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Starting IL-2 treatment soon
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Starting IL-2 treatment soon

› Forums › General Melanoma Community › Starting IL-2 treatment soon

  • Post
    • April 18, 2014 at 1:17 pm
    mark1101
    Participant

      Aynone who has already gone through Il-2 able to tell me what the treatment was like and how side effects impacted them?

    Viewing 20 reply threads
    • Replies
        • April 18, 2014 at 2:29 pm
        Cooper
        Participant

          Had to be in intensive care, with lots of side effects, chills, vomiting, awful time.  And had recur 6 months later.  Have you been offered other options?  Braf? IPI?

            • April 18, 2014 at 3:02 pm
            mark1101
            Participant

              Ipi failed for me at about 8 months into treatment.  I am on Zelboraf right now as part of a sequencing trial to study the benefits of IL-2 taken in sequence with BRAF meds.  I understand the IL-2 treatment can be tough.

              • April 18, 2014 at 3:02 pm
              mark1101
              Participant

                Ipi failed for me at about 8 months into treatment.  I am on Zelboraf right now as part of a sequencing trial to study the benefits of IL-2 taken in sequence with BRAF meds.  I understand the IL-2 treatment can be tough.

                • April 18, 2014 at 3:02 pm
                mark1101
                Participant

                  Ipi failed for me at about 8 months into treatment.  I am on Zelboraf right now as part of a sequencing trial to study the benefits of IL-2 taken in sequence with BRAF meds.  I understand the IL-2 treatment can be tough.

                  • April 18, 2014 at 3:05 pm
                  JoshF
                  Participant

                    Did you intially go NED with the IL-2? Where was your recurrence?

                    • April 18, 2014 at 3:24 pm
                    Cooper
                    Participant

                      Had tumors come back over the following six months. No response to IL2

                      • April 18, 2014 at 3:24 pm
                      Cooper
                      Participant

                        Had tumors come back over the following six months. No response to IL2

                        • April 18, 2014 at 3:27 pm
                        JoshF
                        Participant

                          No response at all or did IL-2 shrink tumors to only have them come back? Just curious at to whether you had partial response before IL-2 failure. What were treatments after IL-2?

                          • April 18, 2014 at 3:27 pm
                          JoshF
                          Participant

                            No response at all or did IL-2 shrink tumors to only have them come back? Just curious at to whether you had partial response before IL-2 failure. What were treatments after IL-2?

                            • April 18, 2014 at 5:07 pm
                            Cooper
                            Participant

                              No tumor shrinkage.  On IPI now. plan to go for PD1 next if needed

                              • April 18, 2014 at 5:07 pm
                              Cooper
                              Participant

                                No tumor shrinkage.  On IPI now. plan to go for PD1 next if needed

                                • April 18, 2014 at 5:07 pm
                                Cooper
                                Participant

                                  No tumor shrinkage.  On IPI now. plan to go for PD1 next if needed

                                  • April 18, 2014 at 3:27 pm
                                  JoshF
                                  Participant

                                    No response at all or did IL-2 shrink tumors to only have them come back? Just curious at to whether you had partial response before IL-2 failure. What were treatments after IL-2?

                                    • April 18, 2014 at 3:24 pm
                                    Cooper
                                    Participant

                                      Had tumors come back over the following six months. No response to IL2

                                      • April 18, 2014 at 3:05 pm
                                      JoshF
                                      Participant

                                        Did you intially go NED with the IL-2? Where was your recurrence?

                                        • April 18, 2014 at 3:05 pm
                                        JoshF
                                        Participant

                                          Did you intially go NED with the IL-2? Where was your recurrence?

                                          • April 20, 2014 at 2:45 pm
                                          mark1101
                                          Participant

                                            Sounds like side effects of treatment seem to vary little from patient to patient.  So I think I know what to expect there.  I will be receiving treatment in Seidman Cancer Center, so I am hopeful they are well schooled in handling whatever difficulties I encounter.  I had heard a lot of good outcomes from the Zelboraf/IL-2 sequence so I am hopeful that this will be a likewise for me.  Thanks for all of the feedback.

                                            • April 20, 2014 at 2:45 pm
                                            mark1101
                                            Participant

                                              Sounds like side effects of treatment seem to vary little from patient to patient.  So I think I know what to expect there.  I will be receiving treatment in Seidman Cancer Center, so I am hopeful they are well schooled in handling whatever difficulties I encounter.  I had heard a lot of good outcomes from the Zelboraf/IL-2 sequence so I am hopeful that this will be a likewise for me.  Thanks for all of the feedback.

