Yervoy advice/experience

Over the years managing the possible side effects associated with Yervoy has become bettter and better. It's best to be treated by a specialist with lots of experience with Yervoy.

It's important to immediatly act upon the slightest signs. Don't wait and see. Have been treated with Yervoy myself without any troublesome side effects.

Over the years managing the possible side effects associated with Yervoy has become bettter and better. It's best to be treated by a specialist with lots of experience with Yervoy.

It's important to immediatly act upon the slightest signs. Don't wait and see. Have been treated with Yervoy myself without any troublesome side effects.

Over the years managing the possible side effects associated with Yervoy has become bettter and better. It's best to be treated by a specialist with lots of experience with Yervoy.

It's important to immediatly act upon the slightest signs. Don't wait and see. Have been treated with Yervoy myself without any troublesome side effects.

I had 2 infusions of yervoy and the only side effect was a rash. however it did nothing to help me and I kept deteriorating on it. I am now on keytruda onto my 9th infusion and felt better after only 2 infusions. I believe the side effects on it are less severe and affect fewer people. For myself again a rash some tiredness and it has affected my thyroid so I am on thyroid meds now. 

I had 2 infusions of yervoy and the only side effect was a rash. however it did nothing to help me and I kept deteriorating on it. I am now on keytruda onto my 9th infusion and felt better after only 2 infusions. I believe the side effects on it are less severe and affect fewer people. For myself again a rash some tiredness and it has affected my thyroid so I am on thyroid meds now. 

I had 2 infusions of yervoy and the only side effect was a rash. however it did nothing to help me and I kept deteriorating on it. I am now on keytruda onto my 9th infusion and felt better after only 2 infusions. I believe the side effects on it are less severe and affect fewer people. For myself again a rash some tiredness and it has affected my thyroid so I am on thyroid meds now. 

Here's your good news: 

A couple of articles demonstrating the effectiveness of ipi, esp when combined with radiation for brain mets – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/brain-mets-in-melanomathe-latest-from.html

This review addresses the positive benefits of ipi as well – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html

Yes, side effects can occur with ipi.  However, as others mentioned…if you stay alert to how your grandfather is doing and report any concerns as soon as you note them….we have learned much more about what to expect with ipi and how to deal with any side effects that occur since it was FDA approved in 2011,

I wish you and your grandfather my best.  Celeste

Here's your good news: 

A couple of articles demonstrating the effectiveness of ipi, esp when combined with radiation for brain mets – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/brain-mets-in-melanomathe-latest-from.html

This review addresses the positive benefits of ipi as well – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html

Yes, side effects can occur with ipi.  However, as others mentioned…if you stay alert to how your grandfather is doing and report any concerns as soon as you note them….we have learned much more about what to expect with ipi and how to deal with any side effects that occur since it was FDA approved in 2011,

I wish you and your grandfather my best.  Celeste

Here's your good news: 

A couple of articles demonstrating the effectiveness of ipi, esp when combined with radiation for brain mets – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/brain-mets-in-melanomathe-latest-from.html

This review addresses the positive benefits of ipi as well – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html

Yes, side effects can occur with ipi.  However, as others mentioned…if you stay alert to how your grandfather is doing and report any concerns as soon as you note them….we have learned much more about what to expect with ipi and how to deal with any side effects that occur since it was FDA approved in 2011,

I wish you and your grandfather my best.  Celeste

I did 4 infusions of ipi and worse side effect for me was hypothyroidism. I did have some cramping and fatigue but mild. Side effects for this drug will be different and I think others here have provided sound advice. If your oncologist is experienced with Yervoy and your grandfather and those around him be diligent with any changes; I think it's very managable. Wishing Grandpa and family the best!

Josh

I did 4 infusions of ipi and worse side effect for me was hypothyroidism. I did have some cramping and fatigue but mild. Side effects for this drug will be different and I think others here have provided sound advice. If your oncologist is experienced with Yervoy and your grandfather and those around him be diligent with any changes; I think it's very managable. Wishing Grandpa and family the best!

Josh

I did 4 infusions of ipi and worse side effect for me was hypothyroidism. I did have some cramping and fatigue but mild. Side effects for this drug will be different and I think others here have provided sound advice. If your oncologist is experienced with Yervoy and your grandfather and those around him be diligent with any changes; I think it's very managable. Wishing Grandpa and family the best!

