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Experience with IL2 Treatment (Interleukin)

Forums General Melanoma Community Experience with IL2 Treatment (Interleukin)

  • Post
    Keri W
    Participant

      I am trying to get information regarding the IL2 treatment.  My brother was referred to Duke University for the IL2 treatment.  From the infomration I have read, the treatment is grueling, but the effects are temporary.  I live in Louisiana and I am trying to decide if he will need someone with him as he undergoes the treatment.  I would love to hear from anyone who has undergone this treatment, so I will have a better idea of what to expect. 

      I am trying to get information regarding the IL2 treatment.  My brother was referred to Duke University for the IL2 treatment.  From the infomration I have read, the treatment is grueling, but the effects are temporary.  I live in Louisiana and I am trying to decide if he will need someone with him as he undergoes the treatment.  I would love to hear from anyone who has undergone this treatment, so I will have a better idea of what to expect. 

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        esposir2
        Participant

          Hello I had the IL-2 treatment and have do say it is a very tough treatment, I had all the side effects, mouth sores, fluid retention and diarrhea. I was very weak and had skin peeling for some time.  I gained about 30 pounds of fluid in the two weeks of treatment.Side effects  do resolve when the treatment is over. I was pretty sick and did need help caring for myself for a short time ,It did not work for me but I hear if you respond it is a wonderful treatment. Good luck with it .

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            Keri W
            Participant

              Where did you receive your treatment?  Was it for five days and then off for two weeks?  Thank you for responding.  It is so helpful to hear from people who have experience it. 

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              esposir2
              Participant

                I had treatment at Yale New Haven Hospital, 5 days in, a week off and then 5 days in again. Then  a scan and no response to treatment so they stopped..

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                esposir2
                Participant

                  I had treatment at Yale New Haven Hospital, 5 days in, a week off and then 5 days in again. Then  a scan and no response to treatment so they stopped..

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                  Keri W
                  Participant

                    Where did you receive your treatment?  Was it for five days and then off for two weeks?  Thank you for responding.  It is so helpful to hear from people who have experience it. 

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                  esposir2
                  Participant

                    Hello I had the IL-2 treatment and have do say it is a very tough treatment, I had all the side effects, mouth sores, fluid retention and diarrhea. I was very weak and had skin peeling for some time.  I gained about 30 pounds of fluid in the two weeks of treatment.Side effects  do resolve when the treatment is over. I was pretty sick and did need help caring for myself for a short time ,It did not work for me but I hear if you respond it is a wonderful treatment. Good luck with it .

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                    SandraDee
                    Participant

                      First and foremost, IL-2 can be a magic bullet and not a temporary fix in some cases.  Check out Jane's story at http://www.operationsunshield.org.  She is a prime example for whom the magic bullet worked, and she, coincidentally, was treated at Duke University.

                      Yes, you should plan to have somebody stay with your brother through his treatment. 

                      I had 3 rounds (6 weeks) of IL-2 myself starting in October of 07.  I have been stable and holding at Stage IV ever since.  I was what they consider a "partial responder".  Yes, it was grueling…I cannot paint a rosey picture of the treatment, but if your brother goes into it with knowledge of what to expect and what to ask for for each side effect, he'll get through it a bit easier.  Again, Janes website gives detailed information on what to bring to the hospital, what to expect, what the side effects are and how to best tolerate them. 

                      There are several great folks who past on this board for whom IL-2 did the trick!  Your brother can fall into that group too.

                      I'm sure others will chime in as well.  If you want to chat further, you can email me at [email protected].

                      Sandy – Buffalo

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                        Keri W
                        Participant

                          Thank you so much for sharing your story.  We are optimistic that it will be the magic bullet.  His treatment plan will be five days and then he will go home for two weeks.  He will return for another five days and return home again for two weeks.  Was this similar to what you experienced?  If so, were you able to resume your normal activities, such as work, during the two weeks? 

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                          SandraDee
                          Participant

                            Keri:

                            You are so welcome.  I like to be able to pass the knowledge I've gained onto others who are starting this journey. 

                            Yes, that is the same schedule I was on here in Buffalo, NY.  Although you do bounce back rather quiclky once you are home, I wouldn't plan on your brother going back to work between rounds.  I ceratinly could not have.  It takes a few days to catch up on sleep and to get the other side effects (itching, peeling, general weakness) back under control.  Also, it is best to return as strong as possible for the next treatment, so some pampering and R&R is really important.

                            I am now back to work part-time and have been for almost 2 years.  So, remind your brother that life does get back to "normal" eventually.  I will be praying that he responds to the IL-2!!!

                            Very importantly to know going in is that each week of treatment is so different.  I flew by week #1, walking the halls, up and alert most of the week, and even ordering a pizza on my last night.  Week #2 was much different and more difficult to tolerate…it doesn't necessarily get "worse" each week, but it is a cumulative drug and side effects tend to come on quicker and a bit stronger each subsequent week.  Some are easier than others.

                            A great book, if your brother would be interested, is called "Anti-Cancer – A New Way of Life" by David Servan-Schreiber.  I've read many books since my dx, and this is still on the very top of my list.  There is so much 1 can do to stay strong.  Diet, attitude, spirituality, supplements, herbs, etc…..It's all so important!

                            Hang Tough and let your brother know that I would be happy to talk with him if he would like. 

