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IL-2 a problem when you have lymphedema
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IL-2 a problem when you have lymphedema

› Forums › General Melanoma Community › IL-2 a problem when you have lymphedema

  • Post
    • June 18, 2011 at 3:17 pm
    ValinMtl
    Participant

      I'm planning (as in hoping) to find a trial that would include IL-2.  Came across a comment recently that said, IL-2 is not a good option if compromised from the ILP, LND and lymphedema. The toxicity could pool there and necessitate amputation, or could cause death.  I have not had an ILP because lymphedema was bad in my right leg, exactly the location where my sub-qs (growing daily) are located.  Has anybody heard this, any thoughts would be much appreciated.  Val, stage IV, failed ipi, looking for new trial

      I'm planning (as in hoping) to find a trial that would include IL-2.  Came across a comment recently that said, IL-2 is not a good option if compromised from the ILP, LND and lymphedema. The toxicity could pool there and necessitate amputation, or could cause death.  I have not had an ILP because lymphedema was bad in my right leg, exactly the location where my sub-qs (growing daily) are located.  Has anybody heard this, any thoughts would be much appreciated.  Val, stage IV, failed ipi, looking for new trial

    Viewing 9 reply threads
    • Replies
        • June 18, 2011 at 4:37 pm
        killmel
        Participant

          Val,

           

          I have been away for awhile so I am so sorry to hear you failed IPI.

           

          I hope that mel has not spread. Do you have more sub q since taking IPI?? How many.

           

          I do not know much about IL2 but pray you will find another trial. Maybe others could help if you post an update on what is happening with you.

           

          Prayers sent out to you

          Jan

            • June 18, 2011 at 8:33 pm
            ValinMtl
            Participant

              Thanks Jan.  My sub-qs are growing and more are popping up…sucks!!  I am getting closer to choosing a trial…it has to be very carefully chosen…I was terribly depressed when last hospital stay they sent me home with morphine and a rush referral to palliative radiation for lymph node, booted off the ipi trial and then came home to read that Sharyn had passed away (she was so vivacious) but I'm snapping out of it and have been very very busy on the telephone and internet.  The only trial now available to me in Montreal is 2-arm and not much to my liking so I'm looking around for IL-2 or biochem.  By the way, I'm not doing the palliative radiation yet…the antibiotics seem to have 'calmed' the lymph node and doing radiation would postpone a trial for at least 4 weeks…..

              How is your husband doing?  I believe you are the Jan from OC who was planning to move to Texas to be closer to M.D. Anderson, am I correct?  I haven't spoken to my cousin lately so don't know if you actually did move.  Val xx

              • June 18, 2011 at 8:33 pm
              ValinMtl
              Participant

                Thanks Jan.  My sub-qs are growing and more are popping up…sucks!!  I am getting closer to choosing a trial…it has to be very carefully chosen…I was terribly depressed when last hospital stay they sent me home with morphine and a rush referral to palliative radiation for lymph node, booted off the ipi trial and then came home to read that Sharyn had passed away (she was so vivacious) but I'm snapping out of it and have been very very busy on the telephone and internet.  The only trial now available to me in Montreal is 2-arm and not much to my liking so I'm looking around for IL-2 or biochem.  By the way, I'm not doing the palliative radiation yet…the antibiotics seem to have 'calmed' the lymph node and doing radiation would postpone a trial for at least 4 weeks…..

                How is your husband doing?  I believe you are the Jan from OC who was planning to move to Texas to be closer to M.D. Anderson, am I correct?  I haven't spoken to my cousin lately so don't know if you actually did move.  Val xx

              • June 18, 2011 at 4:37 pm
              killmel
              Participant

                Val,

                 

                I have been away for awhile so I am so sorry to hear you failed IPI.

                 

                I hope that mel has not spread. Do you have more sub q since taking IPI?? How many.

                 

                I do not know much about IL2 but pray you will find another trial. Maybe others could help if you post an update on what is happening with you.

                 

                Prayers sent out to you

                Jan

                • June 18, 2011 at 5:14 pm
                lhaley
                Participant

                  Val,

                  Sharyn often posted that she wasn't doing IL2 because of  the ILP. Not sure about lymphdema.  I hope someone can answer for you.  You might want to call your Mel specialist and get his thoughts.  If he can't answer because they don't have IL2 centers in your area you might want to just call a hospital that does and maybe a Dr would be good enough to answer for you.

                  I hope you get the answers to stop your mel quickly,

                  Linda

                    • June 18, 2011 at 8:18 pm
                    ValinMtl
                    Participant

                      That's exactly the problem Linda..they don't have IL-2 up in Montreal so I don't believe my doctor would be familiar with this.  Gosh, they did have it here as a trial a long time ago, I remember reading about a gentleman who is now NED for years..wish they had it now.  But no sense in searching for IL-2 when I can't have it, it might just apply to the ILP or this comment I read might not apply whatsoever (that would be nice!!!!).  I'm hoping there is somebody on the chatline with lymphedema has had IL-2 and can put my mind at rest.  Good idea about clarifying with a doctor in another location.  Dr. Chapman and Dr. Weber have been kind enough in the past to answer questions.

