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ISOLATED HOT LIMB PERFUSION W/ MELPHALAN
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ISOLATED HOT LIMB PERFUSION W/ MELPHALAN

› Forums › General Melanoma Community › ISOLATED HOT LIMB PERFUSION W/ MELPHALAN

  • Post
    • December 16, 2011 at 10:46 pm
    Camp Host
    Participant

       Would sure love to chat with others with like issues …..8 months post Isolated Hot Limb Perfusion for a melanoma on foot with a metastatic melanoma on shin…. now experiencing frozen knee joint Doc's are saying the Melphalan has dried up the cartilege …. total knee replacement  next… Wondering what others have experienced … CAMP HOST Janet 

       Would sure love to chat with others with like issues …..8 months post Isolated Hot Limb Perfusion for a melanoma on foot with a metastatic melanoma on shin…. now experiencing frozen knee joint Doc's are saying the Melphalan has dried up the cartilege …. total knee replacement  next… Wondering what others have experienced … CAMP HOST Janet 

    Viewing 2 reply threads
    • Replies
        • December 17, 2011 at 2:13 am
        Vermont_Donna
        Participant

          Hi,

            I had an isolated limb perfusion in 2009. Did not have a knee problem like yours. You can review my profile for more information. Are you being followed by a melanoma oncologist? I reviewed your profile, and saw that you wrote the doctors told you they "got all the cancer" after your ILP. What was their determination of success? ILP's are tough treatments. I have significant neuropathy in my leg from my knee down. There is an 85% success rate. I unfortunately had melanoma return within the year of doing the ILP.

          I hope your knee gets better without having to have a knee replacement.

          Vermont_Donna,stage 3a, NED

            • December 17, 2011 at 9:28 pm
            Camp Host
            Participant

              Donna, 

              You mentioned you too have had and ILP did they also cook your leg?? 

              Is there a difference in an ILP and an IHLP ? 

              What drug did they use? 

               

               

              Are you being followed by a melanoma oncologist?  YES  At first every month  for 3 months then 3 months all with scans and blood work … My MEL bascially was never systemic just in transist , 

               What was their determination of success?  Clean scans and blood work… 

              I think it was over kill and now  this heavy leg that does not bend and lymphedema (4 nodes removed )

               

              Do you have any feeling in your leg? I do not yet ….. and none at all in foot  well maybe some in toes however very delayed feeling … 

              • December 17, 2011 at 10:48 pm
              Vermont_Donna
              Participant

                Hi,

                I had an isolated limb perfusion in 2009 at Mass General and yes they did heat my leg up to 105 degrees while administering the drug melphalen over 5 hours. I have never heard it called an IHLP. Think heating the leg is pretty standard.

                Having intranist mets means the melanoma is traveling via your lymph system, which is considered systemic melanoma (Janner, or somebody else, correct me if I am wrong). Intransit mets are often too small to show up on scans, mine have been anyways, and I have found each of my new intransits by careful looking and feeling my leg daily. I do have leg lymphadema (10 nodes remeoved) and wear a compression stocking daily and a nighttime compression garment. Plus I do self lymph massage of the leg every day in the shower. I have had extensive lymphadema therapy by a lymphadema specialist when I have needed it.

                I do have neuropathy from my knee down. I do have feeling still, but have pins and needles sensations, sometimes shooting pains, aching etc, a variety of neuropathic symptoms. I have just learned to live with it. I have seen a neurologist who did nerve conduction studies and my neuropathy is exacerbated by my type 2 diabetes. He had me do Vitamin B studies and I am wating for the results.

                I dont mean to be negative about your statements about your melanoma, I just feel that I need to let you know to be vigilant and dont be thinking that this treatment means you dont have to be concerned anymore. You do always need to be on guard for melanoma and perhaps it would be good to learn more about in transit melanoma and the mechanism of how it can spread.

                Best of luck,

                Vermont_Donna, stage 3a, NED

                • December 17, 2011 at 11:37 pm
                Camp Host
                Participant

                  Donna, 

                  Thank you so very much for sharing your information and thoughts… I did not think you were being negative at all.

                  I'm open to any and all information… I do feel I'm very vigilant with my thinking.. I do know they can come back anytime.

                  I have also had extensive lymphadema therapy by a lymphadema specialist who also taught my husband how to wrap me time to time .. for added compression (self massage too) 

                  I do also wear a compression garment during the day . Juzo garment for nighttime.

                  Did you ever have trouble bending your knee ? 

                  Sure wish I could talk to more ILP patients… 

                  Thank you again Donna smiley

                  • December 18, 2011 at 1:34 pm
                  Vermont_Donna
                  Participant

                    HI,

                    Yes bending my right knee IS different than bending my left knee. Part of it comes from extensive scar tissues in the area where I had a previous serious leg injury a few years prior to developing melanoma in the same area and then from having a few intransit mets removed and wider excisions done. I was hospitalized for pain control (severe neuropathy and cellulitis of my right leg) a month after the ILP. They did find fluid in my knee area but NOT in the knee joint itself. I think they figured the extra fluid was inflammation after the ILP procedure. Pretty much the ILP blows out all your small veins, capillaries and nerves, but your body re-routes blood and nerves can regenerate. Maybe not to a previous level of functioning.

