRI to look at the other spots and see if they were growing. That recheck was just this past Monday and the decision was to recheck again in 6 weeks. 

                          What's making them nervous is that both the area that was removed and the other areas they had planned on treating appeared "new", so they want to keep track of things. However, all of these "new" areas are near other areas where I had had at least 1 (in the case of the removed mass of necrosis there had been 2) tumor(s) previously treated with gamma knife. The new working theory is that either the necrosis resulted from proximity to previously treated tumors or that the PD-1 is actually getting things done in the brain as well as my body. Either way the decision was to hold off on more radiation for a few more weeks.

                          Long post, but the point is that radiation necrosis does happen. I was lucky in that I didn't have any side effects (except for a craniotomy) from mine, but there are plenty who do get symptoms from necrosis. I very much agree with Joe that you should perhaps get a scan and speak with a doctor before jumping to conclusions that it's leptomeningeal disease. . Yes LMD is frightening, but there are other explanations. Try not to get too upset thinking about the "what if's"until you at least have some more information (it's hard, I know)

                          Good luck

                          ecc26
                          Participant

                            Oops… should have read through all of the posts. I am sorry to hear that they have conclusively diagnosed LMD. I wish I had any helpful advice or something inspiring to say, but I really don't as my LMD was presumptive and not conclusive and i had no symptoms associated. 

                            For now I will just have to stick with good luck, I'll be thinking of you, and perhaps add I (and I'm sure everyone else on this forum) will be rooting for you! Fight this with everything you've got and come back and let us know how everything is going for you. You do matter.

                            -Eva

                            ecc26
                            Participant

                              Oops… should have read through all of the posts. I am sorry to hear that they have conclusively diagnosed LMD. I wish I had any helpful advice or something inspiring to say, but I really don't as my LMD was presumptive and not conclusive and i had no symptoms associated. 

                              For now I will just have to stick with good luck, I'll be thinking of you, and perhaps add I (and I'm sure everyone else on this forum) will be rooting for you! Fight this with everything you've got and come back and let us know how everything is going for you. You do matter.

                              -Eva

                              ecc26
                              Participant

                                Oops… should have read through all of the posts. I am sorry to hear that they have conclusively diagnosed LMD. I wish I had any helpful advice or something inspiring to say, but I really don't as my LMD was presumptive and not conclusive and i had no symptoms associated. 

                                For now I will just have to stick with good luck, I'll be thinking of you, and perhaps add I (and I'm sure everyone else on this forum) will be rooting for you! Fight this with everything you've got and come back and let us know how everything is going for you. You do matter.

                                -Eva

                                ecc26
                                Participant

                                  I had "suspected" leptomeningeal disease with the first round of brain mets in June 2013 (I've had 2 other rounds since then. Due to the suspicion, I began with WBR (something I never wanted to have to do). The mets all seemed to respond well and the next 2 rounds that popped up were treated with gamma knife (January and May of this year).

                                  More recently I began the Merk PD-1 EAP in June just 3 weeks after my last gamma knife treatment and they made me repeat the MRI before leting me onto the EAP. The radiologist completely freaked out because of the mets he saw (even though they had just been treated). None of the rest of us were surprised by them and I got 4 doses of PD-1 three weeks apart before they repeated a set of scans at the beginning of September. It was the reults from that scan that sent things into a tailspin for me and less than 2 weeks later I was admitted for a craniotomy for a 3.5cm "new" tumor in my right frontal lobe. The plan at the time was to remove that, take 3 weeks or so to heal then come back for radiation to the surgical site as well as to a few other "new" spots they had seen. I have never had any symptoms from any of my mets and this round has been no different.

                                  The craniotomy proceeded as planned and went (at least from my, and it appeared my surgeon's prospective) remarkably well. I was discharged only 2 days later- still with the plan to return in 3 weeks for gamma knife. When the path results came in though it was determined that the entirety of the 3.5cm mass that was removed was radiaion necrosis- not a single live cell was found. Given that information the plan was changed from gamma knife to recheck MRI to look at the other spots and see if they were growing. That recheck was just this past Monday and the decision was to recheck again in 6 weeks. 

                                  What's making them nervous is that both the area that was removed and the other areas they had planned on treating appeared "new", so they want to keep track of things. However, all of these "new" areas are near other areas where I had had at least 1 (in the case of the removed mass of necrosis there had been 2) tumor(s) previously treated with gamma knife. The new working theory is that either the necrosis resulted from proximity to previously treated tumors or that the PD-1 is actually getting things done in the brain as well as my body. Either way the decision was to hold off on more radiation for a few more weeks.

