› Forums › General Melanoma Community › ipi side effects or “maybe” c. diff or “maybe” colitis???
- This topic has 31 replies, 8 voices, and was last updated 7 years, 1 month ago by
Joannxbuc.
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- October 10, 2016 at 3:07 am
Hello All,
I just wanted to throw out an ongoing issue to the group here. I had my second ipi 10mg dose back on 9/20. Went pretty well. About a week later w/o 9/26th to now, I have been battling a lot of nausea and episodic diarrhea. Quite a bit of diarrhea too. And not everyday, but there are some days that I am having unbelievable amounts of gas and very raunchy at that. I am in daily communication with my providers. On the 29th they brought me in for iv fluids, worried about my dehydration. On the 30th, I started on 80mg of predisone daily and 30mg of a ppi daily as well. Taking imodium but not more than label. Also taking zofram for the nausea per label. In the last week I went in to my clinic five days apart for blood work and everthing is basically good. WBC a little high, but the doctors believe that is due to my treatments more than anything else. They discussed with me about a possible gi infection, specifically c. diff so I was able to provide a stool sample on Friday and I should hear about those results tomorrow sometime. They also discussed sending me in for a colonoscopy.
I'm eating a very bland diet, don't drink alcohol and limit my caffeine to one 12oz can in the morning when I wake up, that's it. Drinking water, gatorade low in sugar, etc. My providers are very concerned about an infection…something appears to be going on???
My third treatment was scheduled for this coming Thursday, the 13th but they have cancelled that as we need to figure my intestines out first. Wondering about colitis??
So I was curious if anyone has any personal experience or knows of someone that may have or possibly going through this like I am and if so, would you you be comfortable in sharing that with me??
Anyway, hope everybody is as good as they can be!!!!!!!!!!
Stacy
- Replies
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- October 10, 2016 at 8:40 am
I have not commented for a while but I had to do so for this one. This was exactly one of my side effects from Ipi – diarrhoea but not colitis and unbelievable amounts of gas. I could control the darrhoea with Immodium.
At one point, about two months after my last dose of Ipi, I had 42 successive days of this side effect and decided I had had enough.
By the way, I had eliminated intolerance of gluten or lactose.
I went to my GP (personal doctor not any of the hospital ones) and we discussed it. He suggested I approach it like Irritated Bowel Syndrome.
I cut back caffeine and that may have helped a little.
I tried taking Colofec MR (Mebeverine hydrochloride) but that did not help.
So I eliminated as much insoluble fibre from my diet as possible. I bought a cold press juicer, jucied my fruits and vegetables and then added back soluble fibre (I use Benefiber but I expect other brands are available).
I also take a probiotic. I take Bio-Kult, but again other are available.
I managed to get it under control. Less gas, No diarrhoea. I was finally able to give up the Immodium.
The bad news is that my gut had never been 'right' since. If I eat insoluble fibre (and possibly some other things but I have not got a handle on that) back comes the uncontrollable gas
I really like onions!
I have found that taking alpha-glalactoside enzyme as I eat anything that has insoluble fibre in it helps. I buy a formulation called Beano but there are others available.
It's been a year now since I made these changes.
Other points you may like to know:
1. I am an complete responder on Ipi with about 1 year NED
2. My anterior pituitary gland stopped functioning on Ipi and has never com back
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- October 10, 2016 at 8:40 am
I have not commented for a while but I had to do so for this one. This was exactly one of my side effects from Ipi – diarrhoea but not colitis and unbelievable amounts of gas. I could control the darrhoea with Immodium.
At one point, about two months after my last dose of Ipi, I had 42 successive days of this side effect and decided I had had enough.
By the way, I had eliminated intolerance of gluten or lactose.
I went to my GP (personal doctor not any of the hospital ones) and we discussed it. He suggested I approach it like Irritated Bowel Syndrome.
I cut back caffeine and that may have helped a little.
I tried taking Colofec MR (Mebeverine hydrochloride) but that did not help.
