Ippi side effects

I'm currently on Ipi.  I'll be getting my 4th and last infusion next week.  Side effects for me have been an itch all over but it's tolerable.  I use benedryl cream if it gets too bad.  As far as wether it was a success I don't know yet.  My specialist told me it takes 3-5 months sometimes.  I'm hoping it will kick in after my last infusion next week.  According to the tumor on my arm that I can feel and see I am stable.  I'm also taking Dabrafenib so I don't know if it's that or the ipi keeping me stable.  The infusion takes a couple of hours and I'm usually napping from the benedryl they infuse before the ippi.  Overall I would say I'm tolerating Ipi pretty well which I think or have heard that most people do.  I wish I could tell you I am NED from the Ipi but it's too soon for me to know.  I hope some people who have had success will post and let us know how long it took for it to kick in.

All my best to you and your dad,

Denise

I'm currently on Ipi.  I'll be getting my 4th and last infusion next week.  Side effects for me have been an itch all over but it's tolerable.  I use benedryl cream if it gets too bad.  As far as wether it was a success I don't know yet.  My specialist told me it takes 3-5 months sometimes.  I'm hoping it will kick in after my last infusion next week.  According to the tumor on my arm that I can feel and see I am stable.  I'm also taking Dabrafenib so I don't know if it's that or the ipi keeping me stable.  The infusion takes a couple of hours and I'm usually napping from the benedryl they infuse before the ippi.  Overall I would say I'm tolerating Ipi pretty well which I think or have heard that most people do.  I wish I could tell you I am NED from the Ipi but it's too soon for me to know.  I hope some people who have had success will post and let us know how long it took for it to kick in.

All my best to you and your dad,

Denise

I'm currently on Ipi.  I'll be getting my 4th and last infusion next week.  Side effects for me have been an itch all over but it's tolerable.  I use benedryl cream if it gets too bad.  As far as wether it was a success I don't know yet.  My specialist told me it takes 3-5 months sometimes.  I'm hoping it will kick in after my last infusion next week.  According to the tumor on my arm that I can feel and see I am stable.  I'm also taking Dabrafenib so I don't know if it's that or the ipi keeping me stable.  The infusion takes a couple of hours and I'm usually napping from the benedryl they infuse before the ippi.  Overall I would say I'm tolerating Ipi pretty well which I think or have heard that most people do.  I wish I could tell you I am NED from the Ipi but it's too soon for me to know.  I hope some people who have had success will post and let us know how long it took for it to kick in.

All my best to you and your dad,

Denise

Hi,

My husband has been on Ipi Clinical Trial for 2 1/2 years now and he is NED.  The itch was the worst but bearable and his eyebrows turned white along with his beard and he also lost some pigmentation from the collar bone up.

It didn't take him long at all and we saw the sub q's shrink away.  If you want to read more it is on his profile.  How he went from Stage IIIC to Stage IV and now NED.

If you put Ipi or Yervoy in the search box at the upper part of the page you can see more info.

The best of luck to your dad.

Judy (loving wife of Gene Stage IV and now NED)

Hi,

My husband has been on Ipi Clinical Trial for 2 1/2 years now and he is NED.  The itch was the worst but bearable and his eyebrows turned white along with his beard and he also lost some pigmentation from the collar bone up.

It didn't take him long at all and we saw the sub q's shrink away.  If you want to read more it is on his profile.  How he went from Stage IIIC to Stage IV and now NED.

If you put Ipi or Yervoy in the search box at the upper part of the page you can see more info.

The best of luck to your dad.

Judy (loving wife of Gene Stage IV and now NED)

Hi,

My husband has been on Ipi Clinical Trial for 2 1/2 years now and he is NED.  The itch was the worst but bearable and his eyebrows turned white along with his beard and he also lost some pigmentation from the collar bone up.

It didn't take him long at all and we saw the sub q's shrink away.  If you want to read more it is on his profile.  How he went from Stage IIIC to Stage IV and now NED.

If you put Ipi or Yervoy in the search box at the upper part of the page you can see more info.

The best of luck to your dad.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

I am also on Ipi, well, technically just finished Ipi as I got my 4th dose a week and a half ago. I didn't really have any itching or other skin related side effects, but after some (not all) of the doses I did have some mild issues with loose stool and after this last dose some fatigue. I don't know how well it will work- I have a lot of subQ mets and some have shrunk, some haven't, but none are gone. I have a CT scheduled for the second week of September which will give more info, although they don't necessarily expect it to look too different from the pre treatment scans. If things look at least mostly stable they'll probably wait another month or 2 and scan again. In the mean time I'm trying to decide whether I want to try and jump right into a trial or give the Ipi more time to show effects. Some people get faster responses, some are slower which is part of what makes Ipi a bit nerve wracking (at least for me), but I think most people do very well and have very few (and mild) side effects.