                                              • April 20, 2014 at 2:45 pm
                                              mark1101
                                              Participant

                                                Sounds like side effects of treatment seem to vary little from patient to patient.  So I think I know what to expect there.  I will be receiving treatment in Seidman Cancer Center, so I am hopeful they are well schooled in handling whatever difficulties I encounter.  I had heard a lot of good outcomes from the Zelboraf/IL-2 sequence so I am hopeful that this will be a likewise for me.  Thanks for all of the feedback.

                                              • April 18, 2014 at 2:29 pm
                                              Cooper
                                              Participant

                                                Had to be in intensive care, with lots of side effects, chills, vomiting, awful time.  And had recur 6 months later.  Have you been offered other options?  Braf? IPI?

                                                • April 18, 2014 at 2:29 pm
                                                Cooper
                                                Participant

                                                  Had to be in intensive care, with lots of side effects, chills, vomiting, awful time.  And had recur 6 months later.  Have you been offered other options?  Braf? IPI?

                                                  • April 18, 2014 at 6:59 pm
                                                  kylez
                                                  Participant

                                                    Hi Mark,

                                                    5-6 days each cycle, and 2 cycles 3 weeks apart = 1 course. Everything in an ICU. I did 2 courses in 2010. Got a PICC line installed for each 5-6 day cycle. Every 8 hours I got another bag of IL-2 through IV. This was my introduction to cancer treatment. 

                                                    I bought an iPad (original, still have it) with the theory I would pass some of the time on the WAN. But a) there was no WAN and b) I was so impacted, tired, not up to thinking much that it would not have gotten used anyway. At various times I had chills, rigors, fever, vomiting/nausea, messed up sleep cycles every 15 minutes for days (last cycle only), constipation, diarrhea, itching are the side effects I got, but other people have reported additional side effects not on my list.

                                                    Back in 2010 before IPI, Zelboraf, etc. were approved I had a choice between biochemo and IL-2 — 8 tumors in my lungs, but none quite big enough for a clinical trial (biggest was .9mm). I was a responder (tumors in lungs disappeared after the first cycle, haven't come back since). Not that i haven't had setbacks since. 

                                                    Good luck with your treatment.

                                                    – Kyle

                                                    • April 18, 2014 at 6:59 pm
                                                    kylez
                                                    Participant

                                                      Hi Mark,

                                                      5-6 days each cycle, and 2 cycles 3 weeks apart = 1 course. Everything in an ICU. I did 2 courses in 2010. Got a PICC line installed for each 5-6 day cycle. Every 8 hours I got another bag of IL-2 through IV. This was my introduction to cancer treatment. 

                                                      I bought an iPad (original, still have it) with the theory I would pass some of the time on the WAN. But a) there was no WAN and b) I was so impacted, tired, not up to thinking much that it would not have gotten used anyway. At various times I had chills, rigors, fever, vomiting/nausea, messed up sleep cycles every 15 minutes for days (last cycle only), constipation, diarrhea, itching are the side effects I got, but other people have reported additional side effects not on my list.

                                                      Back in 2010 before IPI, Zelboraf, etc. were approved I had a choice between biochemo and IL-2 — 8 tumors in my lungs, but none quite big enough for a clinical trial (biggest was .9mm). I was a responder (tumors in lungs disappeared after the first cycle, haven't come back since). Not that i haven't had setbacks since. 

                                                      Good luck with your treatment.

                                                      – Kyle

                                                        • April 18, 2014 at 7:01 pm
                                                        kylez
                                                        Participant

                                                          And, took 2-3 weeks to recover after each cycle (fatigue and itching primarily).

                                                          • April 18, 2014 at 7:01 pm
                                                          kylez
                                                          Participant

                                                            And, took 2-3 weeks to recover after each cycle (fatigue and itching primarily).

                                                            • April 18, 2014 at 7:01 pm
                                                            kylez
                                                            Participant

                                                              And, took 2-3 weeks to recover after each cycle (fatigue and itching primarily).

                                                            • April 18, 2014 at 6:59 pm
                                                            kylez
                                                            Participant

                                                              Hi Mark,

                                                              5-6 days each cycle, and 2 cycles 3 weeks apart = 1 course. Everything in an ICU. I did 2 courses in 2010. Got a PICC line installed for each 5-6 day cycle. Every 8 hours I got another bag of IL-2 through IV. This was my introduction to cancer treatment. 

