› Forums › General Melanoma Community › Yervoy, then severe stomach pain, please help!
- This topic has 36 replies, 5 voices, and was last updated 11 years, 8 months ago by
NYKaren.
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- August 29, 2012 at 12:42 am
Im looking for some help or advice…
Im looking for some help or advice…
My brother went through IL2 in February, and then four dosages of Yervoy, ending in June. The scan had the tumors shrinking. Then in July he got headaches. They did an MRI and they found out that his pituitary gland was swollen, so they gave him pregnazone. The headaches went away, but then he got really bad stomachaches. He has been in and out of the hospital now, not able to work, has lost 30 lbs in 4 weeks, and if he eats he either gets diarrhea or throws up. He had a semi colonoscopy a week ago and they found nothing, and he goes in for a full one tomorrow.
During the Cancer treatments he never got sick, he never looked sick. Now he looks like a sick patient. He is only 37 years old and it kills me to see him so thin. He cant even think about the Cancer right now, he feels like he is dying, and is spending everyday toppled over in pain.
Anyone know what could possibly be going on?? The doctors cant seem to figure it out!
Thank you for any help!
- Replies
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- August 29, 2012 at 1:10 am
Yervoy side effects can take 6 months to present themselves. Stomach issues like that are the most common side effect. He probably needs a steroid to settle things down. Is he with a melanoma specialist? With Yervoy, you need a specialist who knows how to handle the side effects of the drug. -
- August 29, 2012 at 1:10 am
Yervoy side effects can take 6 months to present themselves. Stomach issues like that are the most common side effect. He probably needs a steroid to settle things down. Is he with a melanoma specialist? With Yervoy, you need a specialist who knows how to handle the side effects of the drug.-
- August 29, 2012 at 1:15 am
He is working with his oncologist, but he recommended a GI doctor. I am so scared. When you look up the side effects the first is what he is having and it says it can be fatal. Can it really be??
The doctors put him on a steriod, 4 weeks ago, but it hasnt helped. He cant eat. He has lost 30 lbs. He can work, he cant walk much, he has no energy…..
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- August 29, 2012 at 1:32 am
From other's experiences, it's possible not all steroids are equal for treating Yervoy-induced colitis (if that is what he had). What specific steroid was he given, if you know? And, was it his oncologist that prescribed it?
4 weeks seems like a very long time to be having that particular, well known, serious Yervoy symptom and not get any relief.
Yes, the colitis side effect can be very serious and life threatening, per my own oncologist's talk with me before I started Yervoy.
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- August 29, 2012 at 1:32 am
From other's experiences, it's possible not all steroids are equal for treating Yervoy-induced colitis (if that is what he had). What specific steroid was he given, if you know? And, was it his oncologist that prescribed it?
4 weeks seems like a very long time to be having that particular, well known, serious Yervoy symptom and not get any relief.
Yes, the colitis side effect can be very serious and life threatening, per my own oncologist's talk with me before I started Yervoy.
-
- August 29, 2012 at 1:32 am
From other's experiences, it's possible not all steroids are equal for treating Yervoy-induced colitis (if that is what he had). What specific steroid was he given, if you know? And, was it his oncologist that prescribed it?
4 weeks seems like a very long time to be having that particular, well known, serious Yervoy symptom and not get any relief.
Yes, the colitis side effect can be very serious and life threatening, per my own oncologist's talk with me before I started Yervoy.
-
- August 29, 2012 at 1:39 am
They gave him prednisone. But I dont think the doctor is treating it as serious as it is. My brother cant eat, he is in pain, he throws up, and has diarrhea everyday. He has lost 30lbs in 4 weeks.
Do you know what drug he should be on? Thank you for your help!
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- August 29, 2012 at 1:39 am
They gave him prednisone. But I dont think the doctor is treating it as serious as it is. My brother cant eat, he is in pain, he throws up, and has diarrhea everyday. He has lost 30lbs in 4 weeks.
Do you know what drug he should be on? Thank you for your help!
