› Forums › General Melanoma Community › Anti PD 1 – Diarrhea and diet
- This topic has 27 replies, 6 voices, and was last updated 8 years, 6 months ago by
nikkibeesley00.
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- August 30, 2015 at 10:13 pm
Hey folks,
Has anyone on Opdivo/Keytruda found any links between diet how you're feeling? I'm having one of my "bad days" today – lots of cramping and diarrhea. I've been trying to make a connection between my diet and these "bad days" but I haven't found a link. I also don't see anything that I'm doing differently on the good/great days. I haven't cut out any foods and eat a variety of fruits, vegetables, meats, and grains. I don't drink alcohol and occasionally eat sweets. I go for walks daily, work out with a trainer twice a week, and constantly play with/chase my two little ones. I get a fair amount of rest, but have a baby who wakes frequently at night. I know that treatment may not alway be easy, but if others have found ways to make it easier, please share!
FYI, I'm not looking for a way to cure my melanoma with diet.
Ashley
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- August 31, 2015 at 12:14 am
Hey Ashley,
It may be something super simple…but all immunotherapy…has the potential to create colitis. The premier signs are cramping and diarrhea….NOT related to diet. Be sure to talk to your oncologist about these issues…especially if they persist. Sounds like you are one super busy lady who is an example to us all, but please talk to your onc about these symptoms. Hang in there. Celeste
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- August 31, 2015 at 12:14 am
Hey Ashley,
It may be something super simple…but all immunotherapy…has the potential to create colitis. The premier signs are cramping and diarrhea….NOT related to diet. Be sure to talk to your oncologist about these issues…especially if they persist. Sounds like you are one super busy lady who is an example to us all, but please talk to your onc about these symptoms. Hang in there. Celeste
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- August 31, 2015 at 12:14 am
Hey Ashley,
It may be something super simple…but all immunotherapy…has the potential to create colitis. The premier signs are cramping and diarrhea….NOT related to diet. Be sure to talk to your oncologist about these issues…especially if they persist. Sounds like you are one super busy lady who is an example to us all, but please talk to your onc about these symptoms. Hang in there. Celeste
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- August 31, 2015 at 1:24 am
Thanks Celeste. It's typically not awful, but about one day every 2 week cycle I have a really bad day. My local oncologist knows, as does my specialist at MD Anderson. When I was on the Opdivo/Yervoy trial down there I got really sick, lost 20 pounds, was admitted to the hospital, and kicked off the trial. They did a colonoscopy and everything was fine – I'm no where near feeling like that! I thought maybe others have figured out "the secret." 😉
Ashley
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- August 31, 2015 at 1:24 am
Thanks Celeste. It's typically not awful, but about one day every 2 week cycle I have a really bad day. My local oncologist knows, as does my specialist at MD Anderson. When I was on the Opdivo/Yervoy trial down there I got really sick, lost 20 pounds, was admitted to the hospital, and kicked off the trial. They did a colonoscopy and everything was fine – I'm no where near feeling like that! I thought maybe others have figured out "the secret." 😉
Ashley
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- August 31, 2015 at 1:24 am
Thanks Celeste. It's typically not awful, but about one day every 2 week cycle I have a really bad day. My local oncologist knows, as does my specialist at MD Anderson. When I was on the Opdivo/Yervoy trial down there I got really sick, lost 20 pounds, was admitted to the hospital, and kicked off the trial. They did a colonoscopy and everything was fine – I'm no where near feeling like that! I thought maybe others have figured out "the secret." 😉
Ashley
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- August 31, 2015 at 1:30 am
Well, obviously you know the score!! Fo sho!!! So, you have that covered. Never had tummy stuff during my 2 1/2 years of nivo. Itching, mouth ulcers, arthralgias and wheezing was my thing, HA! Hang in there. Perhaps there are those out there with better intel!!! c
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- August 31, 2015 at 1:30 am
Well, obviously you know the score!! Fo sho!!! So, you have that covered. Never had tummy stuff during my 2 1/2 years of nivo. Itching, mouth ulcers, arthralgias and wheezing was my thing, HA! Hang in there. Perhaps there are those out there with better intel!!! c
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- August 31, 2015 at 1:30 am
Well, obviously you know the score!! Fo sho!!! So, you have that covered. Never had tummy stuff during my 2 1/2 years of nivo. Itching, mouth ulcers, arthralgias and wheezing was my thing, HA! Hang in there. Perhaps there are those out there with better intel!!! c
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- August 31, 2015 at 2:51 pm
Hi ,
i have not taken keytruda but have ippi and I had a lot of days with GI issues I could not also put it to any food I was eating but just tried to eat healthy diet . I told my consultant but he just said keep up with treatment and keep a eye on it. Immunatherapy treatment does have this side effect. Keep eating well and drinking plenty of water.