So I eliminated as much insoluble fibre from my diet as possible. I bought a cold press juicer, jucied my fruits and vegetables and then added back soluble fibre (I use Benefiber but I expect other brands are available).
I also take a probiotic. I take Bio-Kult, but again other are available.
I managed to get it under control. Less gas, No diarrhoea. I was finally able to give up the Immodium.
The bad news is that my gut had never been 'right' since. If I eat insoluble fibre (and possibly some other things but I have not got a handle on that) back comes the uncontrollable gas
I really like onions!
I have found that taking alpha-glalactoside enzyme as I eat anything that has insoluble fibre in it helps. I buy a formulation called Beano but there are others available.
It's been a year now since I made these changes.
Other points you may like to know:
1. I am an complete responder on Ipi with about 1 year NED
2. My anterior pituitary gland stopped functioning on Ipi and has never com back
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- October 10, 2016 at 1:36 pm
Hi Moira,
Did you see the post from Mikers about three of four down. His wife is on ipi and has dreadful nausea and headaches after infusion 2. They have done an MRI and seem to be saying no evidence of pituatary problems- was just wondering- when did yours present in the ipi treatment ? How would you describe the headache pain ? Am assuming the digestive problems cut in at thesame time- was nausea a big issue as well? If it is the pituitary problem sooner they treat the better – as you are only too well aware. Was wondering if you could shine any light for them from a personal experience standpoint.
Hope term is still going well,
Deb
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- October 10, 2016 at 1:36 pm
Hi Moira,
Did you see the post from Mikers about three of four down. His wife is on ipi and has dreadful nausea and headaches after infusion 2. They have done an MRI and seem to be saying no evidence of pituatary problems- was just wondering- when did yours present in the ipi treatment ? How would you describe the headache pain ? Am assuming the digestive problems cut in at thesame time- was nausea a big issue as well? If it is the pituitary problem sooner they treat the better – as you are only too well aware. Was wondering if you could shine any light for them from a personal experience standpoint.
Hope term is still going well,
Deb
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- October 10, 2016 at 1:36 pm
Hi Moira,
Did you see the post from Mikers about three of four down. His wife is on ipi and has dreadful nausea and headaches after infusion 2. They have done an MRI and seem to be saying no evidence of pituatary problems- was just wondering- when did yours present in the ipi treatment ? How would you describe the headache pain ? Am assuming the digestive problems cut in at thesame time- was nausea a big issue as well? If it is the pituitary problem sooner they treat the better – as you are only too well aware. Was wondering if you could shine any light for them from a personal experience standpoint.
Hope term is still going well,
Deb
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- October 10, 2016 at 3:48 pm
My anterior pituitary gland gave out after my fourth infusion of Ipi. It was not diagnosed by an MRI at that time but by a blood test after I could no longer climb stairs.
The headaches were bad but not blinding. It turns out that I have a high tolerance to headache pain. I had no appetite. I remember a little nausea but mostly I did not eat. It turned out that I had lost over 30 lbs but I such terrible fluid retention that it was not obvious. At that stage my gut was behaving very differently. The diarrhoea has stopped! That turned out to be because I had such low levels of thyroxine.
The diarrhoea came back, with the 'ipi rash', two months after my final infusion. It was after that that I had the 42 days of diarrhoea and wind.
-
- October 10, 2016 at 3:48 pm
My anterior pituitary gland gave out after my fourth infusion of Ipi. It was not diagnosed by an MRI at that time but by a blood test after I could no longer climb stairs.
The headaches were bad but not blinding. It turns out that I have a high tolerance to headache pain. I had no appetite. I remember a little nausea but mostly I did not eat. It turned out that I had lost over 30 lbs but I such terrible fluid retention that it was not obvious. At that stage my gut was behaving very differently. The diarrhoea has stopped! That turned out to be because I had such low levels of thyroxine.
The diarrhoea came back, with the 'ipi rash', two months after my final infusion. It was after that that I had the 42 days of diarrhoea and wind.
