› Forums › General Melanoma Community › Ipilimumab? Anyone familiar?
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ABELL.
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- August 15, 2014 at 7:23 pm
My best friends story:
Stage IV 52 year old woman.
Doctor gave her 6mo-1yr survival.
Had Cyberknife on brain tumors.
Had radiation on Spine.
All treatments done winth-in the last 3 weeks.
Tumors in lung, liver, lymph nodes & some bone.
Since she has brain tumors, there are not a lot of clinical trials out there. Her Kaiser Oncologist is going to refer her to UCSF for a second opinion/evaluation/possible clinical trials.
Ipilimumab will start on 8/26.
Any success with this treatment? What should our expectations be with this drug?
What side effects, if any, have any of you had or having?
Could this lead to NED?
Any insight would be appreciated!
~Amanda
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- August 16, 2014 at 1:35 am
I just finished my 4th and final Yervoy treatment on Wed and so far i have had no side effects, i will have scans in 4 weeks to see if it's working for me or not..Good luck! Stage 3 C
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- August 16, 2014 at 1:35 am
I just finished my 4th and final Yervoy treatment on Wed and so far i have had no side effects, i will have scans in 4 weeks to see if it's working for me or not..Good luck! Stage 3 C
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- August 16, 2014 at 1:35 am
I just finished my 4th and final Yervoy treatment on Wed and so far i have had no side effects, i will have scans in 4 weeks to see if it's working for me or not..Good luck! Stage 3 C
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- August 16, 2014 at 5:16 am
I am stage IV (lungs and chest nodes) female 57 yr old. I had my first infusion 2 weeks ago and so far no side effects. I believe the chances of side effects increase with each infusion but I would love to have this confirmed by other patients on this site. Thanks and good luck for your best friend.
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- August 16, 2014 at 5:16 am
I am stage IV (lungs and chest nodes) female 57 yr old. I had my first infusion 2 weeks ago and so far no side effects. I believe the chances of side effects increase with each infusion but I would love to have this confirmed by other patients on this site. Thanks and good luck for your best friend.
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- August 16, 2014 at 5:16 am
I am stage IV (lungs and chest nodes) female 57 yr old. I had my first infusion 2 weeks ago and so far no side effects. I believe the chances of side effects increase with each infusion but I would love to have this confirmed by other patients on this site. Thanks and good luck for your best friend.
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- August 16, 2014 at 6:07 am
My Mom (78) was diagnosed at stage IV. She has had good results with both ipi/Yervoy and gamma knife radiation thus far. Her treatment with Yervoy started 4 days after gamma knife radiation for 8 brain mets.
She developed colitis early on and only had 2 infusions before taking 2 months off while she was treated for colitis. She again developed colitis a week after the 3rd infusion. We discovered she had 16 brain mets when she was told she had to start steroids again and she would not have her 4th infusion. The brain mets treated were almost exactly 4 months after the 1st treatment and 3 weeks after the last infusion.
She responded almost right away to ipi/Yervoy. We know this because many tumors were on her scalp and neck. They began shrinking and changing in a few days after her first infusion. – She also got colitis, which is a indicator of a response.
The tumors in her body did not respond as fast as the one's on her head. However, they did respond.
Today, her doctor says it looks like she is headed for a long term response and she's beaten the odd's by a "wide wide wide margin". – Good news for a VERY stubborn woman who didn't tell me for months about the "bumps" on her head.
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- August 16, 2014 at 6:07 am
My Mom (78) was diagnosed at stage IV. She has had good results with both ipi/Yervoy and gamma knife radiation thus far. Her treatment with Yervoy started 4 days after gamma knife radiation for 8 brain mets.
She developed colitis early on and only had 2 infusions before taking 2 months off while she was treated for colitis. She again developed colitis a week after the 3rd infusion. We discovered she had 16 brain mets when she was told she had to start steroids again and she would not have her 4th infusion. The brain mets treated were almost exactly 4 months after the 1st treatment and 3 weeks after the last infusion.
She responded almost right away to ipi/Yervoy. We know this because many tumors were on her scalp and neck. They began shrinking and changing in a few days after her first infusion. – She also got colitis, which is a indicator of a response.
The tumors in her body did not respond as fast as the one's on her head. However, they did respond.
Today, her doctor says it looks like she is headed for a long term response and she's beaten the odd's by a "wide wide wide margin". – Good news for a VERY stubborn woman who didn't tell me for months about the "bumps" on her head.
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- August 16, 2014 at 6:07 am
My Mom (78) was diagnosed at stage IV. She has had good results with both ipi/Yervoy and gamma knife radiation thus far. Her treatment with Yervoy started 4 days after gamma knife radiation for 8 brain mets.
