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Dr. Recommends IL-2
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Dr. Recommends IL-2

› Forums › General Melanoma Community › Dr. Recommends IL-2

  • Post
    • September 17, 2010 at 6:45 pm
    paleskinisin
    Participant

      I have been battling this beast for 4 years.  Initial year, 2006, I had mel on back and 3 positive sentinal nodes.  2008 one met to lung – met removed via surgery and 1 year of leukine.  This year kidney removed with mel tumor.  September CT scan shows 3 tumors on lung – all less than 8mm.  My dr., Dr. Evan Hersh at the Arizona Cancer Center is recommending high dose IL-2.  I am hoping to get information from those who have gone through this treatment.  Any suggestions/help you can provide would be greatly appreciated.

      Thank you,

      I have been battling this beast for 4 years.  Initial year, 2006, I had mel on back and 3 positive sentinal nodes.  2008 one met to lung – met removed via surgery and 1 year of leukine.  This year kidney removed with mel tumor.  September CT scan shows 3 tumors on lung – all less than 8mm.  My dr., Dr. Evan Hersh at the Arizona Cancer Center is recommending high dose IL-2.  I am hoping to get information from those who have gone through this treatment.  Any suggestions/help you can provide would be greatly appreciated.

      Thank you,

      Tina

    Viewing 15 reply threads
    • Replies
        • September 17, 2010 at 7:26 pm
        bill58
        Participant

          Tina,

          You should search through the other messages on the bulletin board to see the treatments that others are going through.  There are quite a few out there besides IL2.

          They need to test your tumor to see if it is BRAF positive.  if so, there are trials with positive results for this condition.

          There is a vaccine out of NIH in Bethesda if you are HLA-2 Positive.

          There are other things that they test for to see if you qualify for various clinical trials, but I am not familiar with them all.

          There is also a drug that is in the process of being approved by the FDA called Ipilimumab or Ippi that you can get on compassionate use.

          Also check out http://clinicaltrials.gov/ for various clinical trials in your area for Melanoma.

          Good luck.  there are a lot of options out there and based on postings on this board, if one does not work, switch to another one.

          I am BRAF positive, HLA-2 negative and am looking to start the BRAF trial once the paperwork goes through.  If that does not work, I will have to pursue other options as well.

          Bill

          • September 17, 2010 at 7:26 pm
          bill58
          Participant

            Tina,

            You should search through the other messages on the bulletin board to see the treatments that others are going through.  There are quite a few out there besides IL2.

            They need to test your tumor to see if it is BRAF positive.  if so, there are trials with positive results for this condition.

            There is a vaccine out of NIH in Bethesda if you are HLA-2 Positive.

            There are other things that they test for to see if you qualify for various clinical trials, but I am not familiar with them all.

            There is also a drug that is in the process of being approved by the FDA called Ipilimumab or Ippi that you can get on compassionate use.

            Also check out http://clinicaltrials.gov/ for various clinical trials in your area for Melanoma.

            Good luck.  there are a lot of options out there and based on postings on this board, if one does not work, switch to another one.

            I am BRAF positive, HLA-2 negative and am looking to start the BRAF trial once the paperwork goes through.  If that does not work, I will have to pursue other options as well.

            Bill

            • September 17, 2010 at 8:24 pm
            jim Breitfeller
            Participant

              You want more than just the management of Melanoma, you want cutting edge therapy to extend your survival.

               

              Clinical Focus: 
              "Dr. Hersh currently focuses on the management of patients with all stages of malignant melanoma and renal cell carcinoma. In melanoma, Dr. Hersh is part of the multidisciplinary melanoma team which consists of three medical oncologists, one dermatologist, one melanoma surgeon, and one radiotherapist. The group has a series of treatment protocols for all stages of melanoma. In kidney cancer, Dr. Hersh is part of the urological cancer team and sees all of the patients with metastatic kidney cancer. The main focus of the clinical work is applying optimal therapy for patients with metastatic disease and to investigate new treatments with clinical protocols."
               
