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Starting IL-2

Forums General Melanoma Community Starting IL-2

  • Post
    tennisgirl
    Participant

      Hi everyone.  I sure enjoy reading all the posts and gleening all this helpful information.   This board gives me encouragement and hope.  I have failed GSK BRAF/MEK and now will try IL-2 starting on Monday.  Who was it on this board that is NED after IL-2 and had a lot of helpful advice on how to get through it, what to take to the hospital, etc…??  I would sure appreciate their email.  I can't seem to find the post.   Thank you for responding!  Keep on keeping on.

       

      Marian

      Hi everyone.  I sure enjoy reading all the posts and gleening all this helpful information.   This board gives me encouragement and hope.  I have failed GSK BRAF/MEK and now will try IL-2 starting on Monday.  Who was it on this board that is NED after IL-2 and had a lot of helpful advice on how to get through it, what to take to the hospital, etc…??  I would sure appreciate their email.  I can't seem to find the post.   Thank you for responding!  Keep on keeping on.

       

      Marian

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    • Replies
        Janner
        Participant

          I have links to info that people have posted in the past on my website linked in my signature.  Look under Patient Perspectives for a few links there.

          Best wishes,

          Janner

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          Janner
          Participant

            I have links to info that people have posted in the past on my website linked in my signature.  Look under Patient Perspectives for a few links there.

            Best wishes,

            Janner

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            KatyWI
            Participant

              You're looking for Janefrommaine!  Her tipsheet is here:

              http://www.operationsunshield.org/tipsheet.html

              she's not the only one here who got to NED via IL-2 (KimK is another one that springs to mind) but Jane is one of the earliest complete responsders I know of.

              Good luck with the IL-2…rough stuff but DOABLE and we're here to help.

              KatyWI

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                tennisgirl
                Participant

                  Thank you both for your fast replys! 

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                  tennisgirl
                  Participant

                    Thank you both for your fast replys! 

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                    lhaley
                    Participant

                      Debbie from Va is always willing to talk to others about her experience. I think she is 3 years NED now.  There is also Rick from NC, he is something like 19 years NED! 

                      Wishing you the best!

                      Linda

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                      lhaley
                      Participant

                        Debbie from Va is always willing to talk to others about her experience. I think she is 3 years NED now.  There is also Rick from NC, he is something like 19 years NED! 

                        Wishing you the best!

                        Linda

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                        debbieVA
                        Participant

                          Thanks Linda….hope you are doing well.  Blessings!  

                          debbieVA

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                          debbieVA
                          Participant

                            Thanks Linda….hope you are doing well.  Blessings!  

                            debbieVA

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                          KatyWI
                          Participant

                            You're looking for Janefrommaine!  Her tipsheet is here:

                            http://www.operationsunshield.org/tipsheet.html

                            she's not the only one here who got to NED via IL-2 (KimK is another one that springs to mind) but Jane is one of the earliest complete responsders I know of.

                            Good luck with the IL-2…rough stuff but DOABLE and we're here to help.

                            KatyWI

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                            debbieVA
                            Participant

                              Hi there Marian…

                               

                              I am living proof that IL-2 can save a life.  I was diagnosed in 2006, unstaged no primary, and progressed to Stage 4 with in 9 months.  You can read my bio under debbieVA.  

                              IL-2 is a butt kicker, but I'm hoping it will be your magic bullet.  I will be happy to talk with you, anytime.  

                               

                              My E-Mail is [email protected].  Feel free to contact me.  Wishing you the best.  

                               

                              Debbie Stage 4 NED, Complete Responder to IL-2

                               

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                              debbieVA
                              Participant

                                Hi there Marian…

                                 

                                I am living proof that IL-2 can save a life.  I was diagnosed in 2006, unstaged no primary, and progressed to Stage 4 with in 9 months.  You can read my bio under debbieVA.  

                                IL-2 is a butt kicker, but I'm hoping it will be your magic bullet.  I will be happy to talk with you, anytime.  

                                 

                                My E-Mail is [email protected].  Feel free to contact me.  Wishing you the best.  

                                 

                                Debbie Stage 4 NED, Complete Responder to IL-2

                                 

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                                kylez
                                Participant

                                  Hi Marian,

                                  I'm also glad to be NED in my lungs and body, after 2 courses / 4 cycles of IL-2 in 2010.

                                  The first cycle will be an introduction in terms of experiencing it first-hand and learning how it goes for you.

                                  – walk as much as possible during treatment to keep your GI tract active, meaning force yourself to walk around with IV pole even a few times a day if you can.

                                  – if UCSF's food is better than Kaiser's you may be OK. Otherwise, I found I sometimes craved (small amounts of) food that wasn't antiseptically dull or cold. If it's the Mt. Zion center there's a lot of takeout around, chinese, mexican, etc. Having someone bring in some takeout might be worth a shot if you're feeling that way.

                                  – Kaiser didn't have WIFI, if UCSF does that may be a helpful distraction for the first day before the IL-2 kicks in and the last day recovering from the last doses but not much else in between. While the IL-2 is going, company and TV your lifeline (as opposed to active activities like reading, crosswords, etc.).

                                  – Depending on how your taste reacts to the water you may be fine, or you may want someone to bring in a supply of your own favorite water or beverage.