-
- October 10, 2016 at 3:48 pm
My anterior pituitary gland gave out after my fourth infusion of Ipi. It was not diagnosed by an MRI at that time but by a blood test after I could no longer climb stairs.
The headaches were bad but not blinding. It turns out that I have a high tolerance to headache pain. I had no appetite. I remember a little nausea but mostly I did not eat. It turned out that I had lost over 30 lbs but I such terrible fluid retention that it was not obvious. At that stage my gut was behaving very differently. The diarrhoea has stopped! That turned out to be because I had such low levels of thyroxine.
The diarrhoea came back, with the 'ipi rash', two months after my final infusion. It was after that that I had the 42 days of diarrhoea and wind.
-
- October 10, 2016 at 8:40 am
I have not commented for a while but I had to do so for this one. This was exactly one of my side effects from Ipi – diarrhoea but not colitis and unbelievable amounts of gas. I could control the darrhoea with Immodium.
At one point, about two months after my last dose of Ipi, I had 42 successive days of this side effect and decided I had had enough.
By the way, I had eliminated intolerance of gluten or lactose.
I went to my GP (personal doctor not any of the hospital ones) and we discussed it. He suggested I approach it like Irritated Bowel Syndrome.
I cut back caffeine and that may have helped a little.
I tried taking Colofec MR (Mebeverine hydrochloride) but that did not help.
So I eliminated as much insoluble fibre from my diet as possible. I bought a cold press juicer, jucied my fruits and vegetables and then added back soluble fibre (I use Benefiber but I expect other brands are available).
I also take a probiotic. I take Bio-Kult, but again other are available.
I managed to get it under control. Less gas, No diarrhoea. I was finally able to give up the Immodium.
The bad news is that my gut had never been 'right' since. If I eat insoluble fibre (and possibly some other things but I have not got a handle on that) back comes the uncontrollable gas
I really like onions!
I have found that taking alpha-glalactoside enzyme as I eat anything that has insoluble fibre in it helps. I buy a formulation called Beano but there are others available.
It's been a year now since I made these changes.
Other points you may like to know:
1. I am an complete responder on Ipi with about 1 year NED
2. My anterior pituitary gland stopped functioning on Ipi and has never com back
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- October 10, 2016 at 2:40 pm
Hi Stacy, just thought that this link might help, it features Dr. Micheal Postow talking about Immunotherapy. At about the 17 min mark the video gets into Ipi side effects. Hope it helps!!!!Ed https://www.youtube.com/watch?v=Qd9fCi001n0
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- October 10, 2016 at 2:40 pm
Hi Stacy, just thought that this link might help, it features Dr. Micheal Postow talking about Immunotherapy. At about the 17 min mark the video gets into Ipi side effects. Hope it helps!!!!Ed https://www.youtube.com/watch?v=Qd9fCi001n0
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- October 10, 2016 at 2:40 pm
Hi Stacy, just thought that this link might help, it features Dr. Micheal Postow talking about Immunotherapy. At about the 17 min mark the video gets into Ipi side effects. Hope it helps!!!!Ed https://www.youtube.com/watch?v=Qd9fCi001n0
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- October 10, 2016 at 2:57 pm
GI issues are one of the most common complaints about Ipi. It's good that your doctors are being cautious to check everything, so they don't worsen. The nausea and gas makes me curious as to whether they've checked your amylase and lipase enzymes on blood tests, as your symptoms pretty well describe the difficulty I had when pancreatitis snuck up on me. I had no sharp pain in my back or stomach, but blood lab enzyme levels and my routine CT confirmed that was the problem. As horrific as discussing #2 function sounds, anyone on Ipi, Opdivo, or Pembro can tell you… it becomes a regular topic of conversation. Routine question at the oncology visits…. "How are your bowel movements? Any diarhea?"… welllllllllll… put it this way… for the last 2 years, anything less than 3 times per day and thicker than mashed potatoes would be a surprise. Hope all calms for you soon.
