6 Year Survivor on ipilimumab /Yervoy

This topic has 35 replies, 9 voices, and was last updated 13 years, 1 month ago by AudreyB.

Post

- March 28, 2011 at 10:17 pm
- Quote
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 !!!

Viewing 12 reply threads

Replies

- - March 28, 2011 at 10:31 pm
  - Quote
  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
  - March 28, 2011 at 10:46 pm
    
    Quote
    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
  - March 28, 2011 at 10:46 pm
    
    Quote
    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
  - March 30, 2011 at 3:41 am
    
    Quote
    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.
  - March 30, 2011 at 3:41 am
    
    Quote
    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.
- - March 28, 2011 at 10:31 pm
  - Quote
  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
- - March 29, 2011 at 10:46 am
  - Quote
  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
  - March 30, 2011 at 3:38 am
    
    Quote
    trojansurvivor
    Participant
    
    My prayers will be with you. Good luck and keep the faith
  - March 30, 2011 at 3:38 am
    
    Quote
    trojansurvivor
    Participant
    
    My prayers will be with you. Good luck and keep the faith
  - March 30, 2011 at 2:31 pm
    
    Quote
    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
  - March 30, 2011 at 2:31 pm
    
    Quote
    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
- - March 29, 2011 at 10:46 am
  - Quote
  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
- - March 29, 2011 at 1:06 pm
  - Quote
  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
  - March 30, 2011 at 3:37 am
    
    Quote
    trojansurvivor
    Participant
    
    I think that I was HLA-A2
  - March 30, 2011 at 3:37 am
    
    Quote
    trojansurvivor
    Participant
    
    I think that I was HLA-A2
- - March 29, 2011 at 1:06 pm
  - Quote
  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
- - March 30, 2011 at 1:53 am
  - Quote
  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.
  - March 30, 2011 at 3:35 am
    
    Quote
    trojansurvivor
    Participant
    
    It was administered through an IV through 4 IV infusions every 3 weeks.
  - May 6, 2011 at 3:14 pm
    
    Quote
    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.
  - May 6, 2011 at 3:14 pm
    
    Quote
    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.
  - May 6, 2011 at 3:14 pm
    
    Quote
    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.
  - May 6, 2011 at 3:14 pm
    
    Quote
    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.
  - May 6, 2011 at 3:15 pm
    
    Quote
    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.
  - May 6, 2011 at 3:15 pm
    
    Quote
    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.
  - May 6, 2011 at 3:15 pm
    
    Quote
    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.
  - May 6, 2011 at 3:15 pm
    
    Quote
    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.
  - March 30, 2011 at 3:35 am
    
    Quote
    trojansurvivor
    Participant
    
    It was administered through an IV through 4 IV infusions every 3 weeks.
- - March 30, 2011 at 1:53 am
  - Quote
  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.
- - July 22, 2011 at 4:03 am
  - Quote
  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?
  - July 22, 2011 at 8:11 am
    
    Quote
    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.
  - July 22, 2011 at 8:11 am
    
    Quote
    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.
- - July 22, 2011 at 4:03 am
  - Quote
  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?
- - October 30, 2011 at 9:01 pm
  - Quote
  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!!!!!
- - October 30, 2011 at 9:01 pm
  - Quote
  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!!!!!
- - October 30, 2011 at 9:01 pm
  - Quote
  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!!!!!