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- August 29, 2012 at 2:01 am
NYKaren has written about her good experiences with, I believe, Endocort (a steroid) prescribed to her by Dr. Jedd Wolchuk at Sloan Kettering. I think I've seen others that may have received prednisone (or some other steroid) intravenously, when they got as serious as it sounds like your brother is expereincing.
Roxy1453 is another person here who's been through serious colitis issues.
Yes, my oncologist warned me about how severe the colitis side effect in particlar is — the possibible fatal side effect was mentioned by him to me — he wanted to know immediately if anything was abnormal in my stools or colitis-wise.
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- August 29, 2012 at 2:01 am
NYKaren has written about her good experiences with, I believe, Endocort (a steroid) prescribed to her by Dr. Jedd Wolchuk at Sloan Kettering. I think I've seen others that may have received prednisone (or some other steroid) intravenously, when they got as serious as it sounds like your brother is expereincing.
Roxy1453 is another person here who's been through serious colitis issues.
Yes, my oncologist warned me about how severe the colitis side effect in particlar is — the possibible fatal side effect was mentioned by him to me — he wanted to know immediately if anything was abnormal in my stools or colitis-wise.
-
- August 29, 2012 at 2:01 am
NYKaren has written about her good experiences with, I believe, Endocort (a steroid) prescribed to her by Dr. Jedd Wolchuk at Sloan Kettering. I think I've seen others that may have received prednisone (or some other steroid) intravenously, when they got as serious as it sounds like your brother is expereincing.
Roxy1453 is another person here who's been through serious colitis issues.
Yes, my oncologist warned me about how severe the colitis side effect in particlar is — the possibible fatal side effect was mentioned by him to me — he wanted to know immediately if anything was abnormal in my stools or colitis-wise.
-
- August 29, 2012 at 1:39 am
They gave him prednisone. But I dont think the doctor is treating it as serious as it is. My brother cant eat, he is in pain, he throws up, and has diarrhea everyday. He has lost 30lbs in 4 weeks.
Do you know what drug he should be on? Thank you for your help!
-
- August 29, 2012 at 1:15 am
He is working with his oncologist, but he recommended a GI doctor. I am so scared. When you look up the side effects the first is what he is having and it says it can be fatal. Can it really be??
The doctors put him on a steriod, 4 weeks ago, but it hasnt helped. He cant eat. He has lost 30 lbs. He can work, he cant walk much, he has no energy…..
-
- August 29, 2012 at 1:15 am
He is working with his oncologist, but he recommended a GI doctor. I am so scared. When you look up the side effects the first is what he is having and it says it can be fatal. Can it really be??
The doctors put him on a steriod, 4 weeks ago, but it hasnt helped. He cant eat. He has lost 30 lbs. He can work, he cant walk much, he has no energy…..
-
- August 29, 2012 at 1:10 am
Yervoy side effects can take 6 months to present themselves. Stomach issues like that are the most common side effect. He probably needs a steroid to settle things down. Is he with a melanoma specialist? With Yervoy, you need a specialist who knows how to handle the side effects of the drug. -
- August 29, 2012 at 3:04 am
Gastric problems are well known and rough with Yervoy. A Friend almost died from them. She wound up spending two of three months in the hospital for care for the side effects after going on Yervoy.. The last I heard the side effects were finally cleared and the melanoma tumors were shrinking.!
IF your Onc is not extremely experienced with treating Yervoy side effects, request that they get in contact with the earlier Oncologists that conducted the clinical trials.
-
- August 29, 2012 at 3:04 am
Gastric problems are well known and rough with Yervoy. A Friend almost died from them. She wound up spending two of three months in the hospital for care for the side effects after going on Yervoy.. The last I heard the side effects were finally cleared and the melanoma tumors were shrinking.!
IF your Onc is not extremely experienced with treating Yervoy side effects, request that they get in contact with the earlier Oncologists that conducted the clinical trials.
-
- August 29, 2012 at 5:16 pm
Hi there,
You need to ask the doctor ASAP about Remicade. I don't know about the vomiting, but for ipi induced colitis, it is the ONLY thing that worked. I was so sick I couldn't walk up more than 2 stairs and was hospitalized twice. The first infusion of Remicade (it lasts about 1-3 hours) didn't do much and I was so disappointed, but the second dose was a miracle…the colitis vanished within 2 days. I know that Dr. Wolchok often speaks with other doctors not so familiar with managing the side effects of Yervoy, and he definately was in on the earliy trials.