She developed colitis early on and only had 2 infusions before taking 2 months off while she was treated for colitis. She again developed colitis a week after the 3rd infusion. We discovered she had 16 brain mets when she was told she had to start steroids again and she would not have her 4th infusion. The brain mets treated were almost exactly 4 months after the 1st treatment and 3 weeks after the last infusion.
She responded almost right away to ipi/Yervoy. We know this because many tumors were on her scalp and neck. They began shrinking and changing in a few days after her first infusion. – She also got colitis, which is a indicator of a response.
The tumors in her body did not respond as fast as the one's on her head. However, they did respond.
Today, her doctor says it looks like she is headed for a long term response and she's beaten the odd's by a "wide wide wide margin". – Good news for a VERY stubborn woman who didn't tell me for months about the "bumps" on her head.
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- August 16, 2014 at 1:13 pm
I am similar age and am stage 4 with liver/lung & lymph node lesions – no brain or bone. I have only been treated with iPi and am 3.5 yrs from start of rx and nearly 2 years NED. I did experience severe colitis and experienced a bowel perforation which nearly Killed me but I was on 10 mg and received 6 infusions. I pray your friend will be an iPi responder – when it works it works really well.
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- August 16, 2014 at 1:13 pm
I am similar age and am stage 4 with liver/lung & lymph node lesions – no brain or bone. I have only been treated with iPi and am 3.5 yrs from start of rx and nearly 2 years NED. I did experience severe colitis and experienced a bowel perforation which nearly Killed me but I was on 10 mg and received 6 infusions. I pray your friend will be an iPi responder – when it works it works really well.
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- August 16, 2014 at 1:13 pm
I am similar age and am stage 4 with liver/lung & lymph node lesions – no brain or bone. I have only been treated with iPi and am 3.5 yrs from start of rx and nearly 2 years NED. I did experience severe colitis and experienced a bowel perforation which nearly Killed me but I was on 10 mg and received 6 infusions. I pray your friend will be an iPi responder – when it works it works really well.
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- August 17, 2014 at 2:07 pm
Hello Amanda,
My husband was an Ipi responder. He was originally diagnosed in Jan 2008 and became Stage IV in Oct. 2010 but then he started Ipi in Mar. 2011 10 mg/kg and GM-CSF (self injection shots everyday for 14 days and then 7 days off. He became NED in Oct. of 2012 He remained on the maintenance part of his clinical trial where after the original 4 doses in 12 weeks he had doses of Ipi every 12 weeks until he quit the trial in Dec. 2013. He had little side effects mostly itching, fatigue after infusions but he does have white eyebrows and lost most of the skin pigmentation in his face and neck. You can read more about his case in his profile.
Good luck I hope it is successful with your friend.
Judy (loving wife of Gene Stage IV and now NED)
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- August 17, 2014 at 10:23 pm
My 4 ipi infusions were at the end of 2012. Melanoma was first discovered in my lung, resected before I started ipi, and then 2 mets to the brain, radiated during the course of ipi. Only one small subq tumor discovered since. During my ipi treatment I had fatigue and major itching. I also had some problems with diarrhea but that may have come from other things than the ipi. About three months after ipi, I started to have problems with thyroid, hyper, finally diagnosed as Grave's disease in January of this year. This was likely an autoimmune response to ipi. I also have been diagonsed wtih hypophysits, another autoimmune disorder. I don't regret taking the ipi but would be glad to have had some other options in 2012 that were less potentially harmful. I have recently read a research study specifically directed to the relationship between ipi and side effects that had a relatively large research population over a number of years. A significant relationship was found between the postive benefits of ipi and the existence and intensity of side effects. This was a question I have wondered about for some time and about which I have read other literature, but this study seemed to me ( a non-medical person but a sometimes researcher) as the best study I have seen designed specifically to answer this question.
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- August 17, 2014 at 10:23 pm
My 4 ipi infusions were at the end of 2012. Melanoma was first discovered in my lung, resected before I started ipi, and then 2 mets to the brain, radiated during the course of ipi. Only one small subq tumor discovered since. During my ipi treatment I had fatigue and major itching. I also had some problems with diarrhea but that may have come from other things than the ipi. About three months after ipi, I started to have problems with thyroid, hyper, finally diagnosed as Grave's disease in January of this year. This was likely an autoimmune response to ipi. I also have been diagonsed wtih hypophysits, another autoimmune disorder. I don't regret taking the ipi but would be glad to have had some other options in 2012 that were less potentially harmful. I have recently read a research study specifically directed to the relationship between ipi and side effects that had a relatively large research population over a number of years. A significant relationship was found between the postive benefits of ipi and the existence and intensity of side effects. This was a question I have wondered about for some time and about which I have read other literature, but this study seemed to me ( a non-medical person but a sometimes researcher) as the best study I have seen designed specifically to answer this question.