              IL-2 is not New to Melanoma Therapy. I would seek a second opinion. There is more cutting edge therapy out there.
               
              • September 17, 2010 at 8:24 pm
              jim Breitfeller
              Participant

                You want more than just the management of Melanoma, you want cutting edge therapy to extend your survival.

                 

                Clinical Focus: 
                "Dr. Hersh currently focuses on the management of patients with all stages of malignant melanoma and renal cell carcinoma. In melanoma, Dr. Hersh is part of the multidisciplinary melanoma team which consists of three medical oncologists, one dermatologist, one melanoma surgeon, and one radiotherapist. The group has a series of treatment protocols for all stages of melanoma. In kidney cancer, Dr. Hersh is part of the urological cancer team and sees all of the patients with metastatic kidney cancer. The main focus of the clinical work is applying optimal therapy for patients with metastatic disease and to investigate new treatments with clinical protocols."
                 
                IL-2 is not New to Melanoma Therapy. I would seek a second opinion. There is more cutting edge therapy out there.
                 
                • September 19, 2010 at 12:24 am
                paleskinisin
                Participant

                  Thanks for your replies.

                  Bill – good luck with your treatment.  I wish you all the best.

                  I should have mentioned that my tumor was sent for testing for the BRAF.  I haven't gotten the results back yet.  It was sent in 6 weeks ago, so hopefully we'll know soon.  My doctor did recommend other treatment options and I'll look into the clinical trials.  At this point, his #1 recommendation is IL-2 as his history with this treatment has shown success with patients with lung mets, like me.  He wants me to have ipi, but I don't qualify as I haven't failed a chemo treatment.  Over the past 4 years, my tumors have all been removed and I only had low dose interfeon and leukine. 

                  Thanks, I'll keep gathering information.

                    • September 19, 2010 at 7:32 pm
                    Jim in Denver
                    Participant

                      Hi Tina,

                      You DO need to keep gathering information, and not just from this board (even though prople here are a great source of information).  For your Doc to tell you that the only way to get Ipi is to have failed another treatment is WRONG!!! That may be all HE can do, but it is not all that can be done if you are willing to travel for treatment.  I was told the same thing, and I am now getting treatment at MD Anderson in Houston with Ipi and Temodar.  There are other trails at other locations involving Ipi, so please do your homework!  Your Doc is either not telling you all he knows, or does not know what else is out there that might work for you.  Be your own advocate and don't settle for what this Doc knows – or thinks he knows. 

                      Also, a 6 week period for testing is completely unacceptable!  I had my results in less than a week on BRAF.  If you do test positive for BRAF, look at the GSK Trial, not just the Roche Trail.  The Roche Trail is the larger of the two, so therefore available in more places, but it a Phase III trial that is randomized.  Hopefully you understand what a randomized trail can mean for you if you are, in fact, eligible.  Please do more research, and best wishes to you!

                      Jim

                      • September 19, 2010 at 8:40 pm
                      paleskinisin
                      Participant

                        Thanks Jim in Denver for your response.  I definately conducting my own research on this site as well as elsewhere and seeking second opinions. I posted on this site about IL-2 to get information from those who have gone through it as well as just information in general.  I appreciate all the feedback that I have received so far. 

                        I looked into the trials at MD Anderson in Houston and they have 2 protocols.  One you have to have failed another treatment to qualify and the other your tumor must be at least 1 cm.  My tumors are all under this size.  I'll still discuss this with my doc, but it seems that at this point I am not eligible for either at this location.  I'll research and see if there are any others that I may qualify for.  

                        I'm familiar with both the GSK trial and the Roche. Thanks for the information and the encouragement!  I wish you success with your current treatment.

                        Tina

                        • September 19, 2010 at 10:27 pm
                        Jim in Denver
                        Participant

                          Not sure if this posted, so I am doing it again.

