› Forums › General Melanoma Community › Yervoy, diarrhea & weight loss
- This topic has 18 replies, 4 voices, and was last updated 12 years, 8 months ago by
PlantLady.
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- August 22, 2011 at 11:45 pm
My husband Ron started Yervoy in June 2011, and had a second infusion in July. He is stage IV MM w/no primary. His Yervoy treatment was suspended in August due to the side effects.
He lost weight right along, with the worst weekly weight loss being 8 lb, and another bad week w/ a 6 lb. loss. He had diarrhea about 6 or 7 times a day, loss of appetite, weakness, overwhelming fatigue. He's gone from 190 to 160 lbs. He's developed drop foot, and has lost so much muscle, including loss of his voice due to muscle weakness in the vocal chords.
My husband Ron started Yervoy in June 2011, and had a second infusion in July. He is stage IV MM w/no primary. His Yervoy treatment was suspended in August due to the side effects.
He lost weight right along, with the worst weekly weight loss being 8 lb, and another bad week w/ a 6 lb. loss. He had diarrhea about 6 or 7 times a day, loss of appetite, weakness, overwhelming fatigue. He's gone from 190 to 160 lbs. He's developed drop foot, and has lost so much muscle, including loss of his voice due to muscle weakness in the vocal chords.
He was put on steroids for the diarrhea, and takes Imodium twice a day, and still has 4-6 episodes of diarrhea per day, but his appetite has returned.
It is rough seeing him get so thin and frail looking! He hasn't had an infusion since July 13.
He had a PET scan yesterday, and we will go to the University of Michigan Wed to find out what our future holds.
Has anyone else out there on Ipi suffered from D and been put on steroids for it?
Has anybody else had muscle wasting, and what have you done for it?
The doctor says the diarrhea and weight loss could be a positive indication that he is responding to Yervoy. We'll see in 2 days.
CJ – Ron's wife
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- August 23, 2011 at 12:45 am
Look up posts from Karen from NY. Her Dr put her on a special steroid that only works in the gut. She has posted that she was told no immodium. Do you know if your husbands Dr has experience with Yervoy? I'm glad that his appetite has returned but is he eating bland food because spicy food might be causing more issues.
I hope Ron gets some answers.
Linda
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- August 23, 2011 at 1:22 pm
I know that the doctor didn't want Ron to stay on Lomotil for long – it was only for a couple of critical days – and that he wants him to limit his use of Imodium, which he uses twice a day. Do you know why doctors are limiting it's use, by the way? Just curious.
His doctor, Dr. Lao, is a specialist in Melanoma/Skin Cancer, and is familiar with Yervoy, having had other patients use it. At the recent convention of oncologists in Chicago, this doctor was the head (or chair?) of the melanoma panel and all presenters passed their papers for presentation through him and that committee (my paraphrasing, my understanding of what I was told). So, he's up-to-date, I would think.
I'll ask about the steroid "for the gut".
He is not eating bland food. Not spicy food. Well-seasoned food. Meat, fish, veg. Diet and nutrition is a whole 'nother area of interest, suitable for it's own thread.
I can't find the Karen from NY post, but I'll keep searching…..
Thanks.
CJ
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- August 23, 2011 at 1:22 pm
I know that the doctor didn't want Ron to stay on Lomotil for long – it was only for a couple of critical days – and that he wants him to limit his use of Imodium, which he uses twice a day. Do you know why doctors are limiting it's use, by the way? Just curious.
His doctor, Dr. Lao, is a specialist in Melanoma/Skin Cancer, and is familiar with Yervoy, having had other patients use it. At the recent convention of oncologists in Chicago, this doctor was the head (or chair?) of the melanoma panel and all presenters passed their papers for presentation through him and that committee (my paraphrasing, my understanding of what I was told). So, he's up-to-date, I would think.
I'll ask about the steroid "for the gut".
He is not eating bland food. Not spicy food. Well-seasoned food. Meat, fish, veg. Diet and nutrition is a whole 'nother area of interest, suitable for it's own thread.
I can't find the Karen from NY post, but I'll keep searching…..
Thanks.
CJ
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- August 23, 2011 at 12:45 am
Look up posts from Karen from NY. Her Dr put her on a special steroid that only works in the gut. She has posted that she was told no immodium. Do you know if your husbands Dr has experience with Yervoy? I'm glad that his appetite has returned but is he eating bland food because spicy food might be causing more issues.
I hope Ron gets some answers.
Linda
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- August 23, 2011 at 2:05 am
Hi CJ,
My father started Yervoy in April and he right away started having Diarrhea after the first infusion. He had it about 7 to 8 times a day just like you and he was put on a steriod to help it. He actually got Colitis from the Yervoy so they had to stop his treatments for a few weeks but then started right up after the diarrhea got under control. They told him not to take immodium b/c of the Colitis. The doctor thought this was a positive thing but we have yet to get a full CT scan so we're not sure exactly how he is reacting to it. Good luck at your next appointment!
Deidre (Father Stage IV)
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- August 23, 2011 at 4:24 pm
Hi CCJ, yup I have experience. If you check all the literature, 7 to 8 times a day is unacceptable, and if the steriod isn't stopping it, he needs another.
