› Forums › General Melanoma Community › Ippi experience after a week
- This topic has 21 replies, 5 voices, and was last updated 11 years, 10 months ago by
NYKaren.
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- January 23, 2013 at 6:38 pm
So its been alittle over a week since my first infusion of ippi and it seems like I am already having side effects. Started last week with my abdomin area felt like I ate something really spicy(which I didn't). Then on Monday had some stomach issue and diearria took some imoduim and went to see the on call doc he said didnt think it was ippi related.
So its been alittle over a week since my first infusion of ippi and it seems like I am already having side effects. Started last week with my abdomin area felt like I ate something really spicy(which I didn't). Then on Monday had some stomach issue and diearria took some imoduim and went to see the on call doc he said didnt think it was ippi related. Yesterday I started feeling really fatigued I went to sleep as soon as I got home from work only to wake up at 10 with stomach issues agian took some more imodium so far so good agian contacted the doctors office and they said just keep using imodium. I didnt expect to have the stomach issues and fatigue a week after the first does. Hopefully i gets better and not worse with the other does…yeah right I dont see that happening.
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- January 23, 2013 at 9:29 pm
Hi there,
I too started having diarrhea after my 1st dose of ipy . My onc. doesn’t believe in using immodium for Ipi-related diahrrea. He prescribes Budesinide, a steroid that ONLY works in the gut, so it’s not considered a systemic steroid. In the past, I’ve pushed very hard for people to try to go this route. I have since discovered that some melanoma onc’s do advise immodium as first treatment, and if it’s not effective, they go on to prescribe budesonine.My onc was one of the researchers involved w/Yervoy from the beginning, and I trust his protocol implicitly.
FYI, I did yervoy twice, about a year apart. The first time, budesonine did the trick the whole time. The second (known as reinduction) even budesonine didn’t work & I developed colitis after 3rd infusion.
Also, if your doctor doesn’t think that diarrhea can’t develop after first dose, he does not sound like a melanoma specialist to me.
Sorry this is so long, but I’ve seen too many people spend way too much time in the hospital and get way too sick to not take this issue very seriously. You can go to the yervoy website and call their on-call nurse for help.
Hope this helps,
karen
PS Most people do NOT get this sick, but it is imperative to have a doctor who knows how to address side-effects if they do occur. -
- January 23, 2013 at 9:29 pm
Hi there,
I too started having diarrhea after my 1st dose of ipy . My onc. doesn’t believe in using immodium for Ipi-related diahrrea. He prescribes Budesinide, a steroid that ONLY works in the gut, so it’s not considered a systemic steroid. In the past, I’ve pushed very hard for people to try to go this route. I have since discovered that some melanoma onc’s do advise immodium as first treatment, and if it’s not effective, they go on to prescribe budesonine.My onc was one of the researchers involved w/Yervoy from the beginning, and I trust his protocol implicitly.
FYI, I did yervoy twice, about a year apart. The first time, budesonine did the trick the whole time. The second (known as reinduction) even budesonine didn’t work & I developed colitis after 3rd infusion.
Also, if your doctor doesn’t think that diarrhea can’t develop after first dose, he does not sound like a melanoma specialist to me.
Sorry this is so long, but I’ve seen too many people spend way too much time in the hospital and get way too sick to not take this issue very seriously. You can go to the yervoy website and call their on-call nurse for help.
Hope this helps,
karen
PS Most people do NOT get this sick, but it is imperative to have a doctor who knows how to address side-effects if they do occur. -
- January 23, 2013 at 9:29 pm
Hi there,
I too started having diarrhea after my 1st dose of ipy . My onc. doesn’t believe in using immodium for Ipi-related diahrrea. He prescribes Budesinide, a steroid that ONLY works in the gut, so it’s not considered a systemic steroid. In the past, I’ve pushed very hard for people to try to go this route. I have since discovered that some melanoma onc’s do advise immodium as first treatment, and if it’s not effective, they go on to prescribe budesonine.My onc was one of the researchers involved w/Yervoy from the beginning, and I trust his protocol implicitly.
FYI, I did yervoy twice, about a year apart. The first time, budesonine did the trick the whole time. The second (known as reinduction) even budesonine didn’t work & I developed colitis after 3rd infusion.
Also, if your doctor doesn’t think that diarrhea can’t develop after first dose, he does not sound like a melanoma specialist to me.
Sorry this is so long, but I’ve seen too many people spend way too much time in the hospital and get way too sick to not take this issue very seriously. You can go to the yervoy website and call their on-call nurse for help.