                                  Long post, but the point is that radiation necrosis does happen. I was lucky in that I didn't have any side effects (except for a craniotomy) from mine, but there are plenty who do get symptoms from necrosis. I very much agree with Joe that you should perhaps get a scan and speak with a doctor before jumping to conclusions that it's leptomeningeal disease. . Yes LMD is frightening, but there are other explanations. Try not to get too upset thinking about the "what if's"until you at least have some more information (it's hard, I know)

                                  Good luck

                                  ecc26
                                  Participant

                                    I had "suspected" leptomeningeal disease with the first round of brain mets in June 2013 (I've had 2 other rounds since then. Due to the suspicion, I began with WBR (something I never wanted to have to do). The mets all seemed to respond well and the next 2 rounds that popped up were treated with gamma knife (January and May of this year).

                                    More recently I began the Merk PD-1 EAP in June just 3 weeks after my last gamma knife treatment and they made me repeat the MRI before leting me onto the EAP. The radiologist completely freaked out because of the mets he saw (even though they had just been treated). None of the rest of us were surprised by them and I got 4 doses of PD-1 three weeks apart before they repeated a set of scans at the beginning of September. It was the reults from that scan that sent things into a tailspin for me and less than 2 weeks later I was admitted for a craniotomy for a 3.5cm "new" tumor in my right frontal lobe. The plan at the time was to remove that, take 3 weeks or so to heal then come back for radiation to the surgical site as well as to a few other "new" spots they had seen. I have never had any symptoms from any of my mets and this round has been no different.

                                    The craniotomy proceeded as planned and went (at least from my, and it appeared my surgeon's prospective) remarkably well. I was discharged only 2 days later- still with the plan to return in 3 weeks for gamma knife. When the path results came in though it was determined that the entirety of the 3.5cm mass that was removed was radiaion necrosis- not a single live cell was found. Given that information the plan was changed from gamma knife to recheck MRI to look at the other spots and see if they were growing. That recheck was just this past Monday and the decision was to recheck again in 6 weeks. 

                                    What's making them nervous is that both the area that was removed and the other areas they had planned on treating appeared "new", so they want to keep track of things. However, all of these "new" areas are near other areas where I had had at least 1 (in the case of the removed mass of necrosis there had been 2) tumor(s) previously treated with gamma knife. The new working theory is that either the necrosis resulted from proximity to previously treated tumors or that the PD-1 is actually getting things done in the brain as well as my body. Either way the decision was to hold off on more radiation for a few more weeks.

                                    Long post, but the point is that radiation necrosis does happen. I was lucky in that I didn't have any side effects (except for a craniotomy) from mine, but there are plenty who do get symptoms from necrosis. I very much agree with Joe that you should perhaps get a scan and speak with a doctor before jumping to conclusions that it's leptomeningeal disease. . Yes LMD is frightening, but there are other explanations. Try not to get too upset thinking about the "what if's"until you at least have some more information (it's hard, I know)

                                    Good luck

                                  RJoeyB
                                  Participant

                                    Kali, I don't know much about leptomeningeal disease other than what I've read online.  You can search this forum for a few others' experiences with it here, too.  However, I have had a brain metastasis (about 18 months ago), craniotomy, CyberKnife, and am possibly dealing with late onset radiation necrosis right now, and the symptoms you describe are all possibilities with brain tumors and treatment, depending on where in the brain things are happening.  There can be motor control, sensory, cognitive, or any number of symptoms. I'm not saying that LMD isn't a possibility, but given that you have known brain tumors, i wouldn't leap to the conclusion that it's LMD.  When are your next scans and have you discussed with your doctor?

                                    Joe

                                     

                                    RJoeyB
                                    Participant

                                      Kali, I don't know much about leptomeningeal disease other than what I've read online.  You can search this forum for a few others' experiences with it here, too.  However, I have had a brain metastasis (about 18 months ago), craniotomy, CyberKnife, and am possibly dealing with late onset radiation necrosis right now, and the symptoms you describe are all possibilities with brain tumors and treatment, depending on where in the brain things are happening.  There can be motor control, sensory, cognitive, or any number of symptoms. I'm not saying that LMD isn't a possibility, but given that you have known brain tumors, i wouldn't leap to the conclusion that it's LMD.  When are your next scans and have you discussed with your doctor?