Josh

Hello,

First of all everyone responds to Yervoy differently.  Each are individualized so don't always assume the bad effects will strike.

My husband started on a clinical trial of Yervoy and GM-CSF in Mar. 2011 just before it became approved and was known as Ipi or its name was actually Ippilimaub.  He had a few side effects but none of the bad ones.  He was stage IV with mets in liver, lungs, pressing on his cervical spine at the C-1, C-2 level and 4 or 5 sub q's.

He had the rash, some joint pain (which could have been caused by the injections of GMCSF), fatigue.  Then his eyebrows starting turning white (this thrilled the onc as he said it meant it was working) and later his beard and mustache turned white haired and he lost pigmentation in the face down to the neck (again onc say all good signs).

By Oct. 2012 he was NED (no evidence of disease) and he remains that way till today.

Also I have read that radiation with Yervoy sometimes makes it work better but he had no experience with this but with some research you can find out more.

You can read more about him on his profile if you would like and you can do a search on the board for Yervoy or Ippi to find out more.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

First of all everyone responds to Yervoy differently.  Each are individualized so don't always assume the bad effects will strike.

My husband started on a clinical trial of Yervoy and GM-CSF in Mar. 2011 just before it became approved and was known as Ipi or its name was actually Ippilimaub.  He had a few side effects but none of the bad ones.  He was stage IV with mets in liver, lungs, pressing on his cervical spine at the C-1, C-2 level and 4 or 5 sub q's.

He had the rash, some joint pain (which could have been caused by the injections of GMCSF), fatigue.  Then his eyebrows starting turning white (this thrilled the onc as he said it meant it was working) and later his beard and mustache turned white haired and he lost pigmentation in the face down to the neck (again onc say all good signs).

By Oct. 2012 he was NED (no evidence of disease) and he remains that way till today.

Also I have read that radiation with Yervoy sometimes makes it work better but he had no experience with this but with some research you can find out more.

You can read more about him on his profile if you would like and you can do a search on the board for Yervoy or Ippi to find out more.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

First of all everyone responds to Yervoy differently.  Each are individualized so don't always assume the bad effects will strike.

My husband started on a clinical trial of Yervoy and GM-CSF in Mar. 2011 just before it became approved and was known as Ipi or its name was actually Ippilimaub.  He had a few side effects but none of the bad ones.  He was stage IV with mets in liver, lungs, pressing on his cervical spine at the C-1, C-2 level and 4 or 5 sub q's.

He had the rash, some joint pain (which could have been caused by the injections of GMCSF), fatigue.  Then his eyebrows starting turning white (this thrilled the onc as he said it meant it was working) and later his beard and mustache turned white haired and he lost pigmentation in the face down to the neck (again onc say all good signs).

By Oct. 2012 he was NED (no evidence of disease) and he remains that way till today.

Also I have read that radiation with Yervoy sometimes makes it work better but he had no experience with this but with some research you can find out more.

You can read more about him on his profile if you would like and you can do a search on the board for Yervoy or Ippi to find out more.

Judy (loving wife of Gene Stage IV and now NED)

Hi,

I have had two Yervoy infusion therapies. Each was a series of four infusions, one of which was combined with SRS radiation treatment. I found the Yervoy very tolerable and only had a mild rash which was easily treatable, some minor intestinal discomfort which an over the counter product settled down. The radiation left me a bit fatigued but I think the Yervoy overall was really easy. My Nov '14 brain and Dec '14 body scans were both clear but I am dealing with some pretty uncomfortable headaches since mid Dec which have me a bit concerned. My Onc says I am a responder but hard to be convinced with recent headaches. I am waiting on last Monday's brain MRI results to see if headaches are caused from delayed radiation necrosis or swelling from last June SRS radiation or perhaps a reoccurrence.  I'll know that answer shortly and clearly hoping for the swelling diagnosis. I am hopeful that your Dad has as easy a time with the Yervoy as I and many others have had. It is critical to be very aware of anything that feels off during the Yervoy treatment and keep your Dr informed so they can intervene easy on. My Drs assistant was pretty clear that she had more interest in my skin condition and bowel movements than anybody else on the planet. Was a little embarrassing at the time but in hindsight as very thankful that they were on alert for any changes to my normal rhythms.  I wish you both smooth sailing and good luck. 