Hope this helps,
karen
PS Most people do NOT get this sick, but it is imperative to have a doctor who knows how to address side-effects if they do occur.-
- January 30, 2013 at 11:27 pm
Hi Karen,
I just completed my 4th cycle of Ipi 3 weeks ago and had my PET scan Tuesday. Thankfully, I did not experience any side affects from the Ipi so I can't speak to stomach issues. I had 3 lung mets before I started with the Ipi and find out tomorrow the scan results. I was surprised that you did Ipi twice! I was under the impression that if the mm came back, Ipi wasn't an option again. After your first round of Ipi, did you go NED or just watch tumors? What made you do the second round, new mets?
Thanks so much for information you can share with me… wondering what next steps will be.
Sandy Grain
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- January 31, 2013 at 1:48 am
Hi Sandy,
My melanoma is metastatic cutaneous. It started on my scalp (unbeknownst to me–I thought they were pimples). After surgery I was thought to be NED but experienced recurrence within 3 months. It was very easy to see, being on my temple.
During/after ipi and il-2, I had a partial response. When this past summer rolled around, the mets were down to my chin and in my ear–so we decided to try reinduction. The thought was that since I was thought to be braf- and had responded somewhat, or at least remained stable for a few months the first time, that ipi reinduction might do the trick. The rest is painful history.
I hope this helps, please feel free to message me.
Next steps for you might be radiation–there is some evidence that radiation following ipy promotes response–just do a search here of ipi or Yervoy and radiation and you,ll see a lot of info, or maybe an anti Pd-1 trial?? You’re BRAF negative, right?
Good luck with your scans and please keep us posted.
Btw, your profile picture is beautiful.
Best,
Karen (sorry this turned out so long) -
- January 31, 2013 at 1:48 am
Hi Sandy,
My melanoma is metastatic cutaneous. It started on my scalp (unbeknownst to me–I thought they were pimples). After surgery I was thought to be NED but experienced recurrence within 3 months. It was very easy to see, being on my temple.
During/after ipi and il-2, I had a partial response. When this past summer rolled around, the mets were down to my chin and in my ear–so we decided to try reinduction. The thought was that since I was thought to be braf- and had responded somewhat, or at least remained stable for a few months the first time, that ipi reinduction might do the trick. The rest is painful history.
I hope this helps, please feel free to message me.
Next steps for you might be radiation–there is some evidence that radiation following ipy promotes response–just do a search here of ipi or Yervoy and radiation and you,ll see a lot of info, or maybe an anti Pd-1 trial?? You’re BRAF negative, right?
Good luck with your scans and please keep us posted.
Btw, your profile picture is beautiful.
Best,
Karen (sorry this turned out so long) -
- January 31, 2013 at 1:48 am
Hi Sandy,
My melanoma is metastatic cutaneous. It started on my scalp (unbeknownst to me–I thought they were pimples). After surgery I was thought to be NED but experienced recurrence within 3 months. It was very easy to see, being on my temple.
During/after ipi and il-2, I had a partial response. When this past summer rolled around, the mets were down to my chin and in my ear–so we decided to try reinduction. The thought was that since I was thought to be braf- and had responded somewhat, or at least remained stable for a few months the first time, that ipi reinduction might do the trick. The rest is painful history.
I hope this helps, please feel free to message me.
Next steps for you might be radiation–there is some evidence that radiation following ipy promotes response–just do a search here of ipi or Yervoy and radiation and you,ll see a lot of info, or maybe an anti Pd-1 trial?? You’re BRAF negative, right?
Good luck with your scans and please keep us posted.
Btw, your profile picture is beautiful.
Best,
Karen (sorry this turned out so long) -
- January 30, 2013 at 11:27 pm
Hi Karen,
I just completed my 4th cycle of Ipi 3 weeks ago and had my PET scan Tuesday. Thankfully, I did not experience any side affects from the Ipi so I can't speak to stomach issues. I had 3 lung mets before I started with the Ipi and find out tomorrow the scan results. I was surprised that you did Ipi twice! I was under the impression that if the mm came back, Ipi wasn't an option again. After your first round of Ipi, did you go NED or just watch tumors? What made you do the second round, new mets?
Thanks so much for information you can share with me… wondering what next steps will be.
Sandy Grain
-
- January 30, 2013 at 11:27 pm
Hi Karen,
I just completed my 4th cycle of Ipi 3 weeks ago and had my PET scan Tuesday. Thankfully, I did not experience any side affects from the Ipi so I can't speak to stomach issues. I had 3 lung mets before I started with the Ipi and find out tomorrow the scan results. I was surprised that you did Ipi twice! I was under the impression that if the mm came back, Ipi wasn't an option again. After your first round of Ipi, did you go NED or just watch tumors? What made you do the second round, new mets?