                          Plese look at this, Tina:

                          http://clinicaltrials.gov/ct2/show/NCT01119508

                          Best Wishes,

                          Jim

                           

                           

                          • September 20, 2010 at 5:02 am
                          paleskinisin
                          Participant

                            Thanks Jim.  This is the trial I found on the website for MD Anderson – Houston.  The criteria for this trial is tumors must be at least 1 cm.  Mine are all under 1 cm.  According to this criteria, I don't qualify.  I am going to ask my doc about it, but I don't think I can get on this one.

                            • September 20, 2010 at 7:43 pm
                            bill58
                            Participant

                              There are other trials out there for BRAF positive mutations out of Texas:

                              http://www.clinicaltrials.gov/ct2/results?term=braf&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=NA%3AUS%3ATX&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

                              This is one site you can visit to see what other treatments are out there that your Oncologist might not be involved with and may not be aware of.

                              Good Luck.

                              Bill

                              • September 20, 2010 at 7:43 pm
                              bill58
                              Participant

                                There are other trials out there for BRAF positive mutations out of Texas:

                                http://www.clinicaltrials.gov/ct2/results?term=braf&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=NA%3AUS%3ATX&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

                                This is one site you can visit to see what other treatments are out there that your Oncologist might not be involved with and may not be aware of.

                                Good Luck.

                                Bill

                                • September 20, 2010 at 5:02 am
                                paleskinisin
                                Participant

                                  Thanks Jim.  This is the trial I found on the website for MD Anderson – Houston.  The criteria for this trial is tumors must be at least 1 cm.  Mine are all under 1 cm.  According to this criteria, I don't qualify.  I am going to ask my doc about it, but I don't think I can get on this one.

                                  • September 19, 2010 at 10:27 pm
                                  Jim in Denver
                                  Participant

                                    Not sure if this posted, so I am doing it again.

                                    Plese look at this, Tina:

                                    http://clinicaltrials.gov/ct2/show/NCT01119508

                                    Best Wishes,

                                    Jim

                                     

                                     

                                    • September 19, 2010 at 8:40 pm
                                    paleskinisin
                                    Participant

                                      Thanks Jim in Denver for your response.  I definately conducting my own research on this site as well as elsewhere and seeking second opinions. I posted on this site about IL-2 to get information from those who have gone through it as well as just information in general.  I appreciate all the feedback that I have received so far. 

                                      I looked into the trials at MD Anderson in Houston and they have 2 protocols.  One you have to have failed another treatment to qualify and the other your tumor must be at least 1 cm.  My tumors are all under this size.  I'll still discuss this with my doc, but it seems that at this point I am not eligible for either at this location.  I'll research and see if there are any others that I may qualify for.  

                                      I'm familiar with both the GSK trial and the Roche. Thanks for the information and the encouragement!  I wish you success with your current treatment.

                                      Tina

                                      • September 20, 2010 at 9:42 pm
                                      ValinMtl
                                      Participant

                                        I do agree with Jim…I am living in Canada and even there I waited less than 3 weeks for B-RAF results…….Start putting your foot down!…6 weeks unacceptable.  Also DO make sure that it is not a Phase III randomized option.  Val

                                        • September 20, 2010 at 9:42 pm
                                        ValinMtl
                                        Participant

                                          I do agree with Jim…I am living in Canada and even there I waited less than 3 weeks for B-RAF results…….Start putting your foot down!…6 weeks unacceptable.  Also DO make sure that it is not a Phase III randomized option.  Val

                                          • September 19, 2010 at 7:32 pm
                                          Jim in Denver
                                          Participant

                                            Hi Tina,

                                            You DO need to keep gathering information, and not just from this board (even though prople here are a great source of information).  For your Doc to tell you that the only way to get Ipi is to have failed another treatment is WRONG!!! That may be all HE can do, but it is not all that can be done if you are willing to travel for treatment.  I was told the same thing, and I am now getting treatment at MD Anderson in Houston with Ipi and Temodar.  There are other trails at other locations involving Ipi, so please do your homework!  Your Doc is either not telling you all he knows, or does not know what else is out there that might work for you.  Be your own advocate and don't settle for what this Doc knows – or thinks he knows. 