Hi,

I have had two Yervoy infusion therapies. Each was a series of four infusions, one of which was combined with SRS radiation treatment. I found the Yervoy very tolerable and only had a mild rash which was easily treatable, some minor intestinal discomfort which an over the counter product settled down. The radiation left me a bit fatigued but I think the Yervoy overall was really easy. My Nov '14 brain and Dec '14 body scans were both clear but I am dealing with some pretty uncomfortable headaches since mid Dec which have me a bit concerned. My Onc says I am a responder but hard to be convinced with recent headaches. I am waiting on last Monday's brain MRI results to see if headaches are caused from delayed radiation necrosis or swelling from last June SRS radiation or perhaps a reoccurrence.  I'll know that answer shortly and clearly hoping for the swelling diagnosis. I am hopeful that your Dad has as easy a time with the Yervoy as I and many others have had. It is critical to be very aware of anything that feels off during the Yervoy treatment and keep your Dr informed so they can intervene easy on. My Drs assistant was pretty clear that she had more interest in my skin condition and bowel movements than anybody else on the planet. Was a little embarrassing at the time but in hindsight as very thankful that they were on alert for any changes to my normal rhythms.  I wish you both smooth sailing and good luck. 

Hi,

I have had two Yervoy infusion therapies. Each was a series of four infusions, one of which was combined with SRS radiation treatment. I found the Yervoy very tolerable and only had a mild rash which was easily treatable, some minor intestinal discomfort which an over the counter product settled down. The radiation left me a bit fatigued but I think the Yervoy overall was really easy. My Nov '14 brain and Dec '14 body scans were both clear but I am dealing with some pretty uncomfortable headaches since mid Dec which have me a bit concerned. My Onc says I am a responder but hard to be convinced with recent headaches. I am waiting on last Monday's brain MRI results to see if headaches are caused from delayed radiation necrosis or swelling from last June SRS radiation or perhaps a reoccurrence.  I'll know that answer shortly and clearly hoping for the swelling diagnosis. I am hopeful that your Dad has as easy a time with the Yervoy as I and many others have had. It is critical to be very aware of anything that feels off during the Yervoy treatment and keep your Dr informed so they can intervene easy on. My Drs assistant was pretty clear that she had more interest in my skin condition and bowel movements than anybody else on the planet. Was a little embarrassing at the time but in hindsight as very thankful that they were on alert for any changes to my normal rhythms.  I wish you both smooth sailing and good luck. 

In 2009, I had an amazing response to Yervoy. At the time, I had metastases popping up everywhere (stomach, knee, intestines, spleen, liver, lungs, brain. The Yervoy helped to get things under control and even got rid of everything in the liver and lungs. I shoud note that I had some surgeries in addition to the Yervoy (splenectomy, knee removal, intestine surgery, raditation to the brain), however without the Yervoy I am pretty confident that I'd be toast. As for side effects, back then the only side effect I had was extreme itching. Recently, however, I got back on Yervoy, and after two doses developed colitis, so that's not been great. Still, in my experience this drug was nothing less that a lifesaver. 

Best of luck!

Josh

In 2009, I had an amazing response to Yervoy. At the time, I had metastases popping up everywhere (stomach, knee, intestines, spleen, liver, lungs, brain. The Yervoy helped to get things under control and even got rid of everything in the liver and lungs. I shoud note that I had some surgeries in addition to the Yervoy (splenectomy, knee removal, intestine surgery, raditation to the brain), however without the Yervoy I am pretty confident that I'd be toast. As for side effects, back then the only side effect I had was extreme itching. Recently, however, I got back on Yervoy, and after two doses developed colitis, so that's not been great. Still, in my experience this drug was nothing less that a lifesaver. 

Best of luck!

Josh

In 2009, I had an amazing response to Yervoy. At the time, I had metastases popping up everywhere (stomach, knee, intestines, spleen, liver, lungs, brain. The Yervoy helped to get things under control and even got rid of everything in the liver and lungs. I shoud note that I had some surgeries in addition to the Yervoy (splenectomy, knee removal, intestine surgery, raditation to the brain), however without the Yervoy I am pretty confident that I'd be toast. As for side effects, back then the only side effect I had was extreme itching. Recently, however, I got back on Yervoy, and after two doses developed colitis, so that's not been great. Still, in my experience this drug was nothing less that a lifesaver. 

Best of luck!

Josh