Thanks so much for information you can share with me… wondering what next steps will be.
Sandy Grain
-
- January 24, 2013 at 12:46 am
I have heard that the key to minimizing the side-effects of ipi is to nip them in the bud. Once an auto-immune response gets a hold, it can be hard to get it back under control. If Immodium is helping you, why don't you just take it all the time? (But don't exceed the maximum dose on the label.)
If you still get moderate to severe diarreah (>4 bowel movements above your normal), then your doctor will probably prescribe steroids. The Yervoy web site has a lot of great information and a hotline for you to call for help/advice. It's really up to you to know what the side effects are and demand that your doctor treat them aggressively. And, yes, I agree that you should be seeing someone with considerable personal experience with Yervoy. Most doctors, including oncologists, have no experience with it.
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- January 24, 2013 at 12:46 am
I have heard that the key to minimizing the side-effects of ipi is to nip them in the bud. Once an auto-immune response gets a hold, it can be hard to get it back under control. If Immodium is helping you, why don't you just take it all the time? (But don't exceed the maximum dose on the label.)
If you still get moderate to severe diarreah (>4 bowel movements above your normal), then your doctor will probably prescribe steroids. The Yervoy web site has a lot of great information and a hotline for you to call for help/advice. It's really up to you to know what the side effects are and demand that your doctor treat them aggressively. And, yes, I agree that you should be seeing someone with considerable personal experience with Yervoy. Most doctors, including oncologists, have no experience with it.
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- January 24, 2013 at 12:46 am
I have heard that the key to minimizing the side-effects of ipi is to nip them in the bud. Once an auto-immune response gets a hold, it can be hard to get it back under control. If Immodium is helping you, why don't you just take it all the time? (But don't exceed the maximum dose on the label.)
If you still get moderate to severe diarreah (>4 bowel movements above your normal), then your doctor will probably prescribe steroids. The Yervoy web site has a lot of great information and a hotline for you to call for help/advice. It's really up to you to know what the side effects are and demand that your doctor treat them aggressively. And, yes, I agree that you should be seeing someone with considerable personal experience with Yervoy. Most doctors, including oncologists, have no experience with it.
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- January 25, 2013 at 4:33 pm
I had bowel issues and fatigue the first week I took Yervoy too. I could feel my tumors shrinking at the same time these side effects started. I think it is not normal to start the side effects this early, but for sure possible. Let's hope your body is starting a major attack! I have only had that one dose (due to the colitis), and had an incredible response (more than a hundred tumors gone).
Prednisone took the side effects away for me just fine. Good luck!
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- January 25, 2013 at 7:28 pm
So glad pred alone worked fir you, Ali. I wound up having 2 infusions of Remicade to finally cure the colitis.
For those who have bowel issues that aren’t colitis and are able to continue yervoy, the steroid limit recommended by the manufacturer is 7.5 mg/day. The budesonine total of 9 mg/day does not count toward that. -
- January 25, 2013 at 7:28 pm
So glad pred alone worked fir you, Ali. I wound up having 2 infusions of Remicade to finally cure the colitis.
For those who have bowel issues that aren’t colitis and are able to continue yervoy, the steroid limit recommended by the manufacturer is 7.5 mg/day. The budesonine total of 9 mg/day does not count toward that. -
- January 25, 2013 at 7:28 pm
So glad pred alone worked fir you, Ali. I wound up having 2 infusions of Remicade to finally cure the colitis.
For those who have bowel issues that aren’t colitis and are able to continue yervoy, the steroid limit recommended by the manufacturer is 7.5 mg/day. The budesonine total of 9 mg/day does not count toward that.
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- January 25, 2013 at 4:33 pm
I had bowel issues and fatigue the first week I took Yervoy too. I could feel my tumors shrinking at the same time these side effects started. I think it is not normal to start the side effects this early, but for sure possible. Let's hope your body is starting a major attack! I have only had that one dose (due to the colitis), and had an incredible response (more than a hundred tumors gone).
Prednisone took the side effects away for me just fine. Good luck!
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- January 25, 2013 at 4:33 pm
I had bowel issues and fatigue the first week I took Yervoy too. I could feel my tumors shrinking at the same time these side effects started. I think it is not normal to start the side effects this early, but for sure possible. Let's hope your body is starting a major attack! I have only had that one dose (due to the colitis), and had an incredible response (more than a hundred tumors gone).
Prednisone took the side effects away for me just fine. Good luck!
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