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- August 17, 2014 at 10:23 pm
My 4 ipi infusions were at the end of 2012. Melanoma was first discovered in my lung, resected before I started ipi, and then 2 mets to the brain, radiated during the course of ipi. Only one small subq tumor discovered since. During my ipi treatment I had fatigue and major itching. I also had some problems with diarrhea but that may have come from other things than the ipi. About three months after ipi, I started to have problems with thyroid, hyper, finally diagnosed as Grave's disease in January of this year. This was likely an autoimmune response to ipi. I also have been diagonsed wtih hypophysits, another autoimmune disorder. I don't regret taking the ipi but would be glad to have had some other options in 2012 that were less potentially harmful. I have recently read a research study specifically directed to the relationship between ipi and side effects that had a relatively large research population over a number of years. A significant relationship was found between the postive benefits of ipi and the existence and intensity of side effects. This was a question I have wondered about for some time and about which I have read other literature, but this study seemed to me ( a non-medical person but a sometimes researcher) as the best study I have seen designed specifically to answer this question.
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- August 17, 2014 at 2:07 pm
Hello Amanda,
My husband was an Ipi responder. He was originally diagnosed in Jan 2008 and became Stage IV in Oct. 2010 but then he started Ipi in Mar. 2011 10 mg/kg and GM-CSF (self injection shots everyday for 14 days and then 7 days off. He became NED in Oct. of 2012 He remained on the maintenance part of his clinical trial where after the original 4 doses in 12 weeks he had doses of Ipi every 12 weeks until he quit the trial in Dec. 2013. He had little side effects mostly itching, fatigue after infusions but he does have white eyebrows and lost most of the skin pigmentation in his face and neck. You can read more about his case in his profile.
Good luck I hope it is successful with your friend.
Judy (loving wife of Gene Stage IV and now NED)
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- August 17, 2014 at 2:07 pm
Hello Amanda,
My husband was an Ipi responder. He was originally diagnosed in Jan 2008 and became Stage IV in Oct. 2010 but then he started Ipi in Mar. 2011 10 mg/kg and GM-CSF (self injection shots everyday for 14 days and then 7 days off. He became NED in Oct. of 2012 He remained on the maintenance part of his clinical trial where after the original 4 doses in 12 weeks he had doses of Ipi every 12 weeks until he quit the trial in Dec. 2013. He had little side effects mostly itching, fatigue after infusions but he does have white eyebrows and lost most of the skin pigmentation in his face and neck. You can read more about his case in his profile.
Good luck I hope it is successful with your friend.
Judy (loving wife of Gene Stage IV and now NED)
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- August 18, 2014 at 2:40 pm
My husband is Stage IV melanoma. He recently completed 4 treatments of Ipi. Unfortunately it was not effective. However, he will starting another drug, Nivolumab, at Emory University. This drug has not been approved yet by the FDA though approval is expected soon. It has shown a greater success rate than Ipi, according to our doctors and the research data I've read online in medical journal publications. Because the drug is not yet approved he will technically be enrolled in a clinical trial at Emory.
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- August 18, 2014 at 2:40 pm
My husband is Stage IV melanoma. He recently completed 4 treatments of Ipi. Unfortunately it was not effective. However, he will starting another drug, Nivolumab, at Emory University. This drug has not been approved yet by the FDA though approval is expected soon. It has shown a greater success rate than Ipi, according to our doctors and the research data I've read online in medical journal publications. Because the drug is not yet approved he will technically be enrolled in a clinical trial at Emory.
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- August 18, 2014 at 2:40 pm
My husband is Stage IV melanoma. He recently completed 4 treatments of Ipi. Unfortunately it was not effective. However, he will starting another drug, Nivolumab, at Emory University. This drug has not been approved yet by the FDA though approval is expected soon. It has shown a greater success rate than Ipi, according to our doctors and the research data I've read online in medical journal publications. Because the drug is not yet approved he will technically be enrolled in a clinical trial at Emory.
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- August 18, 2014 at 8:10 pm
Since I have joined this site, I have been overwhelmed by the outpour of care and support by everyone on here. I cannot begin to express my gratitude. I am constantly amazed by all of the strength and commitment that you all so generously share with one another.
I wish you all the best, thank you so much.
~Amanda
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- August 18, 2014 at 8:10 pm
Since I have joined this site, I have been overwhelmed by the outpour of care and support by everyone on here. I cannot begin to express my gratitude. I am constantly amazed by all of the strength and commitment that you all so generously share with one another.
I wish you all the best, thank you so much.
~Amanda
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- August 18, 2014 at 8:10 pm
Since I have joined this site, I have been overwhelmed by the outpour of care and support by everyone on here. I cannot begin to express my gratitude. I am constantly amazed by all of the strength and commitment that you all so generously share with one another.
I wish you all the best, thank you so much.
~Amanda
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