                                            Also, a 6 week period for testing is completely unacceptable!  I had my results in less than a week on BRAF.  If you do test positive for BRAF, look at the GSK Trial, not just the Roche Trail.  The Roche Trail is the larger of the two, so therefore available in more places, but it a Phase III trial that is randomized.  Hopefully you understand what a randomized trail can mean for you if you are, in fact, eligible.  Please do more research, and best wishes to you!

                                            Jim

                                          • September 19, 2010 at 12:24 am
                                          paleskinisin
                                          Participant

                                            Thanks for your replies.

                                            Bill – good luck with your treatment.  I wish you all the best.

                                            I should have mentioned that my tumor was sent for testing for the BRAF.  I haven't gotten the results back yet.  It was sent in 6 weeks ago, so hopefully we'll know soon.  My doctor did recommend other treatment options and I'll look into the clinical trials.  At this point, his #1 recommendation is IL-2 as his history with this treatment has shown success with patients with lung mets, like me.  He wants me to have ipi, but I don't qualify as I haven't failed a chemo treatment.  Over the past 4 years, my tumors have all been removed and I only had low dose interfeon and leukine. 

                                            Thanks, I'll keep gathering information.

                                            • September 19, 2010 at 9:30 pm
                                            KatyWI
                                            Participant

                                              Tina,

                                              What you asked for is informatoin & viewpoints from people who have gone through IL-2, so that's what I'm going to talk about.  I had IL-2 from December 2009 through May 2010.  I had a partial response and had one remaining subQ excised to be rendered NED.  Unfortunately, I am not one of the lucky ones to have a durable response – I had three new little subQs show up on my 3-month scans.  That being said, IL-2 did put me in a much better place than I started in (I started with some large, very active mets, including some that were not surgically accessible.)  Some people DO respond fabulously to IL-2.  It's just about only thing out there that has the potential for a complete, durable response that you can get without being on a trial.  Many trials will not accept you until you've failed at least one systemic therapy.  But on the other hand, some trials want you to be previously untreated, so you're right to do your homework.

                                              My experience actually being on IL-2…it's a very difficult treatment, but you won't remember all that much of it.  It's tough on your caregiver because s/he does remember all of it.  If you decide to do IL-2, we'll be here with advice for getting through it.

                                              Good luck,

                                              KatyWI

                                              • September 19, 2010 at 9:30 pm
                                              KatyWI
                                              Participant

                                                Tina,

                                                What you asked for is informatoin & viewpoints from people who have gone through IL-2, so that's what I'm going to talk about.  I had IL-2 from December 2009 through May 2010.  I had a partial response and had one remaining subQ excised to be rendered NED.  Unfortunately, I am not one of the lucky ones to have a durable response – I had three new little subQs show up on my 3-month scans.  That being said, IL-2 did put me in a much better place than I started in (I started with some large, very active mets, including some that were not surgically accessible.)  Some people DO respond fabulously to IL-2.  It's just about only thing out there that has the potential for a complete, durable response that you can get without being on a trial.  Many trials will not accept you until you've failed at least one systemic therapy.  But on the other hand, some trials want you to be previously untreated, so you're right to do your homework.

                                                My experience actually being on IL-2…it's a very difficult treatment, but you won't remember all that much of it.  It's tough on your caregiver because s/he does remember all of it.  If you decide to do IL-2, we'll be here with advice for getting through it.

                                                Good luck,

                                                KatyWI

                                                • September 20, 2010 at 4:14 am
                                                LBN
                                                Participant

                                                  I went through the IL2 earlier this year as part of a clinical trial. If you do decide to go this route just remember to keep your thoughts on the end goal of better health. I had 12 doses over 5 days. After each dose I would tell myself I can do one more if it means being well for my my family.  I don't really remember much about those days but I do beleive that was the most effecive portion of the trial.