Keep up the good fight
scooby123
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- September 1, 2015 at 12:26 am
I spent about a month unable to eat much of anything at all thanks to ipi. I lost about 15 pounds, which for me was actually a good thing, although I put it all back on. lol But I wouldn't wish what I put up with on anybody. Sounds like you had a similiar experience. Mine started about a month after my last infusion of ipi. Up until that point I had been fine.
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- September 1, 2015 at 12:26 am
I spent about a month unable to eat much of anything at all thanks to ipi. I lost about 15 pounds, which for me was actually a good thing, although I put it all back on. lol But I wouldn't wish what I put up with on anybody. Sounds like you had a similiar experience. Mine started about a month after my last infusion of ipi. Up until that point I had been fine.
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- September 1, 2015 at 12:26 am
I spent about a month unable to eat much of anything at all thanks to ipi. I lost about 15 pounds, which for me was actually a good thing, although I put it all back on. lol But I wouldn't wish what I put up with on anybody. Sounds like you had a similiar experience. Mine started about a month after my last infusion of ipi. Up until that point I had been fine.
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- August 31, 2015 at 2:51 pm
Hi ,
i have not taken keytruda but have ippi and I had a lot of days with GI issues I could not also put it to any food I was eating but just tried to eat healthy diet . I told my consultant but he just said keep up with treatment and keep a eye on it. Immunatherapy treatment does have this side effect. Keep eating well and drinking plenty of water.
Keep up the good fight
scooby123
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- August 31, 2015 at 2:51 pm
Hi ,
i have not taken keytruda but have ippi and I had a lot of days with GI issues I could not also put it to any food I was eating but just tried to eat healthy diet . I told my consultant but he just said keep up with treatment and keep a eye on it. Immunatherapy treatment does have this side effect. Keep eating well and drinking plenty of water.
Keep up the good fight
scooby123
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- September 1, 2015 at 12:24 am
Now you have made me curious. I have had 2 cycles of Keytruda. Third infusion this Thursday. I haven't modified my diet, even though I should get back to the discipline i had last summer before it was discovered that my melanoma had returned.
I haven't had anything resembling real side effects. Some mild itching, a little rash on my chest that comes and goes, and my oncologist thinks may actually still be left over from ipi. I have had some mild diarrhea that comes and goes. After reading your post I'm going to pay more attention to when that happens, and what I have had to eat/drink. I eat organic as much as possible, very little red meat, and I do drink alcohol on occasion. I'll make sure to notice if there's something that seems to bring on the diarrhea, and I'll let you know what if anything I find out.
-Bill
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- September 1, 2015 at 12:24 am
Now you have made me curious. I have had 2 cycles of Keytruda. Third infusion this Thursday. I haven't modified my diet, even though I should get back to the discipline i had last summer before it was discovered that my melanoma had returned.
I haven't had anything resembling real side effects. Some mild itching, a little rash on my chest that comes and goes, and my oncologist thinks may actually still be left over from ipi. I have had some mild diarrhea that comes and goes. After reading your post I'm going to pay more attention to when that happens, and what I have had to eat/drink. I eat organic as much as possible, very little red meat, and I do drink alcohol on occasion. I'll make sure to notice if there's something that seems to bring on the diarrhea, and I'll let you know what if anything I find out.