Also, after being treated with steroids for the colitis, my adrenal glands shut down. So, I had to resume steroids at a lower dose until they kicked in again. I was very lucky that it was temporary. One thing that my endocronologist knew for certain was that Endocort was NOT good for adrenal glands to start working again. I feel very lucky to be at Sloan Kettering because every doctor knows what the other is doing and I am treated by an entire team.
I hope this helps,
karen
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- August 29, 2012 at 5:16 pm
Hi there,
You need to ask the doctor ASAP about Remicade. I don't know about the vomiting, but for ipi induced colitis, it is the ONLY thing that worked. I was so sick I couldn't walk up more than 2 stairs and was hospitalized twice. The first infusion of Remicade (it lasts about 1-3 hours) didn't do much and I was so disappointed, but the second dose was a miracle…the colitis vanished within 2 days. I know that Dr. Wolchok often speaks with other doctors not so familiar with managing the side effects of Yervoy, and he definately was in on the earliy trials.
Also, after being treated with steroids for the colitis, my adrenal glands shut down. So, I had to resume steroids at a lower dose until they kicked in again. I was very lucky that it was temporary. One thing that my endocronologist knew for certain was that Endocort was NOT good for adrenal glands to start working again. I feel very lucky to be at Sloan Kettering because every doctor knows what the other is doing and I am treated by an entire team.
I hope this helps,
karen
-
- August 29, 2012 at 5:16 pm
Hi there,
You need to ask the doctor ASAP about Remicade. I don't know about the vomiting, but for ipi induced colitis, it is the ONLY thing that worked. I was so sick I couldn't walk up more than 2 stairs and was hospitalized twice. The first infusion of Remicade (it lasts about 1-3 hours) didn't do much and I was so disappointed, but the second dose was a miracle…the colitis vanished within 2 days. I know that Dr. Wolchok often speaks with other doctors not so familiar with managing the side effects of Yervoy, and he definately was in on the earliy trials.
Also, after being treated with steroids for the colitis, my adrenal glands shut down. So, I had to resume steroids at a lower dose until they kicked in again. I was very lucky that it was temporary. One thing that my endocronologist knew for certain was that Endocort was NOT good for adrenal glands to start working again. I feel very lucky to be at Sloan Kettering because every doctor knows what the other is doing and I am treated by an entire team.
I hope this helps,
karen
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- August 29, 2012 at 5:21 pm
forgot to mention: Kyle is right, Endocort is a great first-line drug against ipi-induced diarrhea, but it doesn't do so much for full-blown colitis. He's also right about IV steroids. One of the times I was in the hospital, before the Remicade was given, the only thing that stopped the diarrhea was a large dose of IV steroids.
I can't agree enough that your doc needs to be in touch w/a doc who is very experienced w/Yervoy and its side-effects.
all the best,
karen
-
- August 29, 2012 at 5:21 pm
forgot to mention: Kyle is right, Endocort is a great first-line drug against ipi-induced diarrhea, but it doesn't do so much for full-blown colitis. He's also right about IV steroids. One of the times I was in the hospital, before the Remicade was given, the only thing that stopped the diarrhea was a large dose of IV steroids.
I can't agree enough that your doc needs to be in touch w/a doc who is very experienced w/Yervoy and its side-effects.
all the best,
karen
-
- August 29, 2012 at 9:41 pm
Ok, so he went in for his full colonoscopy today and he does have colitis! After suffering for 4 weeks, and losing 30lbs, the doctor says, "Well, you didnt have the symptoms in the usual order, usually its a stomachache then diarrhea" I could kill the doctor! 4 weeks of suffering! It's stated on the website as a side effect. My brother insists on staying with the same doctor. (another frustrating thing about this whole ordeal).
