› Forums › General Melanoma Community › Ippi (Yervoy) Colitis Question
- This topic has 15 replies, 5 voices, and was last updated 9 years, 2 months ago by
jogo.
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- February 6, 2015 at 4:10 pm
Hello All,
So I've recently become one of the unfortunate few who get perhaps the ickiest Yervoy side effect: colitis. Without going into too much detail, I've essentially been pooping blood for a month straight and have lost 20 pounds (I started at 150 pounds, so this is a lot to lose). I've had 3 doses of Remicade (infliximab), and am currently at 50 mgs of prednisone (down from 80mgs), and 9mgs of Budesonide. Haven't had a dose of Yervoy in over 6 weeks. Has anyone else experienced this, or does anyone have any advice as to how to stop spending my days and nights in the bathroom. It's kinda cold in there and one can only watch YouTube food videos in a cold bathroom on an iPhone for so long 🙂
Thanks a lot!
Josh
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- February 6, 2015 at 5:38 pm
Josh – Sorry to hear about the side effects… sounds unpleasant to say the least. I am sure someone else can chime in with suggestions. I cannot offer any as I have not been through this. Hope this clears up soon for you.
Kevin
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- February 6, 2015 at 5:38 pm
Josh – Sorry to hear about the side effects… sounds unpleasant to say the least. I am sure someone else can chime in with suggestions. I cannot offer any as I have not been through this. Hope this clears up soon for you.
Kevin
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- February 6, 2015 at 5:38 pm
Josh – Sorry to hear about the side effects… sounds unpleasant to say the least. I am sure someone else can chime in with suggestions. I cannot offer any as I have not been through this. Hope this clears up soon for you.
Kevin
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- February 8, 2015 at 2:37 am
Josh, I had ipi-related colitis (moderate) after 3 infusions. I was able to get it under control with prednisone and budesonide, though just barely (Remicade was ordered at one point). I was weaned off the steroids over about 10 weeks, including a few weeks where I had to increase again. Like you, my primary issue was blood. I don't have any sage advice other than perhaps to wear adult diapers (Depends) as support. I never actually had an accident, but knowing that I had the support provided psychological relief. I understand that Remicade is very effective for colitis, so hopefully you're at the end of the cycle. Keep the faith–this is temporary and your GI tract will return to normal.
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- February 8, 2015 at 2:37 am
Josh, I had ipi-related colitis (moderate) after 3 infusions. I was able to get it under control with prednisone and budesonide, though just barely (Remicade was ordered at one point). I was weaned off the steroids over about 10 weeks, including a few weeks where I had to increase again. Like you, my primary issue was blood. I don't have any sage advice other than perhaps to wear adult diapers (Depends) as support. I never actually had an accident, but knowing that I had the support provided psychological relief. I understand that Remicade is very effective for colitis, so hopefully you're at the end of the cycle. Keep the faith–this is temporary and your GI tract will return to normal.
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- February 8, 2015 at 2:37 am
Josh, I had ipi-related colitis (moderate) after 3 infusions. I was able to get it under control with prednisone and budesonide, though just barely (Remicade was ordered at one point). I was weaned off the steroids over about 10 weeks, including a few weeks where I had to increase again. Like you, my primary issue was blood. I don't have any sage advice other than perhaps to wear adult diapers (Depends) as support. I never actually had an accident, but knowing that I had the support provided psychological relief. I understand that Remicade is very effective for colitis, so hopefully you're at the end of the cycle. Keep the faith–this is temporary and your GI tract will return to normal.
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- February 8, 2015 at 11:44 pm
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- February 8, 2015 at 11:44 pm
I want to share the amazing results with Cannabis oil cancer miracle cure. My wife just recovered from breast cancer just 19 weeks of using it. She have being having this breast cancer on her left side which she have been battling for over 3 years.More importantly, she is no longer having to deal with the embarrassment and annoyance of Chemo, Radiations and those crazy cancer drugs which is been recommended by oncologist nor daily fatigue. If you have been in the situation, you will know what it means to be free indeed.Thanks to Dr. Thomas and Mr. Rick Simpson. Save yourself, and your family members and friends by helping them out with this information for better understanding.Where to order the medication online!!!!!!!!!!!!!!!!!!!!!!!for more help. -
- February 8, 2015 at 11:44 pm
I want to share the amazing results with Cannabis oil cancer miracle cure. My wife just recovered from breast cancer just 19 weeks of using it. She have being having this breast cancer on her left side which she have been battling for over 3 years.More importantly, she is no longer having to deal with the embarrassment and annoyance of Chemo, Radiations and those crazy cancer drugs which is been recommended by oncologist nor daily fatigue. If you have been in the situation, you will know what it means to be free indeed.Thanks to Dr. Thomas and Mr. Rick Simpson. Save yourself, and your family members and friends by helping them out with this information for better understanding.Where to order the medication online!!!!!!!!!!!!!!!!!!!!!!!for more help. -
- February 10, 2015 at 8:13 pm
My husband had this same thing happen after 2 doses of Yervoy and his doctor addmitted him into the hospital for 6 days! How concered is your doctor about this. Our doctor thought this was pretty serious as ( not to scare you) but there has been deaths linked to taking this drug and developing colitis. If this is still happening today you may need to do something more.
Good Luck!
