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6 Year Survivor on ipilimumab /Yervoy

Forums General Melanoma Community 6 Year Survivor on ipilimumab /Yervoy

  • Post
    trojansurvivor
    Participant

      I am an 8 year Melanoma stage 4 survivor, and have been in the drug trial for Yervoy for the last 6 years, and have had clear scans for 3 years.  I originally was diagnosed with stage 4 in late 2002, with tumors in my lung, spleen, liver and spine.  I had bio-chemo therapy,(dacarbazine, cisplatin, IL-2, and interferon).and went into remission for about a year, including a monthly maintenance program of low dose IL-2. After about a year, I started to have soft tissue tumors appear in my groin and upper thigh area, and had about 5 surgeries for tumor removal.

      I am an 8 year Melanoma stage 4 survivor, and have been in the drug trial for Yervoy for the last 6 years, and have had clear scans for 3 years.  I originally was diagnosed with stage 4 in late 2002, with tumors in my lung, spleen, liver and spine.  I had bio-chemo therapy,(dacarbazine, cisplatin, IL-2, and interferon).and went into remission for about a year, including a monthly maintenance program of low dose IL-2. After about a year, I started to have soft tissue tumors appear in my groin and upper thigh area, and had about 5 surgeries for tumor removal.  After 6 more small soft tissue tumors appeared, I began the ipilimumab trial. My only side effect was a skin rash on my stomach and back of my legs that disappeared in a couple of months. My tumors began to decrease in size dramatically, with most disappearing within a year.I had a second infusion treatment 2 years after the first treatment.  One tumor, however, began to grow larger and about 3 years ago was surgically removed.  For the last 6 years, no new tumors have appeared, and I have had clear scans for the last 3 years.  

      This drug was a god sned for me and saved my life !!!

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    • Replies
        Vermont_Donna
        Participant

          Hi,

          So glad to hear your good news. I have had a good response to Ipi too, all of my leg tumors (50 to 60) are gone after 4 infusions of Ipi this last December to February.

          I am curious….what was your dose of Ipi? I got 3mg/kg. Some of the older trials were 10mg/kg. How many doses did you get the first time? and then the second time how many doses? I am curious as to doses and frequency for treatment. Now that it is FDA approved I dont know if the trial I am in will continue. I was supposed to get 4 more doses for a second round starting in mid-May.

          I wish you continued NED status!!

          Vermont_Donna, stage 3a

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            killmel
            Participant

              Hi Donna,

               

              I spoke to BMS and it is my understanding that Everyone on the compassionate use IPI clinical trials, unless you are scheduled within the next 30 days for an infusion then BMS will not be giving IPI free out any longer.

              Those schedule for an infusion within the next  30 day will get IPI free from BMS.

              I was also told patients should contact their insurance company to determine if IPI will be covered under their insurance benefits.

              Hope this helps

              Dee

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              killmel
              Participant

                Hi Donna,

                 

                I spoke to BMS and it is my understanding that Everyone on the compassionate use IPI clinical trials, unless you are scheduled within the next 30 days for an infusion then BMS will not be giving IPI free out any longer.

                Those schedule for an infusion within the next  30 day will get IPI free from BMS.

                I was also told patients should contact their insurance company to determine if IPI will be covered under their insurance benefits.

                Hope this helps

                Dee

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                trojansurvivor
                Participant

                  I do not know the dosage as it was a blind trial, but I know that I had the drug as I ddi develop a rash on my stomach and back of my legs which was one of the listed side effects. I received 4 IV doses every 3 weeks for both my initial treatment in December 2204 and then 2 years later.

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                  trojansurvivor
                  Participant

                    I do not know the dosage as it was a blind trial, but I know that I had the drug as I ddi develop a rash on my stomach and back of my legs which was one of the listed side effects. I received 4 IV doses every 3 weeks for both my initial treatment in December 2204 and then 2 years later.

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                  Vermont_Donna
                  Participant

                    Hi,

                    So glad to hear your good news. I have had a good response to Ipi too, all of my leg tumors (50 to 60) are gone after 4 infusions of Ipi this last December to February.