                      God bless our Newfie, I think of her often.  Val

                      • June 18, 2011 at 8:18 pm
                      ValinMtl
                      Participant

                        That's exactly the problem Linda..they don't have IL-2 up in Montreal so I don't believe my doctor would be familiar with this.  Gosh, they did have it here as a trial a long time ago, I remember reading about a gentleman who is now NED for years..wish they had it now.  But no sense in searching for IL-2 when I can't have it, it might just apply to the ILP or this comment I read might not apply whatsoever (that would be nice!!!!).  I'm hoping there is somebody on the chatline with lymphedema has had IL-2 and can put my mind at rest.  Good idea about clarifying with a doctor in another location.  Dr. Chapman and Dr. Weber have been kind enough in the past to answer questions.

                        God bless our Newfie, I think of her often.  Val

                      • June 18, 2011 at 5:14 pm
                      lhaley
                      Participant

                        Val,

                        Sharyn often posted that she wasn't doing IL2 because of  the ILP. Not sure about lymphdema.  I hope someone can answer for you.  You might want to call your Mel specialist and get his thoughts.  If he can't answer because they don't have IL2 centers in your area you might want to just call a hospital that does and maybe a Dr would be good enough to answer for you.

                        I hope you get the answers to stop your mel quickly,

                        Linda

                        • June 18, 2011 at 7:29 pm
                        boot2aboot
                        Participant

                          this is a question for your doctors…i have never heard of interleukin 2 worsens lymphodema…

                          • June 18, 2011 at 7:29 pm
                          boot2aboot
                          Participant

                            this is a question for your doctors…i have never heard of interleukin 2 worsens lymphodema…

                              • June 18, 2011 at 8:34 pm
                              ValinMtl
                              Participant

                                I had never heard of that either…so let's hope the comment applied to a combination of both ILP and lymphedema….

                                • June 18, 2011 at 9:01 pm
                                killmel
                                Participant

                                  Hi Val,

                                   

                                  Have you thought of ONCOVEX trial or PV-10 Rose Bengal…..I think that is when they inject suqs.

                                  How many subq are in your leg??? Do you have another areas with mel.

                                  Good Luck with whatever trial yoou pick.

                                  Grace

                                   

                                   

                                  • June 18, 2011 at 10:48 pm
                                  boot2aboot
                                  Participant

                                    interleukin 2 has a proven track record…if i go stage 4 i will seriously consider this as it is an option for me…as it stands i am stage 3 and have lymphadema of right breast…i will be receiving interleukin2, interferon, cisplatin, vinblastin and leukin all at once and if the doctors thought it would kill me they wouldn't offer it as it is a teaching hospital and not one of those private hospitals where they give you whatever you want if you have the money for  it…then again a masectomy is much easier than leg amputation…are you from canada? this is one time i am glad i live in the states…they are much more progressive when it comes to mel treatments…if you are considering IL2…there are hospitals that are certified in the states for administering it…that is where you need to go…or find a clinical trial that combos the drug with something else…i was told if the mel is aggressive, immunotherapy needs to be combined with a chemo drug…one, two punch as it takes awhile for immune response…i was also told the oncovex trial is…dead…whatever that means…i was told this from some clinical trial guy at UofM…i assume that he has seen the numbers so far and so far numbers aren't good…this is a total assumption on my part…but i didn't pursue it after the guy put the kabosh on it…the guy's name is redman from uofm…

                                    boots

                                    • June 18, 2011 at 10:48 pm
                                    boot2aboot
                                    Participant

                                      interleukin 2 has a proven track record…if i go stage 4 i will seriously consider this as it is an option for me…as it stands i am stage 3 and have lymphadema of right breast…i will be receiving interleukin2, interferon, cisplatin, vinblastin and leukin all at once and if the doctors thought it would kill me they wouldn't offer it as it is a teaching hospital and not one of those private hospitals where they give you whatever you want if you have the money for  it…then again a masectomy is much easier than leg amputation…are you from canada? this is one time i am glad i live in the states…they are much more progressive when it comes to mel treatments…if you are considering IL2…there are hospitals that are certified in the states for administering it…that is where you need to go…or find a clinical trial that combos the drug with something else…i was told if the mel is aggressive, immunotherapy needs to be combined with a chemo drug…one, two punch as it takes awhile for immune response…i was also told the oncovex trial is…dead…whatever that means…i was told this from some clinical trial guy at UofM…i assume that he has seen the numbers so far and so far numbers aren't good…this is a total assumption on my part…but i didn't pursue it after the guy put the kabosh on it…the guy's name is redman from uofm…

                                      boots

                                      • June 19, 2011 at 2:32 am
                                      ValinMtl
                                      Participant

                                        Hi Grace, I have thought of the oncovex trial but because of the lymph node problem and new sub-qs popping up daily.  Plus some really nasty ones that need constant care to stay under control, I agree with 'boots'…it doesn't have the punch I need. 