                                                              I bought an iPad (original, still have it) with the theory I would pass some of the time on the WAN. But a) there was no WAN and b) I was so impacted, tired, not up to thinking much that it would not have gotten used anyway. At various times I had chills, rigors, fever, vomiting/nausea, messed up sleep cycles every 15 minutes for days (last cycle only), constipation, diarrhea, itching are the side effects I got, but other people have reported additional side effects not on my list.

                                                              Back in 2010 before IPI, Zelboraf, etc. were approved I had a choice between biochemo and IL-2 — 8 tumors in my lungs, but none quite big enough for a clinical trial (biggest was .9mm). I was a responder (tumors in lungs disappeared after the first cycle, haven't come back since). Not that i haven't had setbacks since. 

                                                              Good luck with your treatment.

                                                              – Kyle

                                                              • April 18, 2014 at 9:45 pm
                                                              BrianP
                                                              Participant

                                                                Mark,

                                                                Jerryfromfauq did a very thorough account of his IL-2 experience under his profile.  You can find it here:

                                                                http://www.melanoma.org/community/profiles/jerryfromfauq

                                                                 

                                                                Brian

                                                                • April 18, 2014 at 9:45 pm
                                                                BrianP
                                                                Participant

                                                                  Mark,

                                                                  Jerryfromfauq did a very thorough account of his IL-2 experience under his profile.  You can find it here:

                                                                  http://www.melanoma.org/community/profiles/jerryfromfauq

                                                                   

                                                                  Brian

                                                                  • April 18, 2014 at 9:45 pm
                                                                  BrianP
                                                                  Participant

                                                                    Mark,

                                                                    Jerryfromfauq did a very thorough account of his IL-2 experience under his profile.  You can find it here:

                                                                    http://www.melanoma.org/community/profiles/jerryfromfauq

                                                                     

                                                                    Brian

                                                                    • April 19, 2014 at 5:35 am
                                                                    JoshF
                                                                    Participant

                                                                      Mark-

                                                                       

                                                                      If I remember, you're doing the trial through Prometheus Labs? I just finished about 3 months ago..though I did ipi and IL-2. The way IL-2 was administered to me was check in Monday…first dose by 2-3PM up to 12 doses every 8 hours. Then I had week off and went in week 3 for 2nd round…same thing every 8 hours. I did 11 of 12 doses each week. It is as everyone said here….tough but doable. By Tuesday afternoon/evening it started to turn on me….rigors, chills, hallucinations….

                                                                      There was a lot of fatigue during recovery, itchy etc…

                                                                      Stay positive and take Brian's advice…reach out to Jerry from Fauq…he is good resource…I talked to him right before I went in.

                                                                       

                                                                      Best to you!

                                                                       

                                                                      Josh

                                                                      • April 19, 2014 at 5:35 am
                                                                      JoshF
                                                                      Participant

                                                                        Mark-

                                                                         

                                                                        If I remember, you're doing the trial through Prometheus Labs? I just finished about 3 months ago..though I did ipi and IL-2. The way IL-2 was administered to me was check in Monday…first dose by 2-3PM up to 12 doses every 8 hours. Then I had week off and went in week 3 for 2nd round…same thing every 8 hours. I did 11 of 12 doses each week. It is as everyone said here….tough but doable. By Tuesday afternoon/evening it started to turn on me….rigors, chills, hallucinations….

                                                                        There was a lot of fatigue during recovery, itchy etc…

                                                                        Stay positive and take Brian's advice…reach out to Jerry from Fauq…he is good resource…I talked to him right before I went in.

                                                                         

                                                                        Best to you!

                                                                         

                                                                        Josh

                                                                        • April 19, 2014 at 5:35 am
                                                                        JoshF
                                                                        Participant

                                                                          Mark-

                                                                           

                                                                          If I remember, you're doing the trial through Prometheus Labs? I just finished about 3 months ago..though I did ipi and IL-2. The way IL-2 was administered to me was check in Monday…first dose by 2-3PM up to 12 doses every 8 hours. Then I had week off and went in week 3 for 2nd round…same thing every 8 hours. I did 11 of 12 doses each week. It is as everyone said here….tough but doable. By Tuesday afternoon/evening it started to turn on me….rigors, chills, hallucinations….

                                                                          There was a lot of fatigue during recovery, itchy etc…

                                                                          Stay positive and take Brian's advice…reach out to Jerry from Fauq…he is good resource…I talked to him right before I went in.

                                                                           

                                                                          Best to you!