                    I am curious….what was your dose of Ipi? I got 3mg/kg. Some of the older trials were 10mg/kg. How many doses did you get the first time? and then the second time how many doses? I am curious as to doses and frequency for treatment. Now that it is FDA approved I dont know if the trial I am in will continue. I was supposed to get 4 more doses for a second round starting in mid-May.

                    I wish you continued NED status!!

                    Vermont_Donna, stage 3a

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                    Sharyn
                    Participant

                      Thank you so much for such an inspiring story! I'm on ipi (3mg/kg) and have had fantastic results. All my sub-qs are gone, and my one lung met is shrinking. However, I did develop a couple of new brain mets, one of which required a craniotomy, but they could have been seedlings when I started ipi and grew. But the brain is clear now, and I'm hoping to resume ipi within the next few weeks. I hope I have the same response as you, and can write a similar post in 2020! :>)

                      Hugs

                      Sharyn, Stage IV

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                      Sharyn
                      Participant

                        Thank you so much for such an inspiring story! I'm on ipi (3mg/kg) and have had fantastic results. All my sub-qs are gone, and my one lung met is shrinking. However, I did develop a couple of new brain mets, one of which required a craniotomy, but they could have been seedlings when I started ipi and grew. But the brain is clear now, and I'm hoping to resume ipi within the next few weeks. I hope I have the same response as you, and can write a similar post in 2020! :>)

                        Hugs

                        Sharyn, Stage IV

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                          trojansurvivor
                          Participant

                            My prayers will be with you. Good luck and keep the faith

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                            trojansurvivor
                            Participant

                              My prayers will be with you. Good luck and keep the faith

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                              killmel
                              Participant

                                Sharyn,

                                 

                                So happy you are doing well.

                                I am thinking about doing IPI and I have sub-qs on my thing.

                                What size was the "largest" subq that IPI got rid of? How many did you have & sizes?

                                Hoping your next infusion put you in an NED status.

                                Dee

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                                killmel
                                Participant

                                  Sharyn,

                                   

                                  So happy you are doing well.

                                  I am thinking about doing IPI and I have sub-qs on my thing.

                                  What size was the "largest" subq that IPI got rid of? How many did you have & sizes?

                                  Hoping your next infusion put you in an NED status.

                                  Dee

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                                Rebecca and Bob
                                Participant

                                  Thanks for posting, it gives a lot of people hope. Do you happen to know if you are HLA-A2? There appears some type of relationship with those who respond to IL-2 or Bio and those who respond to IPI.

                                  Rebecca

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                                  Rebecca and Bob
                                  Participant

                                    Thanks for posting, it gives a lot of people hope. Do you happen to know if you are HLA-A2? There appears some type of relationship with those who respond to IL-2 or Bio and those who respond to IPI.

                                    Rebecca

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                                    chet
                                    Participant

                                      Thanks for this post! It gives me a lot of hope, being that if IL-2 isn't the magic bullet for me, IPI might be it. How do they administer IPI? Is it through transfusion, shot, pill??? I wonder how much it costs to obtain it because I heard it's expensive. 

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                                        trojansurvivor
                                        Participant

                                          It was administered through an  IV through 4 IV infusions every 3 weeks. 

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                                          cfw9186
                                          Participant

                                            I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                            cfw9186
                                            Participant

                                              I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                              cfw9186
                                              Participant

                                                I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                                cfw9186
                                                Participant

                                                  I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                                  cfw9186
                                                  Participant

                                                    I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                                    cfw9186
                                                    Participant

                                                      I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                                      cfw9186
                                                      Participant

                                                        I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                                        cfw9186
                                                        Participant

                                                          I just began IPI a week ago, got my first infussion, I love reading these positive results.  To answer the cost of the treatment 30,000 x 4 = 120,000.  I know shocking.

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                                                          trojansurvivor
                                                          Participant

                                                            It was administered through an  IV through 4 IV infusions every 3 weeks. 