                                        • June 19, 2011 at 2:32 am
                                        ValinMtl
                                        Participant

                                          Hi Grace, I have thought of the oncovex trial but because of the lymph node problem and new sub-qs popping up daily.  Plus some really nasty ones that need constant care to stay under control, I agree with 'boots'…it doesn't have the punch I need. 

                                          • June 19, 2011 at 6:17 am
                                          FormerCaregiver
                                          Participant

                                            Grace, thanks for mentioning PV-10 (Rose Bengal). I found some info about it at:
                                            http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                            This is an old video about PV-10: http://www.youtube.com/watch?v=HSjoev_q9Nw

                                            The company's website is at: http://www.pvct.com/

                                            Hope this helps

                                            Frank from Australia

                                            • June 19, 2011 at 6:17 am
                                            FormerCaregiver
                                            Participant

                                              Grace, thanks for mentioning PV-10 (Rose Bengal). I found some info about it at:
                                              http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                              This is an old video about PV-10: http://www.youtube.com/watch?v=HSjoev_q9Nw

                                              The company's website is at: http://www.pvct.com/

                                              Hope this helps

                                              Frank from Australia

                                              • June 18, 2011 at 9:01 pm
                                              killmel
                                              Participant

                                                Hi Val,

                                                 

                                                Have you thought of ONCOVEX trial or PV-10 Rose Bengal…..I think that is when they inject suqs.

                                                How many subq are in your leg??? Do you have another areas with mel.

                                                Good Luck with whatever trial yoou pick.

                                                Grace

                                                 

                                                 

                                                • June 18, 2011 at 8:34 pm
                                                ValinMtl
                                                Participant

                                                  I had never heard of that either…so let's hope the comment applied to a combination of both ILP and lymphedema….

                                                  • June 18, 2011 at 11:13 pm
                                                  lhaley
                                                  Participant

                                                    I don't think it's that the IL2 would make the lymphedema worse, it's the toxins puddling in the one area and becoming toxic.  The question is would lymphedemia do that.  It is believed that having had an ILP would possibly do that.  A Dr would be able to answer this, plus you would have to be examined because each persons case is individual. 

                                                    • June 18, 2011 at 11:13 pm
                                                    lhaley
                                                    Participant

                                                      I don't think it's that the IL2 would make the lymphedema worse, it's the toxins puddling in the one area and becoming toxic.  The question is would lymphedemia do that.  It is believed that having had an ILP would possibly do that.  A Dr would be able to answer this, plus you would have to be examined because each persons case is individual. 

                                                    • June 18, 2011 at 11:13 pm
                                                    melissa ann
                                                    Participant

                                                      Hi Val,

                                                      My husband has recently finished course 2 of his IL2 protocol.  One more course to go!  He has significant lymphadema in his right arm due to a LND and some more extensive surgery 6 years ago.  HIs lymphadema has not been a problem at all during IL2.  He is meticulous about wearing a compression sleeve during the day and a REED sleeve at night (even during IL2).  We wish you the best in choosing your next treatment option. Peace to you!  Melissa

                                                      • June 18, 2011 at 11:13 pm
                                                      melissa ann
                                                      Participant

                                                        Hi Val,

                                                        My husband has recently finished course 2 of his IL2 protocol.  One more course to go!  He has significant lymphadema in his right arm due to a LND and some more extensive surgery 6 years ago.  HIs lymphadema has not been a problem at all during IL2.  He is meticulous about wearing a compression sleeve during the day and a REED sleeve at night (even during IL2).  We wish you the best in choosing your next treatment option. Peace to you!  Melissa

                                                        • June 19, 2011 at 2:49 am
                                                        ValinMtl
                                                        Participant

                                                          Thanks everybody.  I'm feeling better, I think it is the ILP that caused the IL-2 problem, of course I will confirm with doctor if I get accepted into an IL-2 trial.  I just panicked today when I saw the note I had saved from a while back!!  Linda, your input is always appreciated. Melissa Ann thank you for responding. So sorry that your husband has had to take IL-2 but good news is that when you respond…wow!!  Will keep him in my thoughts and prayers.

                                                          Val xx

                                                          • June 19, 2011 at 2:49 am
                                                          ValinMtl
                                                          Participant

                                                            Thanks everybody.  I'm feeling better, I think it is the ILP that caused the IL-2 problem, of course I will confirm with doctor if I get accepted into an IL-2 trial.  I just panicked today when I saw the note I had saved from a while back!!  Linda, your input is always appreciated. Melissa Ann thank you for responding. So sorry that your husband has had to take IL-2 but good news is that when you respond…wow!!  Will keep him in my thoughts and prayers.

                                                            Val xx

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