-Bill
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- September 1, 2015 at 12:24 am
Now you have made me curious. I have had 2 cycles of Keytruda. Third infusion this Thursday. I haven't modified my diet, even though I should get back to the discipline i had last summer before it was discovered that my melanoma had returned.
I haven't had anything resembling real side effects. Some mild itching, a little rash on my chest that comes and goes, and my oncologist thinks may actually still be left over from ipi. I have had some mild diarrhea that comes and goes. After reading your post I'm going to pay more attention to when that happens, and what I have had to eat/drink. I eat organic as much as possible, very little red meat, and I do drink alcohol on occasion. I'll make sure to notice if there's something that seems to bring on the diarrhea, and I'll let you know what if anything I find out.
-Bill
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- September 2, 2015 at 6:22 pm
For ease diarrhea, my suggestion is that, try drink boiled watter instead of directly from tap or filtered. If possible, do not drink water with ice.
Be very careful of milk intake too.
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- October 29, 2015 at 5:48 am
Hi everyone, I've had 10 rounds of Opdivo with severe diarrhea at first. The doctor put me on steriods and that helped but every time i came off it would recur. Knowing this was a side effect I tried to deal with it and a nurse friend of mine suggested trying immodium, I tried it and it worked! I was having diarrhea 6-7 times a day, now I have either a regular bowel movement with a stomach ache and i immediately take the immodium or i will have 1-2 rounds of diarrhea and take the immudiom and everything is fine. My onologist knows and is fine with this and I actually started to put on weight! Basically I take 2 immodium every 24 hours, the further away from treatment i get (every two weeks so at the end of my two week cycle) it starts to flare up again and I may have to take an extra one but you can take up to 4 in a 24 hour period. So far its been working great for me and my tumors have shrunk 50% according to my first progress scans i just had done so to anyone experiecing this I would say try immudiom, i use the CVS or Walmart brand in the gel capsules because the name brand is expensive and also dissovles in your mouth making it very unpleasant to take! Hope this helps someone else!!!!!
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- October 29, 2015 at 5:48 am
Hi everyone, I've had 10 rounds of Opdivo with severe diarrhea at first. The doctor put me on steriods and that helped but every time i came off it would recur. Knowing this was a side effect I tried to deal with it and a nurse friend of mine suggested trying immodium, I tried it and it worked! I was having diarrhea 6-7 times a day, now I have either a regular bowel movement with a stomach ache and i immediately take the immodium or i will have 1-2 rounds of diarrhea and take the immudiom and everything is fine. My onologist knows and is fine with this and I actually started to put on weight! Basically I take 2 immodium every 24 hours, the further away from treatment i get (every two weeks so at the end of my two week cycle) it starts to flare up again and I may have to take an extra one but you can take up to 4 in a 24 hour period. So far its been working great for me and my tumors have shrunk 50% according to my first progress scans i just had done so to anyone experiecing this I would say try immudiom, i use the CVS or Walmart brand in the gel capsules because the name brand is expensive and also dissovles in your mouth making it very unpleasant to take! Hope this helps someone else!!!!!
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- October 29, 2015 at 5:48 am
Hi everyone, I've had 10 rounds of Opdivo with severe diarrhea at first. The doctor put me on steriods and that helped but every time i came off it would recur. Knowing this was a side effect I tried to deal with it and a nurse friend of mine suggested trying immodium, I tried it and it worked! I was having diarrhea 6-7 times a day, now I have either a regular bowel movement with a stomach ache and i immediately take the immodium or i will have 1-2 rounds of diarrhea and take the immudiom and everything is fine. My onologist knows and is fine with this and I actually started to put on weight! Basically I take 2 immodium every 24 hours, the further away from treatment i get (every two weeks so at the end of my two week cycle) it starts to flare up again and I may have to take an extra one but you can take up to 4 in a 24 hour period. So far its been working great for me and my tumors have shrunk 50% according to my first progress scans i just had done so to anyone experiecing this I would say try immudiom, i use the CVS or Walmart brand in the gel capsules because the name brand is expensive and also dissovles in your mouth making it very unpleasant to take! Hope this helps someone else!!!!!
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