                                  – You'll probably want to take it very very slow for a couple of weeks after each cycle — I did.

                                  Good luck and hang in there!

                                  Kyle

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                                  kylez
                                  Participant

                                    Hi Marian,

                                    I'm also glad to be NED in my lungs and body, after 2 courses / 4 cycles of IL-2 in 2010.

                                    The first cycle will be an introduction in terms of experiencing it first-hand and learning how it goes for you.

                                    – walk as much as possible during treatment to keep your GI tract active, meaning force yourself to walk around with IV pole even a few times a day if you can.

                                    – if UCSF's food is better than Kaiser's you may be OK. Otherwise, I found I sometimes craved (small amounts of) food that wasn't antiseptically dull or cold. If it's the Mt. Zion center there's a lot of takeout around, chinese, mexican, etc. Having someone bring in some takeout might be worth a shot if you're feeling that way.

                                    – Kaiser didn't have WIFI, if UCSF does that may be a helpful distraction for the first day before the IL-2 kicks in and the last day recovering from the last doses but not much else in between. While the IL-2 is going, company and TV your lifeline (as opposed to active activities like reading, crosswords, etc.).

                                    – Depending on how your taste reacts to the water you may be fine, or you may want someone to bring in a supply of your own favorite water or beverage.

                                    – You'll probably want to take it very very slow for a couple of weeks after each cycle — I did.

                                    Good luck and hang in there!

                                    Kyle

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                                    Rick from NC
                                    Participant

                                      Marian,

                                      Best wishes to you as you begin IL-2.  It certainly worked for me, and that was in 1992!  As others have said, it's not easy, but I'd certainly do it all over again.  Jane's tips will be helpful to you.  Keep us informed, and ask whatever questions you want to.

                                      Rick from NC

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                                      Rick from NC
                                      Participant

                                        Marian,

                                        Best wishes to you as you begin IL-2.  It certainly worked for me, and that was in 1992!  As others have said, it's not easy, but I'd certainly do it all over again.  Jane's tips will be helpful to you.  Keep us informed, and ask whatever questions you want to.

                                        Rick from NC

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                                        Suzan AB
                                        Participant

                                          Good  Luck Marian,

                                          I am recoping from a lung resection…it was not bad at all and I was out of hospital in 48 hours.  I have one month to make my decision on a treatment plan (of course with doctor imput) and I am leaning toward IL-2 with Braf.  I am hoping it will be a one-two sucker punch to this "Beast".  I am Braf positive (K) no MeK.  

                                          So my dear Melanoma Sista, good luck and to those who posted about this topic…thank you berry much!

                                          My best to all…Suzan AB  

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                                          Suzan AB
                                          Participant

                                            Good  Luck Marian,

                                            I am recoping from a lung resection…it was not bad at all and I was out of hospital in 48 hours.  I have one month to make my decision on a treatment plan (of course with doctor imput) and I am leaning toward IL-2 with Braf.  I am hoping it will be a one-two sucker punch to this "Beast".  I am Braf positive (K) no MeK.  

                                            So my dear Melanoma Sista, good luck and to those who posted about this topic…thank you berry much!

                                            My best to all…Suzan AB  

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                                            Kim K
                                            Participant

                                              Wishing you the best of luck!

                                              It is still working for me.  It was the best month spent kicking mel's ass.  Granted, the IL-2 kicked mine.  On a good note, you know those heel cracks we somethimes get, the skin sloughing took care of it once and for all!

                                              You can look for my old posts from the middle of May 2010 – July 2010 since that is when I went through IL-2.  They will take you to the edge of death an then snatch you back in time to do it all over again.  I had a great team, but on the second part I had to quit at 10 bags.  I had a cold and my throat was sooooo sore, my lungs full of fluid, I couldn't breathe without feeling like I was suffocating.  They said I was OK to take more, but deep down I knew if I did, I would be on a respirator.

                                              Best of luck, the recovery is rapid.  The tiredness and skin peeling take the longest to get over.  I quit eating by the second day and never got my appetite back until around a week – 10 days after my last treatment.  We are pulling for you, hope to have you join our 6% club.

                                              Keep in touch,

                                              Kim

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                                              Kim K
                                              Participant

                                                Wishing you the best of luck!

                                                It is still working for me.  It was the best month spent kicking mel's ass.  Granted, the IL-2 kicked mine.  On a good note, you know those heel cracks we somethimes get, the skin sloughing took care of it once and for all!

                                                You can look for my old posts from the middle of May 2010 – July 2010 since that is when I went through IL-2.  They will take you to the edge of death an then snatch you back in time to do it all over again.  I had a great team, but on the second part I had to quit at 10 bags.  I had a cold and my throat was sooooo sore, my lungs full of fluid, I couldn't breathe without feeling like I was suffocating.  They said I was OK to take more, but deep down I knew if I did, I would be on a respirator.

                                                Best of luck, the recovery is rapid.  The tiredness and skin peeling take the longest to get over.  I quit eating by the second day and never got my appetite back until around a week – 10 days after my last treatment.  We are pulling for you, hope to have you join our 6% club.

                                                Keep in touch,

                                                Kim

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