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- February 17, 2015 at 5:11 pm
Sorry about the delay in responding; password wasn't working. I'm in clinical trial E1609 arm C 3 mg ipilimumab/Kg body weight. Long story shortened. After 2 infusions, treatment was stopped. Never resumed. I was hospitalized for 3 1/2 weeks [most of October 2013] with severe colitis, massive bleeding, the whole deal. I received 9 units of blood the first week I was was in the intermediate critical care unit. Massive doses of prednisone, 120 mg/day intravenous, resulted in orthostatic hypotension that had me totally bed ridden. I had 2 infusions of inflexiumab [Remicade] which stopped the bleeding. For a while a total colonectomy had been considered. After I proved that I could tolerate solid food, I was discharged. My gastroenterologist insisted that I reduce the prednisone very gradually, 5 mg every 5 days. I was on a colitis diet for a year as a precaution. The endocrinologist had me continue the prednisone 5 mg/day for 6 months until she felt that adrenal insufficiency was not an issue. She and the oncologist are still ordering tests (ACTH, etc..) to confirm that is still the case. (I'm in a clinical trial and that issue has to be resolved.) I was eligible for the trial because after surgery 06/06/13 (total left paritodectomy and modified radical dissection of lymph nodes on the left side of neck) I was NED. I still am [NED].
I don't know what your exact situation is .You are in my thoughts. Please be proactive in regards to your treatment. I hope by this time everything with your situation has been positively resolved.
In response the a previous reply there were reported deaths in arm A of the clinical trial 10 mg ipilimumab/ Kg body weight. I believe that part of the trial has been suspended.
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- February 17, 2015 at 5:11 pm
Sorry about the delay in responding; password wasn't working. I'm in clinical trial E1609 arm C 3 mg ipilimumab/Kg body weight. Long story shortened. After 2 infusions, treatment was stopped. Never resumed. I was hospitalized for 3 1/2 weeks [most of October 2013] with severe colitis, massive bleeding, the whole deal. I received 9 units of blood the first week I was was in the intermediate critical care unit. Massive doses of prednisone, 120 mg/day intravenous, resulted in orthostatic hypotension that had me totally bed ridden. I had 2 infusions of inflexiumab [Remicade] which stopped the bleeding. For a while a total colonectomy had been considered. After I proved that I could tolerate solid food, I was discharged. My gastroenterologist insisted that I reduce the prednisone very gradually, 5 mg every 5 days. I was on a colitis diet for a year as a precaution. The endocrinologist had me continue the prednisone 5 mg/day for 6 months until she felt that adrenal insufficiency was not an issue. She and the oncologist are still ordering tests (ACTH, etc..) to confirm that is still the case. (I'm in a clinical trial and that issue has to be resolved.) I was eligible for the trial because after surgery 06/06/13 (total left paritodectomy and modified radical dissection of lymph nodes on the left side of neck) I was NED. I still am [NED].
I don't know what your exact situation is .You are in my thoughts. Please be proactive in regards to your treatment. I hope by this time everything with your situation has been positively resolved.
In response the a previous reply there were reported deaths in arm A of the clinical trial 10 mg ipilimumab/ Kg body weight. I believe that part of the trial has been suspended.
-
- February 17, 2015 at 5:11 pm
Sorry about the delay in responding; password wasn't working. I'm in clinical trial E1609 arm C 3 mg ipilimumab/Kg body weight. Long story shortened. After 2 infusions, treatment was stopped. Never resumed. I was hospitalized for 3 1/2 weeks [most of October 2013] with severe colitis, massive bleeding, the whole deal. I received 9 units of blood the first week I was was in the intermediate critical care unit. Massive doses of prednisone, 120 mg/day intravenous, resulted in orthostatic hypotension that had me totally bed ridden. I had 2 infusions of inflexiumab [Remicade] which stopped the bleeding. For a while a total colonectomy had been considered. After I proved that I could tolerate solid food, I was discharged. My gastroenterologist insisted that I reduce the prednisone very gradually, 5 mg every 5 days. I was on a colitis diet for a year as a precaution. The endocrinologist had me continue the prednisone 5 mg/day for 6 months until she felt that adrenal insufficiency was not an issue. She and the oncologist are still ordering tests (ACTH, etc..) to confirm that is still the case. (I'm in a clinical trial and that issue has to be resolved.) I was eligible for the trial because after surgery 06/06/13 (total left paritodectomy and modified radical dissection of lymph nodes on the left side of neck) I was NED. I still am [NED].
I don't know what your exact situation is .You are in my thoughts. Please be proactive in regards to your treatment. I hope by this time everything with your situation has been positively resolved.
In response the a previous reply there were reported deaths in arm A of the clinical trial 10 mg ipilimumab/ Kg body weight. I believe that part of the trial has been suspended.
-
- February 10, 2015 at 8:13 pm
My husband had this same thing happen after 2 doses of Yervoy and his doctor addmitted him into the hospital for 6 days! How concered is your doctor about this. Our doctor thought this was pretty serious as ( not to scare you) but there has been deaths linked to taking this drug and developing colitis. If this is still happening today you may need to do something more.
Good Luck!
-
- February 10, 2015 at 8:13 pm
My husband had this same thing happen after 2 doses of Yervoy and his doctor addmitted him into the hospital for 6 days! How concered is your doctor about this. Our doctor thought this was pretty serious as ( not to scare you) but there has been deaths linked to taking this drug and developing colitis. If this is still happening today you may need to do something more.
Good Luck!
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