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- October 10, 2016 at 2:57 pm
GI issues are one of the most common complaints about Ipi. It's good that your doctors are being cautious to check everything, so they don't worsen. The nausea and gas makes me curious as to whether they've checked your amylase and lipase enzymes on blood tests, as your symptoms pretty well describe the difficulty I had when pancreatitis snuck up on me. I had no sharp pain in my back or stomach, but blood lab enzyme levels and my routine CT confirmed that was the problem. As horrific as discussing #2 function sounds, anyone on Ipi, Opdivo, or Pembro can tell you… it becomes a regular topic of conversation. Routine question at the oncology visits…. "How are your bowel movements? Any diarhea?"… welllllllllll… put it this way… for the last 2 years, anything less than 3 times per day and thicker than mashed potatoes would be a surprise. Hope all calms for you soon.
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- October 10, 2016 at 2:57 pm
GI issues are one of the most common complaints about Ipi. It's good that your doctors are being cautious to check everything, so they don't worsen. The nausea and gas makes me curious as to whether they've checked your amylase and lipase enzymes on blood tests, as your symptoms pretty well describe the difficulty I had when pancreatitis snuck up on me. I had no sharp pain in my back or stomach, but blood lab enzyme levels and my routine CT confirmed that was the problem. As horrific as discussing #2 function sounds, anyone on Ipi, Opdivo, or Pembro can tell you… it becomes a regular topic of conversation. Routine question at the oncology visits…. "How are your bowel movements? Any diarhea?"… welllllllllll… put it this way… for the last 2 years, anything less than 3 times per day and thicker than mashed potatoes would be a surprise. Hope all calms for you soon.
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- October 10, 2016 at 10:10 pm
Thanks everyone for your responses and support. My stool sample came back negative for C. Diff. After speaking to my medical oncologist, he decided to admit me into the hospital for the next 2-3 days for further testing, etc.
So I'm here. Getting ready for IV fluids. I know that I will have a colonoscopy probably tomorrow. My MO is thinking colitis since C. Diff came back negative, although they are going to ask me for another sample to test for it again. Geeshh!!
And thanks Ed for passing along that video clip…I will take a look at that.
Stacy
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- October 10, 2016 at 10:10 pm
Thanks everyone for your responses and support. My stool sample came back negative for C. Diff. After speaking to my medical oncologist, he decided to admit me into the hospital for the next 2-3 days for further testing, etc.
So I'm here. Getting ready for IV fluids. I know that I will have a colonoscopy probably tomorrow. My MO is thinking colitis since C. Diff came back negative, although they are going to ask me for another sample to test for it again. Geeshh!!
And thanks Ed for passing along that video clip…I will take a look at that.
Stacy
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- October 10, 2016 at 10:10 pm
Thanks everyone for your responses and support. My stool sample came back negative for C. Diff. After speaking to my medical oncologist, he decided to admit me into the hospital for the next 2-3 days for further testing, etc.
So I'm here. Getting ready for IV fluids. I know that I will have a colonoscopy probably tomorrow. My MO is thinking colitis since C. Diff came back negative, although they are going to ask me for another sample to test for it again. Geeshh!!
And thanks Ed for passing along that video clip…I will take a look at that.