When I went through the same thing, I was given Endocort EC (available in generic, which works just as well) 25mg, 3 capsules in the a.m. with water. Within a day, it was down to 1 movement every day or even every 2 days. This is very important and must be addressed. I know Dr. Wolchuk said no immodium after the first 1 or 2 movements
Dr. Wolchuk is @ Sloan & he's one of the researchers/developers of Yervoy. When I told him that some people on the boards were using immodium, he said that clearly their doctors weren't reading all of the prescribing literature. He's over in Australia right now…Yervoy was just approved there and he's helping to train docs/hospitals on its use.
Hope this helps!
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- August 23, 2011 at 4:24 pm
Hi CCJ, yup I have experience. If you check all the literature, 7 to 8 times a day is unacceptable, and if the steriod isn't stopping it, he needs another.
When I went through the same thing, I was given Endocort EC (available in generic, which works just as well) 25mg, 3 capsules in the a.m. with water. Within a day, it was down to 1 movement every day or even every 2 days. This is very important and must be addressed. I know Dr. Wolchuk said no immodium after the first 1 or 2 movements
Dr. Wolchuk is @ Sloan & he's one of the researchers/developers of Yervoy. When I told him that some people on the boards were using immodium, he said that clearly their doctors weren't reading all of the prescribing literature. He's over in Australia right now…Yervoy was just approved there and he's helping to train docs/hospitals on its use.
Hope this helps!
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- August 24, 2011 at 2:14 am
CJ, forgot to tell you that I was put on a bland diet too, and that helped a lot.
I cut & pasted the below for you, it's on Yervoy.com, package insert.
• Permanently discontinue YERVOY for any of the following:
o Persistent moderate adverse reactions or inability to reduce corticosteroiddose to 7.5 mg prednisone or equivalent per day.o Failure to complete full treatment course within 16 weeks from administrationof first dose.o Severe or life-threatening adverse reactions, including any of the following:n Colitis with abdominal pain, fever, ileus, or peritoneal signs; increasein stool frequency (7 or more over baseline), stool incontinence, needfor intravenous hydration for more than 24 hours, gastrointestinalhemorrhage, and gastrointestinal perforationthe bold is mine.
take care,
karen
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- September 3, 2011 at 2:27 pm
He was not helped by the bland diet. It made no difference.
As I said before, he was taken off Yervoy treatment because of the diarrhea, neuropathy, etc. He only had 1 or 2 days where he had 7 movements, mostly he was at 6, just hovering at the borderline and was put on Dexamethasone.
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- September 3, 2011 at 2:27 pm
He was not helped by the bland diet. It made no difference.
As I said before, he was taken off Yervoy treatment because of the diarrhea, neuropathy, etc. He only had 1 or 2 days where he had 7 movements, mostly he was at 6, just hovering at the borderline and was put on Dexamethasone.
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- August 24, 2011 at 2:14 am
CJ, forgot to tell you that I was put on a bland diet too, and that helped a lot.
I cut & pasted the below for you, it's on Yervoy.com, package insert.
• Permanently discontinue YERVOY for any of the following:
o Persistent moderate adverse reactions or inability to reduce corticosteroiddose to 7.5 mg prednisone or equivalent per day.o Failure to complete full treatment course within 16 weeks from administrationof first dose.o Severe or life-threatening adverse reactions, including any of the following:n Colitis with abdominal pain, fever, ileus, or peritoneal signs; increasein stool frequency (7 or more over baseline), stool incontinence, needfor intravenous hydration for more than 24 hours, gastrointestinalhemorrhage, and gastrointestinal perforationthe bold is mine.
take care,
karen
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- August 23, 2011 at 2:05 am
Hi CJ,
My father started Yervoy in April and he right away started having Diarrhea after the first infusion. He had it about 7 to 8 times a day just like you and he was put on a steriod to help it. He actually got Colitis from the Yervoy so they had to stop his treatments for a few weeks but then started right up after the diarrhea got under control. They told him not to take immodium b/c of the Colitis. The doctor thought this was a positive thing but we have yet to get a full CT scan so we're not sure exactly how he is reacting to it. Good luck at your next appointment!
Deidre (Father Stage IV)
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- August 30, 2011 at 2:25 pm
Hi CJ,
Was reading your blog post again and noticed you said the doctors said his muscle loss was from the Yervoy treatment working. Is this true? Can you give more information on this? My dad started Yervoy in April 2011 and has lost a lot of muscle in the last few months. He has been particularly concerned with this the past few days. His doctor has said the treatment is working and has helped him so far.
Deidre (Father Stage IV)
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- August 30, 2011 at 2:25 pm
Hi CJ,
Was reading your blog post again and noticed you said the doctors said his muscle loss was from the Yervoy treatment working. Is this true? Can you give more information on this? My dad started Yervoy in April 2011 and has lost a lot of muscle in the last few months. He has been particularly concerned with this the past few days. His doctor has said the treatment is working and has helped him so far.
Deidre (Father Stage IV)
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