So, the doctor told him he couldn't put him on Remecade as that drug would exclude him for another cancer treatment(Anti-PD1), is this TRUE????They put him on a different steroid.I just want him to stop suffering. I fear he is so thin and frail that he will have a hard time fighting the cancer if the Yervoy doesn't work. What symptoms should he look for now? How long until the meds work? Are colitis meds a temporary thing or for the rest of his life?Thank YOU!!! -
- August 29, 2012 at 9:41 pm
Ok, so he went in for his full colonoscopy today and he does have colitis! After suffering for 4 weeks, and losing 30lbs, the doctor says, "Well, you didnt have the symptoms in the usual order, usually its a stomachache then diarrhea" I could kill the doctor! 4 weeks of suffering! It's stated on the website as a side effect. My brother insists on staying with the same doctor. (another frustrating thing about this whole ordeal).
So, the doctor told him he couldn't put him on Remecade as that drug would exclude him for another cancer treatment(Anti-PD1), is this TRUE????They put him on a different steroid.I just want him to stop suffering. I fear he is so thin and frail that he will have a hard time fighting the cancer if the Yervoy doesn't work. What symptoms should he look for now? How long until the meds work? Are colitis meds a temporary thing or for the rest of his life?Thank YOU!!! -
- August 29, 2012 at 9:52 pm
He wouldn’t qualify for a Pd-1 trial anyway…he’s too sick. Plus, most trials need at least 12 weeks post Yervoy to qualify. I really don’t think there are any Pd-1 trials open, anyway. We’ve learned you have to treat what is going on right now, then deal with the possibility of a trial later on. I would get a second opinion for sure. I get the idea of thinking ahead (we like to have a plan B, too), but if you don’t treat this The right way, he could die and it won’t matter if he’d be able qualify for a trial or not. -
- August 29, 2012 at 9:52 pm
He wouldn’t qualify for a Pd-1 trial anyway…he’s too sick. Plus, most trials need at least 12 weeks post Yervoy to qualify. I really don’t think there are any Pd-1 trials open, anyway. We’ve learned you have to treat what is going on right now, then deal with the possibility of a trial later on. I would get a second opinion for sure. I get the idea of thinking ahead (we like to have a plan B, too), but if you don’t treat this The right way, he could die and it won’t matter if he’d be able qualify for a trial or not. -
- August 29, 2012 at 11:37 pm
Prior Remicade use does exclude me from one Pd1 trial… I forgot if it is Merck or BMS. But for me, since 80 mg of prednisone/day didn’t work, Remicade was the only answer. Also, colitis is easily diagnosed by CT scan, what a shame your brother had to go through a colonoscopy!
I’m sorry your brother isn’t open to consulting with another doctor.
I hope he responds to the new steroid.
All the best,
Karen -
- August 29, 2012 at 11:37 pm
Prior Remicade use does exclude me from one Pd1 trial… I forgot if it is Merck or BMS. But for me, since 80 mg of prednisone/day didn’t work, Remicade was the only answer. Also, colitis is easily diagnosed by CT scan, what a shame your brother had to go through a colonoscopy!
I’m sorry your brother isn’t open to consulting with another doctor.
I hope he responds to the new steroid.
All the best,
Karen -
- August 30, 2012 at 12:23 pm
Kelly, to answer your question, no, the steroids aren’t meant to be forever, they’re meant to cure the colitis then be weaned off them. Even on high doses, I couldn’t leave the house without taking immodium or lomotil. The lomotil worked better for me. Only the Remicade provided a cure, then I could taper the steroid.
The previous poster was correct (sorry, on my phone & can’t check who it was), there are virtually no seats available right now for pd1, and even if there were, he’s too sick to qualify. Many of us have difficulty qualifying; the criteria/exclusions are many. We are hoping for new trials to start and for the existing trials to come out w/new cohorts w/easier access.
Also, I hope your brother was told to stick to a very bland diet. I had to call in my bowel movement status to the onc nurse every few days, and if I missed a call, she called me.
Take care,
Karen -
- August 30, 2012 at 12:23 pm
Kelly, to answer your question, no, the steroids aren’t meant to be forever, they’re meant to cure the colitis then be weaned off them. Even on high doses, I couldn’t leave the house without taking immodium or lomotil. The lomotil worked better for me. Only the Remicade provided a cure, then I could taper the steroid.
