New Melanoma Stage III – Looking for Advice/reviews of Ipi

Hi George,

Sorry you joined the club.  Yervoy (we refer to it as simply ipi) has been used by a great many people here.  It is in-fact the best FDA approved treatment option for adjuvant Stage III.  Side-effects vary wildly.  The best advice is to be sure to be under the care of a melanoma specialist, and monitor carefully for adverse reactions.  It appears the worst one is endocrine damage (thyroid) so they will monitor your blood closely before each infusion.  Many get almost no side-effects, and some don't even make it past the first infusion but given the hand you have been dealt, I'm sure most here will say go for it.  BTW, those who do get some side-effects also appear to be the most robust responders.  Your only other option to consider would be a trial where some stage IV drugs are being tried as first line for stage III.

Gary

Hi George,

Sorry you joined the club.  Yervoy (we refer to it as simply ipi) has been used by a great many people here.  It is in-fact the best FDA approved treatment option for adjuvant Stage III.  Side-effects vary wildly.  The best advice is to be sure to be under the care of a melanoma specialist, and monitor carefully for adverse reactions.  It appears the worst one is endocrine damage (thyroid) so they will monitor your blood closely before each infusion.  Many get almost no side-effects, and some don't even make it past the first infusion but given the hand you have been dealt, I'm sure most here will say go for it.  BTW, those who do get some side-effects also appear to be the most robust responders.  Your only other option to consider would be a trial where some stage IV drugs are being tried as first line for stage III.

Gary

Hi George,

Sorry you joined the club.  Yervoy (we refer to it as simply ipi) has been used by a great many people here.  It is in-fact the best FDA approved treatment option for adjuvant Stage III.  Side-effects vary wildly.  The best advice is to be sure to be under the care of a melanoma specialist, and monitor carefully for adverse reactions.  It appears the worst one is endocrine damage (thyroid) so they will monitor your blood closely before each infusion.  Many get almost no side-effects, and some don't even make it past the first infusion but given the hand you have been dealt, I'm sure most here will say go for it.  BTW, those who do get some side-effects also appear to be the most robust responders.  Your only other option to consider would be a trial where some stage IV drugs are being tried as first line for stage III.

Gary

Sorry you've joined our club, but you've come the right place for info from real patients. I did Ipi in the adjuvant setting when diagnosed 3B last year. I got through all 4 main infusions and even 2 maintenance infusions. Had no major side effects. Unfortunately a recurrance was found in September which is why I went onto the Ipi/Nivo combo treatment. But, again, I did Ipi 4 times with the combo and the worst side effect I have experienced so far was a couple weeks of fevers and basically feeling really crappy including liver enzymes going a bit high. After some rest my liver enzymes are back down and I am feeling normal again. 

As Gary said, make sure you're seeing a melanoma specialist. They really understand the serious side effects of immunotherapy and how to watch closely for things and also how to properly treat them.

I have a timeline in my profile of my time on Ipi and the different side effects I came across.

All the best,

Sorry you've joined our club, but you've come the right place for info from real patients. I did Ipi in the adjuvant setting when diagnosed 3B last year. I got through all 4 main infusions and even 2 maintenance infusions. Had no major side effects. Unfortunately a recurrance was found in September which is why I went onto the Ipi/Nivo combo treatment. But, again, I did Ipi 4 times with the combo and the worst side effect I have experienced so far was a couple weeks of fevers and basically feeling really crappy including liver enzymes going a bit high. After some rest my liver enzymes are back down and I am feeling normal again. 

As Gary said, make sure you're seeing a melanoma specialist. They really understand the serious side effects of immunotherapy and how to watch closely for things and also how to properly treat them.

I have a timeline in my profile of my time on Ipi and the different side effects I came across.

All the best,

Sorry you've joined our club, but you've come the right place for info from real patients. I did Ipi in the adjuvant setting when diagnosed 3B last year. I got through all 4 main infusions and even 2 maintenance infusions. Had no major side effects. Unfortunately a recurrance was found in September which is why I went onto the Ipi/Nivo combo treatment. But, again, I did Ipi 4 times with the combo and the worst side effect I have experienced so far was a couple weeks of fevers and basically feeling really crappy including liver enzymes going a bit high. After some rest my liver enzymes are back down and I am feeling normal again. 

As Gary said, make sure you're seeing a melanoma specialist. They really understand the serious side effects of immunotherapy and how to watch closely for things and also how to properly treat them.

I have a timeline in my profile of my time on Ipi and the different side effects I came across.

All the best,

I received Ipi starting in November 2015.  The first 4 treatments (10 mg) are given in 3 week intervals followed by treatment once every 3 months and lowered to I believe 3 mg dose.  I received the first 3 big treatments and felt great outside of being very itchy.  Shortly after my 3rd treatment I came down with a horrible head cold and sinus infection.  I had a miserable head ache that would not go away and so my onc ordered an MRI and put me on prednisone.  I was standing in Walgreens filling my script for the prednisone when I got a call from my onc.  He said, "we have a problem" and my heart fell out of my chest with immediate panic!!  He then told me that my pituitary was swollen.  I was set to have my 4th treatment on January 25 and he did not want to give me the treatment until he had another peak at my brain.  My swelling did go down but he discontinued treatment saying, "the known risks outweigh the unknown benefits at this point".  I was a bit (okay… a lot) scared at that point.  I just had an MRI on the 18th and doc said my brain looks good and these head aches must just be run of the mill.  If I could have contnued treatment I would have in an instant.  Good luck.  I am stage 3b and NED since September 2015.

