Ipy versus Nivo trial

Some here have had side effects — especially colitis, and endocrine issues — on the range from lower grade to serious. But it's said that most doctors are much more experienced at managing these side effects than they were a few years ago. Since you are going to be in a clinical trial setting, I would certainly *expect* / hope your doctors to be on top of things. 

I did a standard 4-cycle IPI treatment in 2011. My oncologist "read me the riot act" on watching out for side effects, especially colitis. I lucky to not experience that, which I also believe is the case a majority of IPI patients. I am getting Nivo now in a clinical trial. So far I've been lucky there too, 17 months in. There were some side effects the first 6 months or so, mainly arthralgia, but nothing seriously health-impacting. So, for myself I can say, so far" it's been fine. 

Some here have had side effects — especially colitis, and endocrine issues — on the range from lower grade to serious. But it's said that most doctors are much more experienced at managing these side effects than they were a few years ago. Since you are going to be in a clinical trial setting, I would certainly *expect* / hope your doctors to be on top of things. 

I did a standard 4-cycle IPI treatment in 2011. My oncologist "read me the riot act" on watching out for side effects, especially colitis. I lucky to not experience that, which I also believe is the case a majority of IPI patients. I am getting Nivo now in a clinical trial. So far I've been lucky there too, 17 months in. There were some side effects the first 6 months or so, mainly arthralgia, but nothing seriously health-impacting. So, for myself I can say, so far" it's been fine. 

Some here have had side effects — especially colitis, and endocrine issues — on the range from lower grade to serious. But it's said that most doctors are much more experienced at managing these side effects than they were a few years ago. Since you are going to be in a clinical trial setting, I would certainly *expect* / hope your doctors to be on top of things. 

I did a standard 4-cycle IPI treatment in 2011. My oncologist "read me the riot act" on watching out for side effects, especially colitis. I lucky to not experience that, which I also believe is the case a majority of IPI patients. I am getting Nivo now in a clinical trial. So far I've been lucky there too, 17 months in. There were some side effects the first 6 months or so, mainly arthralgia, but nothing seriously health-impacting. So, for myself I can say, so far" it's been fine. 

I wasn't in a trial, but I got ipi last winter, followed by now currently getting Keytruda, which is essentially the same as Nivo. Here's my experience with the two.

With ipi, I developed a rash almost immediately, within days of the first infusion. I was on prednisone for several months. That was my only side effect, aside from some mild diarrhea, until after the last infusion. About 2-3 weeks after that I developed a lot of gas an abdominal discomfort that the doctor thought was from the predisone. He told me to take Maalox. That helped for a while, but soon it got worse. They determined that it wasn't colitis, and had me eat the BRAT diet (bananas, rice, applesauce, toast) which didn't help much. I lost about 15 pounds. But this all only lasted about 3 weeks and I began to return to normal. I could have stood to keep the weight off, but alas, I have put it all back on. lol

In July I started with Keytruda. I've had three cycles so far, go for the fourth this week. The only side effect I have had with it is some mild to moderate itching on my legs, and occasionally on my chest, that comes and goes. And based on the scan I had last week, it is doing the job! Both my skin lesions and several lung mets are shrinking.

Good luck on the trial. Keep us informed with how you're doing!

-Bill

I wasn't in a trial, but I got ipi last winter, followed by now currently getting Keytruda, which is essentially the same as Nivo. Here's my experience with the two.

With ipi, I developed a rash almost immediately, within days of the first infusion. I was on prednisone for several months. That was my only side effect, aside from some mild diarrhea, until after the last infusion. About 2-3 weeks after that I developed a lot of gas an abdominal discomfort that the doctor thought was from the predisone. He told me to take Maalox. That helped for a while, but soon it got worse. They determined that it wasn't colitis, and had me eat the BRAT diet (bananas, rice, applesauce, toast) which didn't help much. I lost about 15 pounds. But this all only lasted about 3 weeks and I began to return to normal. I could have stood to keep the weight off, but alas, I have put it all back on. lol

In July I started with Keytruda. I've had three cycles so far, go for the fourth this week. The only side effect I have had with it is some mild to moderate itching on my legs, and occasionally on my chest, that comes and goes. And based on the scan I had last week, it is doing the job! Both my skin lesions and several lung mets are shrinking.

Good luck on the trial. Keep us informed with how you're doing!