The previous poster was correct (sorry, on my phone & can’t check who it was), there are virtually no seats available right now for pd1, and even if there were, he’s too sick to qualify. Many of us have difficulty qualifying; the criteria/exclusions are many. We are hoping for new trials to start and for the existing trials to come out w/new cohorts w/easier access.
Also, I hope your brother was told to stick to a very bland diet. I had to call in my bowel movement status to the onc nurse every few days, and if I missed a call, she called me.
Take care,
Karen -
- August 30, 2012 at 12:23 pm
Kelly, to answer your question, no, the steroids aren’t meant to be forever, they’re meant to cure the colitis then be weaned off them. Even on high doses, I couldn’t leave the house without taking immodium or lomotil. The lomotil worked better for me. Only the Remicade provided a cure, then I could taper the steroid.
The previous poster was correct (sorry, on my phone & can’t check who it was), there are virtually no seats available right now for pd1, and even if there were, he’s too sick to qualify. Many of us have difficulty qualifying; the criteria/exclusions are many. We are hoping for new trials to start and for the existing trials to come out w/new cohorts w/easier access.
Also, I hope your brother was told to stick to a very bland diet. I had to call in my bowel movement status to the onc nurse every few days, and if I missed a call, she called me.
Take care,
Karen -
- August 29, 2012 at 11:37 pm
Prior Remicade use does exclude me from one Pd1 trial… I forgot if it is Merck or BMS. But for me, since 80 mg of prednisone/day didn’t work, Remicade was the only answer. Also, colitis is easily diagnosed by CT scan, what a shame your brother had to go through a colonoscopy!
I’m sorry your brother isn’t open to consulting with another doctor.
I hope he responds to the new steroid.
All the best,
Karen -
- August 29, 2012 at 9:52 pm
He wouldn’t qualify for a Pd-1 trial anyway…he’s too sick. Plus, most trials need at least 12 weeks post Yervoy to qualify. I really don’t think there are any Pd-1 trials open, anyway. We’ve learned you have to treat what is going on right now, then deal with the possibility of a trial later on. I would get a second opinion for sure. I get the idea of thinking ahead (we like to have a plan B, too), but if you don’t treat this The right way, he could die and it won’t matter if he’d be able qualify for a trial or not. -
- August 29, 2012 at 9:41 pm
Ok, so he went in for his full colonoscopy today and he does have colitis! After suffering for 4 weeks, and losing 30lbs, the doctor says, "Well, you didnt have the symptoms in the usual order, usually its a stomachache then diarrhea" I could kill the doctor! 4 weeks of suffering! It's stated on the website as a side effect. My brother insists on staying with the same doctor. (another frustrating thing about this whole ordeal).
So, the doctor told him he couldn't put him on Remecade as that drug would exclude him for another cancer treatment(Anti-PD1), is this TRUE????They put him on a different steroid.I just want him to stop suffering. I fear he is so thin and frail that he will have a hard time fighting the cancer if the Yervoy doesn't work. What symptoms should he look for now? How long until the meds work? Are colitis meds a temporary thing or for the rest of his life?Thank YOU!!! -
- August 29, 2012 at 5:21 pm
forgot to mention: Kyle is right, Endocort is a great first-line drug against ipi-induced diarrhea, but it doesn't do so much for full-blown colitis. He's also right about IV steroids. One of the times I was in the hospital, before the Remicade was given, the only thing that stopped the diarrhea was a large dose of IV steroids.
I can't agree enough that your doc needs to be in touch w/a doc who is very experienced w/Yervoy and its side-effects.
all the best,
karen
-
- August 29, 2012 at 3:04 am
Gastric problems are well known and rough with Yervoy. A Friend almost died from them. She wound up spending two of three months in the hospital for care for the side effects after going on Yervoy.. The last I heard the side effects were finally cleared and the melanoma tumors were shrinking.!
IF your Onc is not extremely experienced with treating Yervoy side effects, request that they get in contact with the earlier Oncologists that conducted the clinical trials.
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