Stacy
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- October 12, 2016 at 3:04 am
Hey Stacy so sorry to hear about your intestinal detour! Sometimes it feels like immunotherapy is one step forward and two steps back. It definitely sounds like you’re on the verge of colitis. When I had my Ipi side effects, my symptoms were more nausea/vomiting related but did also have some diarrhea. The GI doc suggested I follow an IBS diet, as Moira suggested, to make it easier on my system as I recovered. I also started steroids to help with the symptoms around that same time. Hope you start to feel better soon!!Lauren
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- October 12, 2016 at 3:04 am
Hey Stacy so sorry to hear about your intestinal detour! Sometimes it feels like immunotherapy is one step forward and two steps back. It definitely sounds like you’re on the verge of colitis. When I had my Ipi side effects, my symptoms were more nausea/vomiting related but did also have some diarrhea. The GI doc suggested I follow an IBS diet, as Moira suggested, to make it easier on my system as I recovered. I also started steroids to help with the symptoms around that same time. Hope you start to feel better soon!!Lauren
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- October 12, 2016 at 3:04 am
Hey Stacy so sorry to hear about your intestinal detour! Sometimes it feels like immunotherapy is one step forward and two steps back. It definitely sounds like you’re on the verge of colitis. When I had my Ipi side effects, my symptoms were more nausea/vomiting related but did also have some diarrhea. The GI doc suggested I follow an IBS diet, as Moira suggested, to make it easier on my system as I recovered. I also started steroids to help with the symptoms around that same time. Hope you start to feel better soon!!Lauren
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- October 13, 2016 at 2:40 pm
Thanks Lauren,
So I'm back home from the hospital. My CT scan came back clear and I have no infection. I was on IV fluids for 48 hours straight. I had a colonoscopy yesterday morning and they told me that I had a lot of inflammation in my colon and intestines, meaning colitis OR possibly due to the Yervoy.
They are keeping me on oral steroids for the inflammation. I woke up today with nausea and two diarrhea's so far. UGGGHH!!!
I have an appointment to see my treating oncologist today at 1pm. We will discuss everything and most likely they will recommend stopping the Yervoy and start plan B which is only Interferon right, for stage 3???
Anyone have ideas and/or suggestions for me?? I have a list of questions for my appointment today but anything else might be helpful.
Thanks,
Stacy
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- October 13, 2016 at 2:40 pm
Thanks Lauren,
So I'm back home from the hospital. My CT scan came back clear and I have no infection. I was on IV fluids for 48 hours straight. I had a colonoscopy yesterday morning and they told me that I had a lot of inflammation in my colon and intestines, meaning colitis OR possibly due to the Yervoy.
They are keeping me on oral steroids for the inflammation. I woke up today with nausea and two diarrhea's so far. UGGGHH!!!
I have an appointment to see my treating oncologist today at 1pm. We will discuss everything and most likely they will recommend stopping the Yervoy and start plan B which is only Interferon right, for stage 3???
Anyone have ideas and/or suggestions for me?? I have a list of questions for my appointment today but anything else might be helpful.
Thanks,
Stacy
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- October 13, 2016 at 3:47 pm
Not everyone has to stop Yervoy completely when something like this comes up. Sometimes the next infusion get pushed back until your symptoms have cleared up and you've weaned off the steroids.
If you do have to stop Yervoy, there is no reason to put yourself through Interferon. Plan B is to observe you closely through scans. You've got some Yervoy in your body, and it's going to continue to do it's thing for a while after the last infusion.
Hope your stomach starts feeling better soon!
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- October 13, 2016 at 3:47 pm
Not everyone has to stop Yervoy completely when something like this comes up. Sometimes the next infusion get pushed back until your symptoms have cleared up and you've weaned off the steroids.
If you do have to stop Yervoy, there is no reason to put yourself through Interferon. Plan B is to observe you closely through scans. You've got some Yervoy in your body, and it's going to continue to do it's thing for a while after the last infusion.
Hope your stomach starts feeling better soon!
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- October 13, 2016 at 3:47 pm
Not everyone has to stop Yervoy completely when something like this comes up. Sometimes the next infusion get pushed back until your symptoms have cleared up and you've weaned off the steroids.
If you do have to stop Yervoy, there is no reason to put yourself through Interferon. Plan B is to observe you closely through scans. You've got some Yervoy in your body, and it's going to continue to do it's thing for a while after the last infusion.
Hope your stomach starts feeling better soon!
-
- October 13, 2016 at 2:40 pm
Thanks Lauren,
So I'm back home from the hospital. My CT scan came back clear and I have no infection. I was on IV fluids for 48 hours straight. I had a colonoscopy yesterday morning and they told me that I had a lot of inflammation in my colon and intestines, meaning colitis OR possibly due to the Yervoy.
They are keeping me on oral steroids for the inflammation. I woke up today with nausea and two diarrhea's so far. UGGGHH!!!