                    I do have side effects from the ILP, and other melanoma treatments. But I have NO regrets about treatments I have done and will do anything to battle to beast! I feel that the ILP, like the year of interferon, bought me TIME til the next treatment. I was able to do Yervoy 12/10 to 2/11, and I am NED once again!

                    Vermont_Donna, stage 3a, NED

                    • December 18, 2011 at 1:34 pm
                    Vermont_Donna
                    Participant

                      HI,

                      Yes bending my right knee IS different than bending my left knee. Part of it comes from extensive scar tissues in the area where I had a previous serious leg injury a few years prior to developing melanoma in the same area and then from having a few intransit mets removed and wider excisions done. I was hospitalized for pain control (severe neuropathy and cellulitis of my right leg) a month after the ILP. They did find fluid in my knee area but NOT in the knee joint itself. I think they figured the extra fluid was inflammation after the ILP procedure. Pretty much the ILP blows out all your small veins, capillaries and nerves, but your body re-routes blood and nerves can regenerate. Maybe not to a previous level of functioning.

                      I do have side effects from the ILP, and other melanoma treatments. But I have NO regrets about treatments I have done and will do anything to battle to beast! I feel that the ILP, like the year of interferon, bought me TIME til the next treatment. I was able to do Yervoy 12/10 to 2/11, and I am NED once again!

                      Vermont_Donna, stage 3a, NED

                      • December 18, 2011 at 1:34 pm
                      Vermont_Donna
                      Participant

                        HI,

                        Yes bending my right knee IS different than bending my left knee. Part of it comes from extensive scar tissues in the area where I had a previous serious leg injury a few years prior to developing melanoma in the same area and then from having a few intransit mets removed and wider excisions done. I was hospitalized for pain control (severe neuropathy and cellulitis of my right leg) a month after the ILP. They did find fluid in my knee area but NOT in the knee joint itself. I think they figured the extra fluid was inflammation after the ILP procedure. Pretty much the ILP blows out all your small veins, capillaries and nerves, but your body re-routes blood and nerves can regenerate. Maybe not to a previous level of functioning.

                        I do have side effects from the ILP, and other melanoma treatments. But I have NO regrets about treatments I have done and will do anything to battle to beast! I feel that the ILP, like the year of interferon, bought me TIME til the next treatment. I was able to do Yervoy 12/10 to 2/11, and I am NED once again!

                        Vermont_Donna, stage 3a, NED

                        • December 17, 2011 at 11:37 pm
                        Camp Host
                        Participant

                          Donna, 

                          Thank you so very much for sharing your information and thoughts… I did not think you were being negative at all.

                          I'm open to any and all information… I do feel I'm very vigilant with my thinking.. I do know they can come back anytime.

                          I have also had extensive lymphadema therapy by a lymphadema specialist who also taught my husband how to wrap me time to time .. for added compression (self massage too) 

                          I do also wear a compression garment during the day . Juzo garment for nighttime.

                          Did you ever have trouble bending your knee ? 

                          Sure wish I could talk to more ILP patients… 

                          Thank you again Donna smiley

                          • December 17, 2011 at 11:37 pm
                          Camp Host
                          Participant

                            Donna, 

                            Thank you so very much for sharing your information and thoughts… I did not think you were being negative at all.

                            I'm open to any and all information… I do feel I'm very vigilant with my thinking.. I do know they can come back anytime.

                            I have also had extensive lymphadema therapy by a lymphadema specialist who also taught my husband how to wrap me time to time .. for added compression (self massage too) 

                            I do also wear a compression garment during the day . Juzo garment for nighttime.

                            Did you ever have trouble bending your knee ? 

                            Sure wish I could talk to more ILP patients… 

                            Thank you again Donna smiley

                            • December 17, 2011 at 10:48 pm
                            Vermont_Donna
                            Participant

                              Hi,

                              I had an isolated limb perfusion in 2009 at Mass General and yes they did heat my leg up to 105 degrees while administering the drug melphalen over 5 hours. I have never heard it called an IHLP. Think heating the leg is pretty standard.

                              Having intranist mets means the melanoma is traveling via your lymph system, which is considered systemic melanoma (Janner, or somebody else, correct me if I am wrong). Intransit mets are often too small to show up on scans, mine have been anyways, and I have found each of my new intransits by careful looking and feeling my leg daily. I do have leg lymphadema (10 nodes remeoved) and wear a compression stocking daily and a nighttime compression garment. Plus I do self lymph massage of the leg every day in the shower. I have had extensive lymphadema therapy by a lymphadema specialist when I have needed it.

