› Forums › General Melanoma Community › GI side effects with Yervoy
- This topic has 33 replies, 7 voices, and was last updated 13 years, 3 months ago by
kylez.
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- January 30, 2012 at 10:28 pm
Hi all –
In between my first and second treatments I developed really bad colitis (intestinal inflammation that makes me look like I'm pregnant). Four weeks after my last infusion and I'm still the size of a house!
I'm wondering if anyone treated with Yervoy had a similar experience, and, if so, how long it lasted. I know every person reacts to the drug differently, but any insight would help.
Thanks!
Hi all –
In between my first and second treatments I developed really bad colitis (intestinal inflammation that makes me look like I'm pregnant). Four weeks after my last infusion and I'm still the size of a house!
I'm wondering if anyone treated with Yervoy had a similar experience, and, if so, how long it lasted. I know every person reacts to the drug differently, but any insight would help.
Thanks!
- Replies
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- January 31, 2012 at 4:55 pm
Hi, Just wondering what your doctor (oncologist) has to say about your colitis?
My doctor gave me his cell phone number with instructions to call him with any
problems , especially colitis.
Best Wishes,
Gene (Stage IV)
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- January 31, 2012 at 5:46 pm
HI Gene –
Thank you for your response. My doctor said the inflammation is a bi-product of the Yervoy and has had patients who have experienced this before. Because of how the drug works, she unfortunatley could not provide any insight as to how long the colitis might persist, which is why I'm reaching out to the community.
I'm taking a low-dose of steroids to help with the inflammation, but it hasn't solved the problem. I'm curious as to how long your colitis lasted and if anything helped.
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- January 31, 2012 at 5:46 pm
HI Gene –
Thank you for your response. My doctor said the inflammation is a bi-product of the Yervoy and has had patients who have experienced this before. Because of how the drug works, she unfortunatley could not provide any insight as to how long the colitis might persist, which is why I'm reaching out to the community.
I'm taking a low-dose of steroids to help with the inflammation, but it hasn't solved the problem. I'm curious as to how long your colitis lasted and if anything helped.
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- January 31, 2012 at 5:46 pm
HI Gene –
Thank you for your response. My doctor said the inflammation is a bi-product of the Yervoy and has had patients who have experienced this before. Because of how the drug works, she unfortunatley could not provide any insight as to how long the colitis might persist, which is why I'm reaching out to the community.
I'm taking a low-dose of steroids to help with the inflammation, but it hasn't solved the problem. I'm curious as to how long your colitis lasted and if anything helped.
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- February 1, 2012 at 12:26 am
My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.
Hang in there I’m sure they can fix us!
Nancy
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- February 1, 2012 at 12:26 am
My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.
Hang in there I’m sure they can fix us!
Nancy
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- February 1, 2012 at 12:26 am
My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.
Hang in there I’m sure they can fix us!
Nancy
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- February 1, 2012 at 12:27 am
My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.
Hang in there I’m sure they can fix us!
Nancy
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- February 1, 2012 at 12:27 am
My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.
Hang in there I’m sure they can fix us!
Nancy
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- February 1, 2012 at 2:19 am
Nancy –
Please take what I'm about to say with a grain of salt…
I'm not trying to play doctor, but if your liver, thyroid, and blood work are normal I would try and have your next treatment. My colitis didn't get better or worse as I continued with my treatments. I spoke to my doctor about it because I was concerned that the colitis may be damaging my intestines and have been told that people live with colitis for years and that it's OK from a safety stand point and will one day subside.
Granted, every patient is different, but if you can have you treatment I say go for it! The side effects will come and go, and as we're finding out this drug takes us on a roller coaster ride with them.
Congrats on the scan! What your scan showed is not normal. This drug will latch on to anything it thinks is cancer and blow it up like a balloon (it's the inflammatory nature of the t-cells attacking). I'm having my first post-treatment exam next week and am curious to see what this drug did. I was also told that the first scans can show some funky stuff so I'm expecting the worst and hoping for the best.
Stay strong 🙂
Lauren
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- February 1, 2012 at 2:19 am
Nancy –
Please take what I'm about to say with a grain of salt…
I'm not trying to play doctor, but if your liver, thyroid, and blood work are normal I would try and have your next treatment. My colitis didn't get better or worse as I continued with my treatments. I spoke to my doctor about it because I was concerned that the colitis may be damaging my intestines and have been told that people live with colitis for years and that it's OK from a safety stand point and will one day subside.
Granted, every patient is different, but if you can have you treatment I say go for it! The side effects will come and go, and as we're finding out this drug takes us on a roller coaster ride with them.
Congrats on the scan! What your scan showed is not normal. This drug will latch on to anything it thinks is cancer and blow it up like a balloon (it's the inflammatory nature of the t-cells attacking). I'm having my first post-treatment exam next week and am curious to see what this drug did. I was also told that the first scans can show some funky stuff so I'm expecting the worst and hoping for the best.
Stay strong 🙂
Lauren
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- February 1, 2012 at 2:19 am
Nancy –
Please take what I'm about to say with a grain of salt…
I'm not trying to play doctor, but if your liver, thyroid, and blood work are normal I would try and have your next treatment. My colitis didn't get better or worse as I continued with my treatments. I spoke to my doctor about it because I was concerned that the colitis may be damaging my intestines and have been told that people live with colitis for years and that it's OK from a safety stand point and will one day subside.
Granted, every patient is different, but if you can have you treatment I say go for it! The side effects will come and go, and as we're finding out this drug takes us on a roller coaster ride with them.
Congrats on the scan! What your scan showed is not normal. This drug will latch on to anything it thinks is cancer and blow it up like a balloon (it's the inflammatory nature of the t-cells attacking). I'm having my first post-treatment exam next week and am curious to see what this drug did. I was also told that the first scans can show some funky stuff so I'm expecting the worst and hoping for the best.
Stay strong 🙂
Lauren
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- February 1, 2012 at 12:27 am
My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.
Hang in there I’m sure they can fix us!
Nancy
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- February 1, 2012 at 12:41 am
I guess that makes my rash seem not so bad though its driving me nuts. Someone opined that he thinks that means the med is working. Sure hope so! I've had no other side effects. Best wishes.
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- February 3, 2012 at 5:17 am
This really shows me that every ONC is different. My ONC stressed the importance of informing her of Colitis. She said it was a deal breaker for me. If I did develope colitis I would be put on steroids and taken off the Yervoy.
Rona
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- February 3, 2012 at 6:31 am
My Oncs read me the riot act on colitis with IPI. They had me keep track of all GI tract activity on a daily basis for 3 months.
Her doctor at NYU is listed as a melanoma specialist at the Aim at Melanoma "Find the Right Doctor" web page, http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html, and NYU is listed as an NCI-designated cancer center, http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html#NY. So I hope she's in good hands there???
It would make me nervous.
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- February 3, 2012 at 6:31 am
My Oncs read me the riot act on colitis with IPI. They had me keep track of all GI tract activity on a daily basis for 3 months.
Her doctor at NYU is listed as a melanoma specialist at the Aim at Melanoma "Find the Right Doctor" web page, http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html, and NYU is listed as an NCI-designated cancer center, http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html#NY. So I hope she's in good hands there???
It would make me nervous.
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- February 3, 2012 at 6:31 am
My Oncs read me the riot act on colitis with IPI. They had me keep track of all GI tract activity on a daily basis for 3 months.
Her doctor at NYU is listed as a melanoma specialist at the Aim at Melanoma "Find the Right Doctor" web page, http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html, and NYU is listed as an NCI-designated cancer center, http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html#NY. So I hope she's in good hands there???
It would make me nervous.
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