I have an appointment to see my treating oncologist today at 1pm. We will discuss everything and most likely they will recommend stopping the Yervoy and start plan B which is only Interferon right, for stage 3???
Anyone have ideas and/or suggestions for me?? I have a list of questions for my appointment today but anything else might be helpful.
Thanks,
Stacy
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- October 15, 2016 at 3:12 pm
So an update here. Was admitted in the hospital for a couple of days to try and figure out what is going on with my GI side effects.
I was on 48 hours of IV fluids, given 240mg of steroids per day as well. I had a colonoscopy on Wednesday morning and the results came back with moderate acute colitis, not ulcerative. Very likely due to the ipi.
Met with my Oncologist on Thursday to discuss. He is of the opinion that the ipi caused my colitis and thus recommends stopping treatment. First gotta get these side effects under control.
He added Budesonide twice a day. Also added Potassium 10mg a day since my levels were low. Still taking 80mg of Prednisone and a ppi everyday as well. There is no plan B regarding treatment…interferon is not an option for many reasons. Will watch and see, hopefully get my side effects under control and will have a scan before the end of the year (since my deductible has been met) to see what things look like.
The last two days I've felt better, less nausea and only one diarrhea (yeah)! I guess we'll see how things play out!
Happy Saturday……
Stacy
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- October 15, 2016 at 3:12 pm
So an update here. Was admitted in the hospital for a couple of days to try and figure out what is going on with my GI side effects.
I was on 48 hours of IV fluids, given 240mg of steroids per day as well. I had a colonoscopy on Wednesday morning and the results came back with moderate acute colitis, not ulcerative. Very likely due to the ipi.
Met with my Oncologist on Thursday to discuss. He is of the opinion that the ipi caused my colitis and thus recommends stopping treatment. First gotta get these side effects under control.
He added Budesonide twice a day. Also added Potassium 10mg a day since my levels were low. Still taking 80mg of Prednisone and a ppi everyday as well. There is no plan B regarding treatment…interferon is not an option for many reasons. Will watch and see, hopefully get my side effects under control and will have a scan before the end of the year (since my deductible has been met) to see what things look like.
The last two days I've felt better, less nausea and only one diarrhea (yeah)! I guess we'll see how things play out!
Happy Saturday……
Stacy
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- March 25, 2017 at 1:56 pm
Hi Stacy, I'm quite a bit behind you–Phase IV, gyn musocal. melanoma. I had 1st dose Ipi-Nivo only in late January at Dana Farber. Diarrhea developed week 2-3. Mid-February was pretty consisitent, so they stopped additional doses and have been working over past 5-6 weeks to resolve colitis. Was inpatient for IV steroids at 160 mg/day. Tried tapering twice, both times didn't quite work to fix diarrhea. This time, so far, the taper seems to be working & have gotten to 100/day. The plan is to resolve colitis and then come up with new melanoma plan. Scans are at end April Hoping your situation is good! I'll have to see how things play out, too! JoAnn
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- October 15, 2016 at 3:12 pm
So an update here. Was admitted in the hospital for a couple of days to try and figure out what is going on with my GI side effects.
I was on 48 hours of IV fluids, given 240mg of steroids per day as well. I had a colonoscopy on Wednesday morning and the results came back with moderate acute colitis, not ulcerative. Very likely due to the ipi.
Met with my Oncologist on Thursday to discuss. He is of the opinion that the ipi caused my colitis and thus recommends stopping treatment. First gotta get these side effects under control.
He added Budesonide twice a day. Also added Potassium 10mg a day since my levels were low. Still taking 80mg of Prednisone and a ppi everyday as well. There is no plan B regarding treatment…interferon is not an option for many reasons. Will watch and see, hopefully get my side effects under control and will have a scan before the end of the year (since my deductible has been met) to see what things look like.
The last two days I've felt better, less nausea and only one diarrhea (yeah)! I guess we'll see how things play out!
Happy Saturday……
Stacy
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