                              I do have neuropathy from my knee down. I do have feeling still, but have pins and needles sensations, sometimes shooting pains, aching etc, a variety of neuropathic symptoms. I have just learned to live with it. I have seen a neurologist who did nerve conduction studies and my neuropathy is exacerbated by my type 2 diabetes. He had me do Vitamin B studies and I am wating for the results.

                              I dont mean to be negative about your statements about your melanoma, I just feel that I need to let you know to be vigilant and dont be thinking that this treatment means you dont have to be concerned anymore. You do always need to be on guard for melanoma and perhaps it would be good to learn more about in transit melanoma and the mechanism of how it can spread.

                              Best of luck,

                              Vermont_Donna, stage 3a, NED

                              • December 17, 2011 at 10:48 pm
                              Vermont_Donna
                              Participant

                                Hi,

                                I had an isolated limb perfusion in 2009 at Mass General and yes they did heat my leg up to 105 degrees while administering the drug melphalen over 5 hours. I have never heard it called an IHLP. Think heating the leg is pretty standard.

                                Having intranist mets means the melanoma is traveling via your lymph system, which is considered systemic melanoma (Janner, or somebody else, correct me if I am wrong). Intransit mets are often too small to show up on scans, mine have been anyways, and I have found each of my new intransits by careful looking and feeling my leg daily. I do have leg lymphadema (10 nodes remeoved) and wear a compression stocking daily and a nighttime compression garment. Plus I do self lymph massage of the leg every day in the shower. I have had extensive lymphadema therapy by a lymphadema specialist when I have needed it.

                                I do have neuropathy from my knee down. I do have feeling still, but have pins and needles sensations, sometimes shooting pains, aching etc, a variety of neuropathic symptoms. I have just learned to live with it. I have seen a neurologist who did nerve conduction studies and my neuropathy is exacerbated by my type 2 diabetes. He had me do Vitamin B studies and I am wating for the results.

                                I dont mean to be negative about your statements about your melanoma, I just feel that I need to let you know to be vigilant and dont be thinking that this treatment means you dont have to be concerned anymore. You do always need to be on guard for melanoma and perhaps it would be good to learn more about in transit melanoma and the mechanism of how it can spread.

                                Best of luck,

                                Vermont_Donna, stage 3a, NED

                                • December 17, 2011 at 9:28 pm
                                Camp Host
                                Participant

                                  Donna, 

                                  You mentioned you too have had and ILP did they also cook your leg?? 

                                  Is there a difference in an ILP and an IHLP ? 

                                  What drug did they use? 

                                   

                                   

                                  Are you being followed by a melanoma oncologist?  YES  At first every month  for 3 months then 3 months all with scans and blood work … My MEL bascially was never systemic just in transist , 

                                   What was their determination of success?  Clean scans and blood work… 

                                  I think it was over kill and now  this heavy leg that does not bend and lymphedema (4 nodes removed )

                                   

                                  Do you have any feeling in your leg? I do not yet ….. and none at all in foot  well maybe some in toes however very delayed feeling … 

                                  • December 17, 2011 at 9:28 pm
                                  Camp Host
                                  Participant

                                    Donna, 

                                    You mentioned you too have had and ILP did they also cook your leg?? 

                                    Is there a difference in an ILP and an IHLP ? 

                                    What drug did they use? 

                                     

                                     

                                    Are you being followed by a melanoma oncologist?  YES  At first every month  for 3 months then 3 months all with scans and blood work … My MEL bascially was never systemic just in transist , 

                                     What was their determination of success?  Clean scans and blood work… 

                                    I think it was over kill and now  this heavy leg that does not bend and lymphedema (4 nodes removed )

                                     

                                    Do you have any feeling in your leg? I do not yet ….. and none at all in foot  well maybe some in toes however very delayed feeling … 

                                  • December 17, 2011 at 2:13 am
                                  Vermont_Donna
                                  Participant

                                    Hi,

                                      I had an isolated limb perfusion in 2009. Did not have a knee problem like yours. You can review my profile for more information. Are you being followed by a melanoma oncologist? I reviewed your profile, and saw that you wrote the doctors told you they "got all the cancer" after your ILP. What was their determination of success? ILP's are tough treatments. I have significant neuropathy in my leg from my knee down. There is an 85% success rate. I unfortunately had melanoma return within the year of doing the ILP.

                                    I hope your knee gets better without having to have a knee replacement.

                                    Vermont_Donna,stage 3a, NED

                                    • December 17, 2011 at 2:13 am
                                    Vermont_Donna
                                    Participant

                                      Hi,

                                        I had an isolated limb perfusion in 2009. Did not have a knee problem like yours. You can review my profile for more information. Are you being followed by a melanoma oncologist? I reviewed your profile, and saw that you wrote the doctors told you they "got all the cancer" after your ILP. What was their determination of success? ILP's are tough treatments. I have significant neuropathy in my leg from my knee down. There is an 85% success rate. I unfortunately had melanoma return within the year of doing the ILP.

                                      I hope your knee gets better without having to have a knee replacement.

                                      Vermont_Donna,stage 3a, NED

                                  Viewing 2 reply threads
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