                                      Joe

                                       

                                      casagrayson
                                      Participant
                                        casagrayson
                                        Participant
                                          casagrayson
                                          Participant
                                            ed williams
                                            Participant

                                              Hi Kali, I just wanted to send you a cyber hug from Canada. I am one year almost to the day from cyber knife treatment for 3 brain mets.  Ed

                                              ed williams
                                              Participant

                                                Hi Kali, I just wanted to send you a cyber hug from Canada. I am one year almost to the day from cyber knife treatment for 3 brain mets.  Ed

                                                ed williams
                                                Participant

                                                  Hi Kali, I just wanted to send you a cyber hug from Canada. I am one year almost to the day from cyber knife treatment for 3 brain mets.  Ed

                                                  joy_
                                                  Participant

                                                    Kali,

                                                    I am sorry to hear about your diagnosis.  I just wanted to reach out to you to share my husband's story.  He was diagnosed stage II melanoma in 2008.  July 2013 he was found to have LMD (showing around his cauda equina – lower back) causing paralysis.  After radiation treatment and resuming Zelboraf, he regained use of his legs and by December 2013 was NED.  Unfortunately that didn't last long and February of this year LMD appeared again on brain scan.  He was presented with the option of WBR at Emory in Atlanta.  He chose to travel to MD Anderson where we lived for 4 months while he was treated with intrathecal IL-2.  The intrathecal IL2 was successful in controlling his LMD but it was a very ROUGH treatment to say the least.  He passed away (July this year) from the disease in his lungs and around his heart.

                                                    Anyway, I hope my story isn't a downer.  I have a friend who has been living with LMD for well over a year.  I actually think my husband and I got a LOT of bonus time together and am grateful.  If you have any questions, feel free to send me an email.  I am happy to help you however I can.  Just feel like I should offer up my experience since not many people dealing with LMD frequent this board. (I rarely come here anymore but just happened to today and saw your post).  LMD is becoming much more common because the new treatments are helping mel patients live so much longer.

                                                    Wishing you the best and praying for a cure!

                                                      PoppaDave1961
                                                      Participant
                                                        Kali, would you be willing to connect with me on the LMD? My father is currently battling it and I am in search of treatments options.
                                                        PoppaDave1961
                                                        Participant
                                                          Kali, would you be willing to connect with me on the LMD? My father is currently battling it and I am in search of treatments options.
                                                          PoppaDave1961
                                                          Participant
                                                            Kali, would you be willing to connect with me on the LMD? My father is currently battling it and I am in search of treatments options.
                                                          joy_
                                                          Participant

                                                            Kali,

                                                            I am sorry to hear about your diagnosis.  I just wanted to reach out to you to share my husband's story.  He was diagnosed stage II melanoma in 2008.  July 2013 he was found to have LMD (showing around his cauda equina – lower back) causing paralysis.  After radiation treatment and resuming Zelboraf, he regained use of his legs and by December 2013 was NED.  Unfortunately that didn't last long and February of this year LMD appeared again on brain scan.  He was presented with the option of WBR at Emory in Atlanta.  He chose to travel to MD Anderson where we lived for 4 months while he was treated with intrathecal IL-2.  The intrathecal IL2 was successful in controlling his LMD but it was a very ROUGH treatment to say the least.  He passed away (July this year) from the disease in his lungs and around his heart.

                                                            Anyway, I hope my story isn't a downer.  I have a friend who has been living with LMD for well over a year.  I actually think my husband and I got a LOT of bonus time together and am grateful.  If you have any questions, feel free to send me an email.  I am happy to help you however I can.  Just feel like I should offer up my experience since not many people dealing with LMD frequent this board. (I rarely come here anymore but just happened to today and saw your post).  LMD is becoming much more common because the new treatments are helping mel patients live so much longer.

                                                            Wishing you the best and praying for a cure!

                                                            joy_
                                                            Participant

                                                              Kali,

                                                              I am sorry to hear about your diagnosis.  I just wanted to reach out to you to share my husband's story.  He was diagnosed stage II melanoma in 2008.  July 2013 he was found to have LMD (showing around his cauda equina – lower back) causing paralysis.  After radiation treatment and resuming Zelboraf, he regained use of his legs and by December 2013 was NED.  Unfortunately that didn't last long and February of this year LMD appeared again on brain scan.  He was presented with the option of WBR at Emory in Atlanta.  He chose to travel to MD Anderson where we lived for 4 months while he was treated with intrathecal IL-2.  The intrathecal IL2 was successful in controlling his LMD but it was a very ROUGH treatment to say the least.  He passed away (July this year) from the disease in his lungs and around his heart.

                                                              Anyway, I hope my story isn't a downer.  I have a friend who has been living with LMD for well over a year.  I actually think my husband and I got a LOT of bonus time together and am grateful.  If you have any questions, feel free to send me an email.  I am happy to help you however I can.  Just feel like I should offer up my experience since not many people dealing with LMD frequent this board. (I rarely come here anymore but just happened to today and saw your post).  LMD is becoming much more common because the new treatments are helping mel patients live so much longer.

