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Question about IPI

Forums General Melanoma Community Question about IPI

  • Post
    jtheisen29
    Participant

      Hi all!

      Hi all!

      I am new to the board but find it to be a great asset and so many people who are supportive. I myself do not have melanoma but my twin sister was diagnosed with stage 3b Sept of 09 while 5months pregnant. Fast forward a year and she has a beautiful healthy baby boy (and 6 year old) and currently N.E.D with 51 more shots of interferon left. I am confused by the IPI trial and have gone onto clinicaltrials.org and read the trial descriptions but honestly it is like a different lanuage to me:) I see many posting who are stage 3 considering the trial. My question is what are the qualifications for a stage 3 to partake in the trial. My sisters melanoma was surgically resected, and was only offered interferon or watch and wait. Right now there is no evidence of diesease and we are praying that it continues. After everything that I have read about interferon I am interested if there is anything else that she could enroll in to raise her chance of no recurrance. Her tumor thickness was 3mm and ulcerated with microscopic involvment in 1 node. So I don't know if she would be unable to to do any other trials because there is no measurable diease. Any info that could be shared to help me understand this medical mumbo jumbo would be great!

       

      Thanks,

      Jessica Theisen http://www.caringbridge.org/visit/saramcevilly1

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    • Replies
        Tim–MRF
        Guest

          My understanding about ipi is that it is available through some clinical trials and also through a compassionate use program.  The compassionate use program is only for Stage IV patients who have failed another systemic treatment.  So, unless your sister goes into a trial she would not be eligible for ipi.

          One trial that is recruiting for Stage III compares ipi with placebo.  This is because the standard of care for early Stage III disease is observation with no further treatment.   Some people choose to do interferon, but the data are such that this is a very personal decision and not necessarily driven by overwhelming medical evidence.

          Another ipi trial is only for Stage III with tumors that are unresectable.  Again, that is not the case with your sister.

          Other trials are available for Stage III patients, including a vaccine trial vs. placebo.  I think a couple of people on this board are in that trial.  Here is the link: 

          http://www.clinicaltrials.gov/ct2/show/NCT00796445?term=mage+a+3+melanoma&rank=6

          You ask for help in understanding some of the terms, Staging is based on several factors, including the thickness of the tumor, if it is ulcerated or not, if nodes are involved–and how many–and if the tumor has spread to other parts of the body.  Based on what you have put here it sounds like your sister was staged IIIb.  Does that sound right?

          Some Stage III trials are for "high-risk" Stage III.  This generally means people with tumors that are 4mm or more in thickness or who have multiple nodes involved.  I am not a doctor, but don't believe that your sister would be in that category.  Might be worth asking her doctor.

          Hope this helps.

          Tim–MRF

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            jtheisen29
            Participant

              Tim thanks so much for taking the time to explain:) Yes she is a stage 3b but I had no idea what was considered high risk or not, so thanks for the info. We will look into it!

               

              Thanks,

              Jessica Theisen

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              jtheisen29
              Participant

                Tim thanks so much for taking the time to explain:) Yes she is a stage 3b but I had no idea what was considered high risk or not, so thanks for the info. We will look into it!

                 

                Thanks,

                Jessica Theisen

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                Marshipops
                Participant

                  Hi, just jumping in to ask another question about ipi, I'm sure I read on the clinical trials site that the expanded use trial had been rolled out in more countries than the USA, today when I look it's only in the USA.  Do you know if it is available elsewhere?  Specifically Europe?

                  And if you don't mind me asking a staging question too, as I'm confused about my own status.  I know I'm stage 3 but what?  I had an unulcerated primary, 1.2 mm 14 years ago.  I had a local recurrence 10 years later, don't know about the size or whether it was ulcerated but it felt like a coffee bean.  I then went on to develop one macrometastastic node.. and that's the part that throws me, since macrometastatic nodes are only mentioned in the 3C staging.  Any ideas?

                  Marsha x

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                  Marshipops
                  Participant

                    Hi, just jumping in to ask another question about ipi, I'm sure I read on the clinical trials site that the expanded use trial had been rolled out in more countries than the USA, today when I look it's only in the USA.  Do you know if it is available elsewhere?  Specifically Europe?

                    And if you don't mind me asking a staging question too, as I'm confused about my own status.  I know I'm stage 3 but what?  I had an unulcerated primary, 1.2 mm 14 years ago.  I had a local recurrence 10 years later, don't know about the size or whether it was ulcerated but it felt like a coffee bean.  I then went on to develop one macrometastastic node.. and that's the part that throws me, since macrometastatic nodes are only mentioned in the 3C staging.  Any ideas?

                    Marsha x

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                  Tim–MRF
                  Guest

                    My understanding about ipi is that it is available through some clinical trials and also through a compassionate use program.  The compassionate use program is only for Stage IV patients who have failed another systemic treatment.  So, unless your sister goes into a trial she would not be eligible for ipi.

                    One trial that is recruiting for Stage III compares ipi with placebo.  This is because the standard of care for early Stage III disease is observation with no further treatment.   Some people choose to do interferon, but the data are such that this is a very personal decision and not necessarily driven by overwhelming medical evidence.

                    Another ipi trial is only for Stage III with tumors that are unresectable.  Again, that is not the case with your sister.

                    Other trials are available for Stage III patients, including a vaccine trial vs. placebo.  I think a couple of people on this board are in that trial.  Here is the link: 

                    http://www.clinicaltrials.gov/ct2/show/NCT00796445?term=mage+a+3+melanoma&rank=6

                    You ask for help in understanding some of the terms, Staging is based on several factors, including the thickness of the tumor, if it is ulcerated or not, if nodes are involved–and how many–and if the tumor has spread to other parts of the body.  Based on what you have put here it sounds like your sister was staged IIIb.  Does that sound right?

                    Some Stage III trials are for "high-risk" Stage III.  This generally means people with tumors that are 4mm or more in thickness or who have multiple nodes involved.  I am not a doctor, but don't believe that your sister would be in that category.  Might be worth asking her doctor.

                    Hope this helps.

                    Tim–MRF

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                    Phil S
                    Participant

                      I also think that some of the new IPI trials are offering the treatment to Stage lll, who have had surgery recently. In other words, they are investigating if IPI given shortly after the initial surgery, can improve the survival rate of these patients.  If I am not misunderstanding some of these studies, your sister wouldn't qualify because her surgery was a year ago.  My husband is also Stage lll and is in the midst of interferon.  We hope and pray its building his immune system and eating those cancer cells.  Stay positive and stay strong for your sister.  I am sure she appreciates all your support with having little ones and taking interferon, family really helps!!

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                      Phil S
                      Participant

                        I also think that some of the new IPI trials are offering the treatment to Stage lll, who have had surgery recently. In other words, they are investigating if IPI given shortly after the initial surgery, can improve the survival rate of these patients.  If I am not misunderstanding some of these studies, your sister wouldn't qualify because her surgery was a year ago.  My husband is also Stage lll and is in the midst of interferon.  We hope and pray its building his immune system and eating those cancer cells.  Stay positive and stay strong for your sister.  I am sure she appreciates all your support with having little ones and taking interferon, family really helps!!

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