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il-2 treatment facilities

Forums General Melanoma Community il-2 treatment facilities

  • Post
    rbruce
    Participant

      So, looks like I may be going the il-2 route as my stage 4 Nras positive mutation doesn't have many options, and il-2 is the only thing offering a proven continued durable response.  Although the percentage isn't high, at least there is the potential of a long term response. Anyways, I am hoping that some of you can tell me about the facilities and il2 teams and the care provided, especially any in California.  I had decided on a chemo trial to start thursday, but I'm having major second thoughts.  This will be my first treatment.

      So, looks like I may be going the il-2 route as my stage 4 Nras positive mutation doesn't have many options, and il-2 is the only thing offering a proven continued durable response.  Although the percentage isn't high, at least there is the potential of a long term response. Anyways, I am hoping that some of you can tell me about the facilities and il2 teams and the care provided, especially any in California.  I had decided on a chemo trial to start thursday, but I'm having major second thoughts.  This will be my first treatment.  pet/ct 2 weeks ago showed a number of small lung tumors, largest grew from 8 mm to 1.1cm.  I like what I've read about Til therapy, but need at least a 2cm tumor to qualify.  Also, newly found bone met in a rib and lymph node under my armpit lighting up. Any comments/experiences would be most welcome.  Thank you.  Robert 

    Viewing 17 reply threads
    • Replies
        PeterO
        Participant

          The Proleukin web site will show you where treatment centers are located:  http://www.proleukin.com/. All the best.

          PeterO
          Participant

            The Proleukin web site will show you where treatment centers are located:  http://www.proleukin.com/. All the best.

            Vermont_Donna
            Participant

              Dear Robert, 

              I cant advise you about Il 2 or treatment centers that do it, but sorry that your melanoma is growing larger and popping up in new places. I am sure others will chime in soon.

              Best wishes,

              Vermont_Donna, stage 3a, NED

              Vermont_Donna
              Participant

                Dear Robert, 

                I cant advise you about Il 2 or treatment centers that do it, but sorry that your melanoma is growing larger and popping up in new places. I am sure others will chime in soon.

                Best wishes,

                Vermont_Donna, stage 3a, NED

                Jerry from Cape Cod
                Participant

                  Robert,

                  I can't help you with the center, but one of frequent posters Jane from Maine has compliled a IL2 tip sheet available on her website at http://www.operationsunshield.org/

                  Jerry from Cape Cod

                  Jerry from Cape Cod
                  Participant

                    Robert,

                    I can't help you with the center, but one of frequent posters Jane from Maine has compliled a IL2 tip sheet available on her website at http://www.operationsunshield.org/

                    Jerry from Cape Cod

                    kylez
                    Participant

                      Kaiser has one of the highest volume IL-2 centers in the country in Riverside. Kaiser patients getting IL-2 are all sent there (so you probably wouldn' be asking if your were insured by them). I was treated by them with IL2 last year and recommend them — but I'm almost certain it's only available to Kaiser patients.

                      Lacking any other referrals/recommendations, you might look for it being given at an NCI-designated cancer center — http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html. You could cross-walk that list against the Prolekin treatment centers list.

                      Also if everything else is equal, one close by makes visits during during treatment and the trip home after each cycle easier, e.g., UC Davis if you're in Sacramento.

                      kylez
                      Participant

                        Kaiser has one of the highest volume IL-2 centers in the country in Riverside. Kaiser patients getting IL-2 are all sent there (so you probably wouldn' be asking if your were insured by them). I was treated by them with IL2 last year and recommend them — but I'm almost certain it's only available to Kaiser patients.

                        Lacking any other referrals/recommendations, you might look for it being given at an NCI-designated cancer center — http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html. You could cross-walk that list against the Prolekin treatment centers list.

                        Also if everything else is equal, one close by makes visits during during treatment and the trip home after each cycle easier, e.g., UC Davis if you're in Sacramento.

                        shellebrownies
                        Participant

                          Unfortunately, I cannot tell you about California, but I do know that Mass General Hospital in Boston where my husband goes does do IL-2.

                          Michelle, wife of Don, Stage IV

                          shellebrownies
                          Participant

                            Unfortunately, I cannot tell you about California, but I do know that Mass General Hospital in Boston where my husband goes does do IL-2.