                            Sandy

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                            Keri W
                            Participant

                              Thank you for the info.  I plan to get the book, because I definitely believe in the holistic approach.  I am glad that you mentioned that each week is is different.  It is encouraging to hear from those who have endured the treatment and have returned to a normal life. 

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                              Keri W
                              Participant

                                Thank you for the info.  I plan to get the book, because I definitely believe in the holistic approach.  I am glad that you mentioned that each week is is different.  It is encouraging to hear from those who have endured the treatment and have returned to a normal life. 

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                                SandraDee
                                Participant

                                  Keri:

                                  You are so welcome.  I like to be able to pass the knowledge I've gained onto others who are starting this journey. 

                                  Yes, that is the same schedule I was on here in Buffalo, NY.  Although you do bounce back rather quiclky once you are home, I wouldn't plan on your brother going back to work between rounds.  I ceratinly could not have.  It takes a few days to catch up on sleep and to get the other side effects (itching, peeling, general weakness) back under control.  Also, it is best to return as strong as possible for the next treatment, so some pampering and R&R is really important.

                                  I am now back to work part-time and have been for almost 2 years.  So, remind your brother that life does get back to "normal" eventually.  I will be praying that he responds to the IL-2!!!

                                  Very importantly to know going in is that each week of treatment is so different.  I flew by week #1, walking the halls, up and alert most of the week, and even ordering a pizza on my last night.  Week #2 was much different and more difficult to tolerate…it doesn't necessarily get "worse" each week, but it is a cumulative drug and side effects tend to come on quicker and a bit stronger each subsequent week.  Some are easier than others.

                                  A great book, if your brother would be interested, is called "Anti-Cancer – A New Way of Life" by David Servan-Schreiber.  I've read many books since my dx, and this is still on the very top of my list.  There is so much 1 can do to stay strong.  Diet, attitude, spirituality, supplements, herbs, etc…..It's all so important!

                                  Hang Tough and let your brother know that I would be happy to talk with him if he would like. 

                                  Sandy

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                                  KatyWI
                                  Participant

                                    Keri,

                                    I too had three cycles of IL-2 (1 cycle = 2 weeklong trips to the hospital).  I wanted to address your question about working in between weeks of IL-2.  I found that I was useless for 5 or so days once I got out of the hospital but was able to work after that.  For instance, I got out of the hospital on Saturday, worked from home on thursday, and went back in on Friday.  I then worked the entire following week.  I have a desk job so it's not terribly grueling.

                                    good luck, I hope it works for him!

                                    KatyWI

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                                    KatyWI
                                    Participant

                                      Keri,

                                      I too had three cycles of IL-2 (1 cycle = 2 weeklong trips to the hospital).  I wanted to address your question about working in between weeks of IL-2.  I found that I was useless for 5 or so days once I got out of the hospital but was able to work after that.  For instance, I got out of the hospital on Saturday, worked from home on thursday, and went back in on Friday.  I then worked the entire following week.  I have a desk job so it's not terribly grueling.

                                      good luck, I hope it works for him!

                                      KatyWI

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                                      Keri W
                                      Participant

                                        Thank you so much for sharing your story.  We are optimistic that it will be the magic bullet.  His treatment plan will be five days and then he will go home for two weeks.  He will return for another five days and return home again for two weeks.  Was this similar to what you experienced?  If so, were you able to resume your normal activities, such as work, during the two weeks? 

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                                      SandraDee
                                      Participant

                                        First and foremost, IL-2 can be a magic bullet and not a temporary fix in some cases.  Check out Jane's story at http://www.operationsunshield.org.  She is a prime example for whom the magic bullet worked, and she, coincidentally, was treated at Duke University.

                                        Yes, you should plan to have somebody stay with your brother through his treatment. 

                                        I had 3 rounds (6 weeks) of IL-2 myself starting in October of 07.  I have been stable and holding at Stage IV ever since.  I was what they consider a "partial responder".  Yes, it was grueling…I cannot paint a rosey picture of the treatment, but if your brother goes into it with knowledge of what to expect and what to ask for for each side effect, he'll get through it a bit easier.  Again, Janes website gives detailed information on what to bring to the hospital, what to expect, what the side effects are and how to best tolerate them. 

                                        There are several great folks who past on this board for whom IL-2 did the trick!  Your brother can fall into that group too.

                                        I'm sure others will chime in as well.  If you want to chat further, you can email me at [email protected].

                                        Sandy – Buffalo

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                                        mkummerle
                                        Participant

                                          What part of Lousiana?  I just completed treatment in Dallas.  Might be closer for you.  It was at UT Southwestern.

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                                          mkummerle
                                          Participant

                                            What part of Lousiana?  I just completed treatment in Dallas.  Might be closer for you.  It was at UT Southwestern.

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                                              Keri W
                                              Participant

                                                I live in Amite, Louisiana (Southeast Louisiana), but my brother lives in Charleston, SC.  We wish that he could be closer to us while taking the treatment, but his insurance will not allow it.  Also, I think Duke is suppose to be one of the best medical centers in the nation for treating melanoma. 

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                                                Keri W
                                                Participant

                                                  I live in Amite, Louisiana (Southeast Louisiana), but my brother lives in Charleston, SC.  We wish that he could be closer to us while taking the treatment, but his insurance will not allow it.  Also, I think Duke is suppose to be one of the best medical centers in the nation for treating melanoma. 

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