                                                  • September 20, 2010 at 4:14 am
                                                  LBN
                                                  Participant

                                                    I went through the IL2 earlier this year as part of a clinical trial. If you do decide to go this route just remember to keep your thoughts on the end goal of better health. I had 12 doses over 5 days. After each dose I would tell myself I can do one more if it means being well for my my family.  I don't really remember much about those days but I do beleive that was the most effecive portion of the trial.

                                                    • September 20, 2010 at 5:14 am
                                                    paleskinisin
                                                    Participant

                                                      Thank you KatyWI and LBN.  I was interested in hearing from those who have had this treatment.  I know it is not the newest treatment, but it is a treatment that is still used by many.  Thank you for sharing your experiences and thoughts. 

                                                      I wish you both the best of health and success in your journey's.

                                                      Tina

                                                       

                                                      • September 20, 2010 at 5:14 am
                                                      paleskinisin
                                                      Participant

                                                        Thank you KatyWI and LBN.  I was interested in hearing from those who have had this treatment.  I know it is not the newest treatment, but it is a treatment that is still used by many.  Thank you for sharing your experiences and thoughts. 

                                                        I wish you both the best of health and success in your journey's.

                                                        Tina

                                                         

                                                        • September 21, 2010 at 4:57 pm
                                                        debbieVA
                                                        Participant

                                                          Tina…

                                                          I am a complete responder to IL-2….57 treatments March 2007-Feb 2008.  I would be happy to speak to you via phone or E-mail  …  [email protected]

                                                          If IL-2 is your silver bullet, then it's a home run….

                                                           

                                                          Best to luck to you

                                                           

                                                          Debbie Stage 4 NED

                                                            • September 21, 2010 at 5:45 pm
                                                            paleskinisin
                                                            Participant

                                                              Thanks Debbie!  I am on my way to my Dr.'s visit to discuss treatment.  I have my list of questions from my research and the information I received from those on this site – thanks everyone.

                                                              It is fantastic to hear from a responder of IL-2.  I know the percentage is low for responders, but I know there are folks out there so thanks for posting.  I will email you soon. 

                                                              Thanks so much and good health to all!

                                                              Tina

                                                              • September 21, 2010 at 5:45 pm
                                                              paleskinisin
                                                              Participant

                                                                Thanks Debbie!  I am on my way to my Dr.'s visit to discuss treatment.  I have my list of questions from my research and the information I received from those on this site – thanks everyone.

                                                                It is fantastic to hear from a responder of IL-2.  I know the percentage is low for responders, but I know there are folks out there so thanks for posting.  I will email you soon. 

                                                                Thanks so much and good health to all!

                                                                Tina

                                                              • September 21, 2010 at 4:57 pm
                                                              debbieVA
                                                              Participant

                                                                Tina…

                                                                I am a complete responder to IL-2….57 treatments March 2007-Feb 2008.  I would be happy to speak to you via phone or E-mail  …  [email protected]

                                                                If IL-2 is your silver bullet, then it's a home run….

                                                                 

                                                                Best to luck to you

                                                                 

                                                                Debbie Stage 4 NED

                                                                • October 4, 2010 at 2:58 am
                                                                Pekoe
                                                                Participant

                                                                  Tina,

                                                                   

                                                                  I was just wondering how you are doing, if you decided to go ahead with the IL-2, and what your experience was with Cancer Centers of America?  Were you pleased with your consultation there?  I'm looking forward to hearing from you,

                                                                   

                                                                  Vera

                                                                   

                                                                  • October 4, 2010 at 2:58 am
                                                                  Pekoe
                                                                  Participant

                                                                    Tina,

                                                                     

                                                                    I was just wondering how you are doing, if you decided to go ahead with the IL-2, and what your experience was with Cancer Centers of America?  Were you pleased with your consultation there?  I'm looking forward to hearing from you,

                                                                     

                                                                    Vera

                                                                     

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