                            Michelle, wife of Don, Stage IV

                            rbruce
                            Participant

                              Thank you to all of you that responded to my post.  I am still debating treatment options but determined to make my decision this week.  This is my list….

                              1. Biochemotherapy at California Pacific Medical Center in SF.

                              2. IPI at same or UCSF.

                              3. IL-2 at UCSF

                              4. Clinical trial of carboplatin, paclitaxel and axitinib at UCSF

                              Because I presented with spot on my back, then directly to lung and bone via blood, the Biochemotherapy option seems to make a lot of sense according to Doc at CPMC.  It seems that those whose skin melanoma goes through lymph nodes first have some success with immunotherapy like IL-2 while cases like mine have done pretty well with Biochemotherapy.  Because this will be my first treatment I would love to hit a home run but definitely don't want to exclude myself from other trials as second line. 

                              I'm anxious to get started destroying this disease but at the same time want to make sure I've done my due diligence so I'm not looking backwards in a week or two wondering …should I have done ??????  I want to move forward with every bit of confidence and optimism in order to support my immune system. 

                              rbruce
                              Participant

                                Thank you to all of you that responded to my post.  I am still debating treatment options but determined to make my decision this week.  This is my list….

                                1. Biochemotherapy at California Pacific Medical Center in SF.

                                2. IPI at same or UCSF.

                                3. IL-2 at UCSF

                                4. Clinical trial of carboplatin, paclitaxel and axitinib at UCSF

                                Because I presented with spot on my back, then directly to lung and bone via blood, the Biochemotherapy option seems to make a lot of sense according to Doc at CPMC.  It seems that those whose skin melanoma goes through lymph nodes first have some success with immunotherapy like IL-2 while cases like mine have done pretty well with Biochemotherapy.  Because this will be my first treatment I would love to hit a home run but definitely don't want to exclude myself from other trials as second line. 

                                I'm anxious to get started destroying this disease but at the same time want to make sure I've done my due diligence so I'm not looking backwards in a week or two wondering …should I have done ??????  I want to move forward with every bit of confidence and optimism in order to support my immune system. 

                                debandmike
                                Participant

                                  Not close to you but my husband is receiving his treatments of IL-2 from Dr. Lawrence Flanherty at Karmanos Caner Center in Detroit MI. Fantastic Doctor and facilily.

                                  debandmike
                                  Participant

                                    Not close to you but my husband is receiving his treatments of IL-2 from Dr. Lawrence Flanherty at Karmanos Caner Center in Detroit MI. Fantastic Doctor and facilily.

                                    TIL enthusiast
                                    Participant

                                      For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.

                                      TIL enthusiast
                                      Participant

                                        For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.

                                        TIL enthusiast
                                        Participant
                                          For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.
                                            kylez
                                            Participant

                                              that's interesting. i'll look at what MDA says about TIL.

                                              just read yesterday that a company's interested in bringing TIL into a commercial product "Contego", which I read NCI was trying to get some commercial activity happening on.

                                              Contego

                                              kylez
                                              Participant

                                                that's interesting. i'll look at what MDA says about TIL.

                                                just read yesterday that a company's interested in bringing TIL into a commercial product "Contego", which I read NCI was trying to get some commercial activity happening on.

                                                Contego

                                                kylez
                                                Participant

                                                  oh yeah, the Contego thing has MD Anderson and Moffitt (and other involved) too, "Contego is based on the TIL adoptive cell therapy being used at the National Cancer Institute, MD Anderson Cancer Center and the H. Lee Moffitt Cancer & Research Institute."

                                                  Sounds like NCI found a strong group to possibly commercialize TIL.

                                                  kylez
                                                  Participant

                                                    oh yeah, the Contego thing has MD Anderson and Moffitt (and other involved) too, "Contego is based on the TIL adoptive cell therapy being used at the National Cancer Institute, MD Anderson Cancer Center and the H. Lee Moffitt Cancer & Research Institute."

                                                    Sounds like NCI found a strong group to possibly commercialize TIL.

                                                  TIL enthusiast
                                                  Participant
                                                    For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.
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