 

I received Ipi starting in November 2015.  The first 4 treatments (10 mg) are given in 3 week intervals followed by treatment once every 3 months and lowered to I believe 3 mg dose.  I received the first 3 big treatments and felt great outside of being very itchy.  Shortly after my 3rd treatment I came down with a horrible head cold and sinus infection.  I had a miserable head ache that would not go away and so my onc ordered an MRI and put me on prednisone.  I was standing in Walgreens filling my script for the prednisone when I got a call from my onc.  He said, "we have a problem" and my heart fell out of my chest with immediate panic!!  He then told me that my pituitary was swollen.  I was set to have my 4th treatment on January 25 and he did not want to give me the treatment until he had another peak at my brain.  My swelling did go down but he discontinued treatment saying, "the known risks outweigh the unknown benefits at this point".  I was a bit (okay… a lot) scared at that point.  I just had an MRI on the 18th and doc said my brain looks good and these head aches must just be run of the mill.  If I could have contnued treatment I would have in an instant.  Good luck.  I am stage 3b and NED since September 2015.

 

I received Ipi starting in November 2015.  The first 4 treatments (10 mg) are given in 3 week intervals followed by treatment once every 3 months and lowered to I believe 3 mg dose.  I received the first 3 big treatments and felt great outside of being very itchy.  Shortly after my 3rd treatment I came down with a horrible head cold and sinus infection.  I had a miserable head ache that would not go away and so my onc ordered an MRI and put me on prednisone.  I was standing in Walgreens filling my script for the prednisone when I got a call from my onc.  He said, "we have a problem" and my heart fell out of my chest with immediate panic!!  He then told me that my pituitary was swollen.  I was set to have my 4th treatment on January 25 and he did not want to give me the treatment until he had another peak at my brain.  My swelling did go down but he discontinued treatment saying, "the known risks outweigh the unknown benefits at this point".  I was a bit (okay… a lot) scared at that point.  I just had an MRI on the 18th and doc said my brain looks good and these head aches must just be run of the mill.  If I could have contnued treatment I would have in an instant.  Good luck.  I am stage 3b and NED since September 2015.

 

Hi George, 

Sorry you had the need to join this forum.  First, and perhaps most importantly, many Stage III peeps never progress!!!  Second, there is a real benefit in real studies that demonstrate decreased progression in folks in your shoes treated with ipi.  Here is a post that includes an article with data to that effect as well as links to other data that may be important for you down the road….

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

Melanoma choices are never easy.  Hang in there.  Many on this board have great info to share.  I wish you well.  Celeste

Hi George, 

Sorry you had the need to join this forum.  First, and perhaps most importantly, many Stage III peeps never progress!!!  Second, there is a real benefit in real studies that demonstrate decreased progression in folks in your shoes treated with ipi.  Here is a post that includes an article with data to that effect as well as links to other data that may be important for you down the road….

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

Melanoma choices are never easy.  Hang in there.  Many on this board have great info to share.  I wish you well.  Celeste

Hi George, 

Sorry you had the need to join this forum.  First, and perhaps most importantly, many Stage III peeps never progress!!!  Second, there is a real benefit in real studies that demonstrate decreased progression in folks in your shoes treated with ipi.  Here is a post that includes an article with data to that effect as well as links to other data that may be important for you down the road….

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

Melanoma choices are never easy.  Hang in there.  Many on this board have great info to share.  I wish you well.  Celeste

Hey George. Sorry to see you here, but this forum is a great resource. I was diagnosed stage IIIB early last year and had one dose of ipi before I had to stop due to insurance issues. Good thing too, because I had a pretty bad 2 week headache about a month after and they found my pituitary gland was swollen. It no longer produces cortisol stimulating hormones or thyroid stimulating hormones and I am told I will be on replacement hormones for life. Unfortunately the ipi didn’t help me either because they found another infected lymph node just before Christmas, but who knows, they might have found more if I didn’t take ipi. You have to weigh the pros with the cons. Taking some pills ain’t so bad.

Hey George. Sorry to see you here, but this forum is a great resource. I was diagnosed stage IIIB early last year and had one dose of ipi before I had to stop due to insurance issues. Good thing too, because I had a pretty bad 2 week headache about a month after and they found my pituitary gland was swollen. It no longer produces cortisol stimulating hormones or thyroid stimulating hormones and I am told I will be on replacement hormones for life. Unfortunately the ipi didn’t help me either because they found another infected lymph node just before Christmas, but who knows, they might have found more if I didn’t take ipi. You have to weigh the pros with the cons. Taking some pills ain’t so bad.

Hey George. Sorry to see you here, but this forum is a great resource. I was diagnosed stage IIIB early last year and had one dose of ipi before I had to stop due to insurance issues. Good thing too, because I had a pretty bad 2 week headache about a month after and they found my pituitary gland was swollen. It no longer produces cortisol stimulating hormones or thyroid stimulating hormones and I am told I will be on replacement hormones for life. Unfortunately the ipi didn’t help me either because they found another infected lymph node just before Christmas, but who knows, they might have found more if I didn’t take ipi. You have to weigh the pros with the cons. Taking some pills ain’t so bad.