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                                                          chet
                                                          Participant

                                                            Thanks for this post! It gives me a lot of hope, being that if IL-2 isn't the magic bullet for me, IPI might be it. How do they administer IPI? Is it through transfusion, shot, pill??? I wonder how much it costs to obtain it because I heard it's expensive. 

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                                                            JerryfromFauq
                                                            Participant

                                                              Glad to see your post and hear your great results. 

                                                              I was pumping gas for my car a few weeks back and heard a politician on a talk show really knocking either the government or insurance companies supporting Ipi because it costs so much and "only helps extend live for only 3 1/2 months"  `

                                                                 I wish the write ups  on it would also mention the great extension of life that many here have experienced as well as the quality of life that has been obtained.    This is a start, not the endpoint!

                                                                 I also realize that the actual trestment cost is more than just the cost of the Ipi alone.  (The cost of IL-2 is not cheap either.)

                                                                 Have you been  on any maintaince treatments?  How many treatments with the Ipi have you received? And what is foreseen for future follow on?

                                                               

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                                                              JerryfromFauq
                                                              Participant

                                                                Glad to see your post and hear your great results. 

                                                                I was pumping gas for my car a few weeks back and heard a politician on a talk show really knocking either the government or insurance companies supporting Ipi because it costs so much and "only helps extend live for only 3 1/2 months"  `

                                                                   I wish the write ups  on it would also mention the great extension of life that many here have experienced as well as the quality of life that has been obtained.    This is a start, not the endpoint!

                                                                   I also realize that the actual trestment cost is more than just the cost of the Ipi alone.  (The cost of IL-2 is not cheap either.)

                                                                   Have you been  on any maintaince treatments?  How many treatments with the Ipi have you received? And what is foreseen for future follow on?

                                                                 

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                                                                  trojansurvivor
                                                                  Participant

                                                                    I had two treatments with ipi.  The first serious of infusions was 6 years ago,  and my second was about 4 years ago.  I just had my twice a year pet scan and my scans are still clear.  I am still in full remission after 3 and a half years.  I will have scans every 6 months, and if there is no recurrence there is no plan to give me more treatment.  If I have a reoccurence, my doctor says that I would be given another round of ipi, and for those that have had a good result on ipi, that retreatment has a very high percentage of success. 

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                                                                    trojansurvivor
                                                                    Participant

                                                                      I had two treatments with ipi.  The first serious of infusions was 6 years ago,  and my second was about 4 years ago.  I just had my twice a year pet scan and my scans are still clear.  I am still in full remission after 3 and a half years.  I will have scans every 6 months, and if there is no recurrence there is no plan to give me more treatment.  If I have a reoccurence, my doctor says that I would be given another round of ipi, and for those that have had a good result on ipi, that retreatment has a very high percentage of success. 

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                                                                    AudreyB
                                                                    Participant

                                                                      My recent PET scan following external beam and internal Brachytherapy radiation and accompanying oral chemotherapy (Temodar) showed that my 4 primary site tumors virtually disappeared, however my melanoma status has now changed to Stage 4 as they also discovered new nodukes in my lungs and uptake in a lymph node. I just started with my first infusion of Yervoy 2 days ago and I am hoping for a miracle response like you seem to have had! Congratulations!!!!!

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                                                                      AudreyB
                                                                      Participant

                                                                        My recent PET scan following external beam and internal Brachytherapy radiation and accompanying oral chemotherapy (Temodar) showed that my 4 primary site tumors virtually disappeared, however my melanoma status has now changed to Stage 4 as they also discovered new nodukes in my lungs and uptake in a lymph node. I just started with my first infusion of Yervoy 2 days ago and I am hoping for a miracle response like you seem to have had! Congratulations!!!!!

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                                                                        AudreyB
                                                                        Participant

                                                                          My recent PET scan following external beam and internal Brachytherapy radiation and accompanying oral chemotherapy (Temodar) showed that my 4 primary site tumors virtually disappeared, however my melanoma status has now changed to Stage 4 as they also discovered new nodukes in my lungs and uptake in a lymph node. I just started with my first infusion of Yervoy 2 days ago and I am hoping for a miracle response like you seem to have had! Congratulations!!!!!

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