                                                                           

                                                                          Josh

                                                                          • April 19, 2014 at 1:29 pm
                                                                          hdevlin
                                                                          Participant

                                                                            Hi! I went through IL-2 treatment about 2 years ago. My story is posted in the patients stories section of this website, it details my treatment and my recovery afterwards.  I will say it was not the most pleasant experience but the healthcare providers are wonderful at helping you get through it.  I also have a blog, Heatherdevlin.blogspot.com. We detailed each day of treatment as it was happening. 

                                                                            I wish you all the best. Try to be positive and strong!!!

                                                                            • April 19, 2014 at 1:29 pm
                                                                            hdevlin
                                                                            Participant

                                                                              Hi! I went through IL-2 treatment about 2 years ago. My story is posted in the patients stories section of this website, it details my treatment and my recovery afterwards.  I will say it was not the most pleasant experience but the healthcare providers are wonderful at helping you get through it.  I also have a blog, Heatherdevlin.blogspot.com. We detailed each day of treatment as it was happening. 

                                                                              I wish you all the best. Try to be positive and strong!!!

                                                                              • April 19, 2014 at 1:29 pm
                                                                              hdevlin
                                                                              Participant

                                                                                Hi! I went through IL-2 treatment about 2 years ago. My story is posted in the patients stories section of this website, it details my treatment and my recovery afterwards.  I will say it was not the most pleasant experience but the healthcare providers are wonderful at helping you get through it.  I also have a blog, Heatherdevlin.blogspot.com. We detailed each day of treatment as it was happening. 

                                                                                I wish you all the best. Try to be positive and strong!!!

                                                                                • April 19, 2014 at 3:22 pm
                                                                                Bubbles
                                                                                Participant

                                                                                  I've never done IL2 , so no words of wisdom to offer…just warm, hopedul wishes for you. I know many researchers are very positive about this sequence. Yours, c

                                                                                  • April 19, 2014 at 3:22 pm
                                                                                  Bubbles
                                                                                  Participant

                                                                                    I've never done IL2 , so no words of wisdom to offer…just warm, hopedul wishes for you. I know many researchers are very positive about this sequence. Yours, c

                                                                                    • April 19, 2014 at 3:22 pm
                                                                                    Bubbles
                                                                                    Participant

                                                                                      I've never done IL2 , so no words of wisdom to offer…just warm, hopedul wishes for you. I know many researchers are very positive about this sequence. Yours, c

                                                                                      • April 21, 2014 at 8:59 am
                                                                                      Kim K
                                                                                      Participant

                                                                                        Search my past posts RE IL-2.  I was treated in May – June 2010.  I give a graphic detail of what to expect and things to make the experience a little more tolerable.

                                                                                        I am NED since July 2010 and now have a durable remission thanks to IL-2.  Tough but very doable and recovery is very quick.  You will also have the smoothest skin several weeks later after you are finished peeling.  Mainly I was tired, had no appetite.  The V & D was the pits, mostly the D.  I have some hints on how to prepare and things to bring to help alleviate ceartain "issues".

                                                                                        Best of luck, can't hurt and may help with the other immunotherapy effectiveness.

                                                                                        • April 21, 2014 at 8:59 am
                                                                                        Kim K
                                                                                        Participant

                                                                                          Search my past posts RE IL-2.  I was treated in May – June 2010.  I give a graphic detail of what to expect and things to make the experience a little more tolerable.

                                                                                          I am NED since July 2010 and now have a durable remission thanks to IL-2.  Tough but very doable and recovery is very quick.  You will also have the smoothest skin several weeks later after you are finished peeling.  Mainly I was tired, had no appetite.  The V & D was the pits, mostly the D.  I have some hints on how to prepare and things to bring to help alleviate ceartain "issues".

                                                                                          Best of luck, can't hurt and may help with the other immunotherapy effectiveness.

                                                                                          • April 21, 2014 at 8:59 am
                                                                                          Kim K
                                                                                          Participant

                                                                                            Search my past posts RE IL-2.  I was treated in May – June 2010.  I give a graphic detail of what to expect and things to make the experience a little more tolerable.

                                                                                            I am NED since July 2010 and now have a durable remission thanks to IL-2.  Tough but very doable and recovery is very quick.  You will also have the smoothest skin several weeks later after you are finished peeling.  Mainly I was tired, had no appetite.  The V & D was the pits, mostly the D.  I have some hints on how to prepare and things to bring to help alleviate ceartain "issues".

                                                                                            Best of luck, can't hurt and may help with the other immunotherapy effectiveness.

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