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joy_

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      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!

          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

              This is a really weird story.  I hate meat as much as the next vegan and pretty sure my melanoma was a result of chronic UV exposure.  I would be interested in a story about it being spread through mosquitos though.  Know someone who has as a result of blood transfusion. 

              joy_
              Participant

                This is a really weird story.  I hate meat as much as the next vegan and pretty sure my melanoma was a result of chronic UV exposure.  I would be interested in a story about it being spread through mosquitos though.  Know someone who has as a result of blood transfusion. 

                joy_
                Participant

                  This is a really weird story.  I hate meat as much as the next vegan and pretty sure my melanoma was a result of chronic UV exposure.  I would be interested in a story about it being spread through mosquitos though.  Know someone who has as a result of blood transfusion. 

                  joy_
                  Participant

                    Thank you for this post, Brian.  I could not agree with you more.

                    My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  😉

                    I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

                    And Hannah, I sincerely wish you the very best in your journey.  God bless you.

                    joy

                    joy_
                    Participant

                      Thank you for this post, Brian.  I could not agree with you more.

                      My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  😉

                      I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

                      And Hannah, I sincerely wish you the very best in your journey.  God bless you.

                      joy

                      joy_
                      Participant

                        Thank you for this post, Brian.  I could not agree with you more.

                        My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  😉

                        I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

                        And Hannah, I sincerely wish you the very best in your journey.  God bless you.

                        joy

                        joy_
                        Participant

                          Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

                          joy_
                          Participant

                            Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

                            joy_
                            Participant

                              Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

                              joy_
                              Participant

                                Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

                                Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

                                joy_
                                Participant

                                  Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

                                  Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

                                  joy_
                                  Participant

                                    Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

                                    Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

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