                                                              Wishing you the best and praying for a cure!

                                                              kalisama
                                                              Participant

                                                                Thank you everyone for sharing your stories and wisdom. I live rural so when I travel for treatments, etc, I am usually gone for at least a week and have just returned home.

                                                                This last week I underwent 5 more cyberknife treatments to the largest brain met. The last 5 treatments 6 weeks ago indicated rapid tumor growth, not shrinkage, but my radiology onc thought it worth another go round before moving to WBR. Naturally now we wait. Again. I appriciate the comments about Necrosis, especially since complete spinal MRIs revealed anomalies only at my thorasic spine which are inconclusive. I will certainly explore this further, however LMD is still the secondary diagnosis to the melanoma.

                                                                As I've been suffering from focus seizures, nice to finally know what these episodes are, my anti-seizure meds have been increased. I am also continuing on high doses of dexamethasone.

                                                                I have my 2nd Yervoy infusion in a few weeks. I am hoping that will be sufficient to consider me a fail and get me to Keytruda pronto! My gut just tells me this is the right med for me and I am so frustrated having to jump through these hoops to get to this treatment. I'm certain that I'm not the only one in this boat right now, adrift.

                                                                So for me, this is the waiting period. It will likely be at least 6 weeks before next scans or any change in treatment. As someone else mentioned in this thread, I was told to take this time to get my affairs in order, while things are 'smooth'. Never the words we want to hear.

                                                                I will continue to share here as appropriate. And again, from the bottom of my heart, I wish us all a journey of grace and peace.

                                                                Bless,
                                                                kali

                                                                kalisama
                                                                Participant

                                                                  Thank you everyone for sharing your stories and wisdom. I live rural so when I travel for treatments, etc, I am usually gone for at least a week and have just returned home.

                                                                  This last week I underwent 5 more cyberknife treatments to the largest brain met. The last 5 treatments 6 weeks ago indicated rapid tumor growth, not shrinkage, but my radiology onc thought it worth another go round before moving to WBR. Naturally now we wait. Again. I appriciate the comments about Necrosis, especially since complete spinal MRIs revealed anomalies only at my thorasic spine which are inconclusive. I will certainly explore this further, however LMD is still the secondary diagnosis to the melanoma.

                                                                  As I've been suffering from focus seizures, nice to finally know what these episodes are, my anti-seizure meds have been increased. I am also continuing on high doses of dexamethasone.

                                                                  I have my 2nd Yervoy infusion in a few weeks. I am hoping that will be sufficient to consider me a fail and get me to Keytruda pronto! My gut just tells me this is the right med for me and I am so frustrated having to jump through these hoops to get to this treatment. I'm certain that I'm not the only one in this boat right now, adrift.

                                                                  So for me, this is the waiting period. It will likely be at least 6 weeks before next scans or any change in treatment. As someone else mentioned in this thread, I was told to take this time to get my affairs in order, while things are 'smooth'. Never the words we want to hear.

                                                                  I will continue to share here as appropriate. And again, from the bottom of my heart, I wish us all a journey of grace and peace.

                                                                  Bless,
                                                                  kali

                                                                  kalisama
                                                                  Participant

                                                                    Thank you everyone for sharing your stories and wisdom. I live rural so when I travel for treatments, etc, I am usually gone for at least a week and have just returned home.

                                                                    This last week I underwent 5 more cyberknife treatments to the largest brain met. The last 5 treatments 6 weeks ago indicated rapid tumor growth, not shrinkage, but my radiology onc thought it worth another go round before moving to WBR. Naturally now we wait. Again. I appriciate the comments about Necrosis, especially since complete spinal MRIs revealed anomalies only at my thorasic spine which are inconclusive. I will certainly explore this further, however LMD is still the secondary diagnosis to the melanoma.

                                                                    As I've been suffering from focus seizures, nice to finally know what these episodes are, my anti-seizure meds have been increased. I am also continuing on high doses of dexamethasone.

                                                                    I have my 2nd Yervoy infusion in a few weeks. I am hoping that will be sufficient to consider me a fail and get me to Keytruda pronto! My gut just tells me this is the right med for me and I am so frustrated having to jump through these hoops to get to this treatment. I'm certain that I'm not the only one in this boat right now, adrift.

                                                                    So for me, this is the waiting period. It will likely be at least 6 weeks before next scans or any change in treatment. As someone else mentioned in this thread, I was told to take this time to get my affairs in order, while things are 'smooth'. Never the words we want to hear.

                                                                    I will continue to share here as appropriate. And again, from the bottom of my heart, I wish us all a journey of grace and peace.

                                                                    Bless,
                                                                    kali

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