-Bill

I wasn't in a trial, but I got ipi last winter, followed by now currently getting Keytruda, which is essentially the same as Nivo. Here's my experience with the two.

With ipi, I developed a rash almost immediately, within days of the first infusion. I was on prednisone for several months. That was my only side effect, aside from some mild diarrhea, until after the last infusion. About 2-3 weeks after that I developed a lot of gas an abdominal discomfort that the doctor thought was from the predisone. He told me to take Maalox. That helped for a while, but soon it got worse. They determined that it wasn't colitis, and had me eat the BRAT diet (bananas, rice, applesauce, toast) which didn't help much. I lost about 15 pounds. But this all only lasted about 3 weeks and I began to return to normal. I could have stood to keep the weight off, but alas, I have put it all back on. lol

In July I started with Keytruda. I've had three cycles so far, go for the fourth this week. The only side effect I have had with it is some mild to moderate itching on my legs, and occasionally on my chest, that comes and goes. And based on the scan I had last week, it is doing the job! Both my skin lesions and several lung mets are shrinking.

Good luck on the trial. Keep us informed with how you're doing!

-Bill

Helo, I was on a Clinical Trial for Yervoy and bevacizumab. I developed diarrhea immediately and they booted me off of the trial.  Make sure that you do not have more than 7 episodes of diarrhea per day because that was their secret number that they never told me. the treatment was actually working because 1 met disappeared. definatly figure out your diet. I am still figuring mine out but I also have IBS that I never wanted to admit I have.  So it is important to find out if you have any types of food that could complicate digestive problems.  stay away from pepper, garlic,onions, and the obvious- spicy foods.  I even tried simple salads with no dressings and that didn't work for me.  So i am forced to take immodium but I can only take 1 per day or my system gets stopped up and can burst.  So just keep an eye on those things.  You will know if you get Yervoy.  Diarrhea is the most common and most dangerous side affect.  Keep it under control and let you doctor know if you have abdominal pain.  I hope this helps you and God bless you through your trial.

Helo, I was on a Clinical Trial for Yervoy and bevacizumab. I developed diarrhea immediately and they booted me off of the trial.  Make sure that you do not have more than 7 episodes of diarrhea per day because that was their secret number that they never told me. the treatment was actually working because 1 met disappeared. definatly figure out your diet. I am still figuring mine out but I also have IBS that I never wanted to admit I have.  So it is important to find out if you have any types of food that could complicate digestive problems.  stay away from pepper, garlic,onions, and the obvious- spicy foods.  I even tried simple salads with no dressings and that didn't work for me.  So i am forced to take immodium but I can only take 1 per day or my system gets stopped up and can burst.  So just keep an eye on those things.  You will know if you get Yervoy.  Diarrhea is the most common and most dangerous side affect.  Keep it under control and let you doctor know if you have abdominal pain.  I hope this helps you and God bless you through your trial.

Helo, I was on a Clinical Trial for Yervoy and bevacizumab. I developed diarrhea immediately and they booted me off of the trial.  Make sure that you do not have more than 7 episodes of diarrhea per day because that was their secret number that they never told me. the treatment was actually working because 1 met disappeared. definatly figure out your diet. I am still figuring mine out but I also have IBS that I never wanted to admit I have.  So it is important to find out if you have any types of food that could complicate digestive problems.  stay away from pepper, garlic,onions, and the obvious- spicy foods.  I even tried simple salads with no dressings and that didn't work for me.  So i am forced to take immodium but I can only take 1 per day or my system gets stopped up and can burst.  So just keep an eye on those things.  You will know if you get Yervoy.  Diarrhea is the most common and most dangerous side affect.  Keep it under control and let you doctor know if you have abdominal pain.  I hope this helps you and God bless you through your trial.

I am on this trial now and on week 3. On week 3 the day after my infusion (opdivo) I developed itchy skin and welts on my ankles calves and arms. So I guess I am getting Opdivo.

Tom

I am on this trial now and on week 3. On week 3 the day after my infusion (opdivo) I developed itchy skin and welts on my ankles calves and arms. So I guess I am getting Opdivo.

Tom

I am on this trial now and on week 3. On week 3 the day after my infusion (opdivo) I developed itchy skin and welts on my ankles calves and arms. So I guess I am getting Opdivo.

Tom