Best of Luck

-Eva

Hello,

I am also on Ipi, well, technically just finished Ipi as I got my 4th dose a week and a half ago. I didn't really have any itching or other skin related side effects, but after some (not all) of the doses I did have some mild issues with loose stool and after this last dose some fatigue. I don't know how well it will work- I have a lot of subQ mets and some have shrunk, some haven't, but none are gone. I have a CT scheduled for the second week of September which will give more info, although they don't necessarily expect it to look too different from the pre treatment scans. If things look at least mostly stable they'll probably wait another month or 2 and scan again. In the mean time I'm trying to decide whether I want to try and jump right into a trial or give the Ipi more time to show effects. Some people get faster responses, some are slower which is part of what makes Ipi a bit nerve wracking (at least for me), but I think most people do very well and have very few (and mild) side effects.

Best of Luck

-Eva

Hello,

I am also on Ipi, well, technically just finished Ipi as I got my 4th dose a week and a half ago. I didn't really have any itching or other skin related side effects, but after some (not all) of the doses I did have some mild issues with loose stool and after this last dose some fatigue. I don't know how well it will work- I have a lot of subQ mets and some have shrunk, some haven't, but none are gone. I have a CT scheduled for the second week of September which will give more info, although they don't necessarily expect it to look too different from the pre treatment scans. If things look at least mostly stable they'll probably wait another month or 2 and scan again. In the mean time I'm trying to decide whether I want to try and jump right into a trial or give the Ipi more time to show effects. Some people get faster responses, some are slower which is part of what makes Ipi a bit nerve wracking (at least for me), but I think most people do very well and have very few (and mild) side effects.

Best of Luck

-Eva

I just received my third dose of Ipi this past Monday.  So far my side effects have been totally tolerable.  Some issues with occasional loose stools (I'm skipping anything spicy as that seems to cause issues) and I've got some stuffy sinuses which may or may not be related but I typically don't catch colds so I'm inclined to think it's somehow related.  I also get a bit of fatigue for the week or so after the infusion.

So far so good!  WAY easier to handle than Interferon (so far!).

I just received my third dose of Ipi this past Monday.  So far my side effects have been totally tolerable.  Some issues with occasional loose stools (I'm skipping anything spicy as that seems to cause issues) and I've got some stuffy sinuses which may or may not be related but I typically don't catch colds so I'm inclined to think it's somehow related.  I also get a bit of fatigue for the week or so after the infusion.

So far so good!  WAY easier to handle than Interferon (so far!).

I just received my third dose of Ipi this past Monday.  So far my side effects have been totally tolerable.  Some issues with occasional loose stools (I'm skipping anything spicy as that seems to cause issues) and I've got some stuffy sinuses which may or may not be related but I typically don't catch colds so I'm inclined to think it's somehow related.  I also get a bit of fatigue for the week or so after the infusion.

So far so good!  WAY easier to handle than Interferon (so far!).

Hi there – first off, good luck to your dad next week. And you hang in there too. Being a caregiver is hard too. My husband has his last (4th) infusion on Sept. 10. So far he's tolerating it fairly well. He had some loose bowels after his first infusion that delayed his second one by a week – steroids corrected the problem. He's also had some stomach issues (nausea, pain) but it's hard to say if it's from the ipi or radiation (he had a tumor in his lower spine) … he seemed to have developed an intolerance to dairy products so he's either cut them out or moved to lactose-free products. He does seem to get fatigued easily and oftentimes says he just doesn't feel like himself – almost as if he has the flu. Other side effects have included: his tattoos have intermittedly become raised (for about 1-2 hours at a time, after the 1st and 2nd doses) and "lumps" aka injection sites from a vaccine trial (MAVIS) he was in get very red, raised and itchy. All in all, we feel fortunate that he's gotten three doses in and should be on schedule for his fourth. Now, it's just hoping and praying the stuff works its magic. 

Hi there – first off, good luck to your dad next week. And you hang in there too. Being a caregiver is hard too. My husband has his last (4th) infusion on Sept. 10. So far he's tolerating it fairly well. He had some loose bowels after his first infusion that delayed his second one by a week – steroids corrected the problem. He's also had some stomach issues (nausea, pain) but it's hard to say if it's from the ipi or radiation (he had a tumor in his lower spine) … he seemed to have developed an intolerance to dairy products so he's either cut them out or moved to lactose-free products. He does seem to get fatigued easily and oftentimes says he just doesn't feel like himself – almost as if he has the flu. Other side effects have included: his tattoos have intermittedly become raised (for about 1-2 hours at a time, after the 1st and 2nd doses) and "lumps" aka injection sites from a vaccine trial (MAVIS) he was in get very red, raised and itchy. All in all, we feel fortunate that he's gotten three doses in and should be on schedule for his fourth. Now, it's just hoping and praying the stuff works its magic. 

Hi there – first off, good luck to your dad next week. And you hang in there too. Being a caregiver is hard too. My husband has his last (4th) infusion on Sept. 10. So far he's tolerating it fairly well. He had some loose bowels after his first infusion that delayed his second one by a week – steroids corrected the problem. He's also had some stomach issues (nausea, pain) but it's hard to say if it's from the ipi or radiation (he had a tumor in his lower spine) … he seemed to have developed an intolerance to dairy products so he's either cut them out or moved to lactose-free products. He does seem to get fatigued easily and oftentimes says he just doesn't feel like himself – almost as if he has the flu. Other side effects have included: his tattoos have intermittedly become raised (for about 1-2 hours at a time, after the 1st and 2nd doses) and "lumps" aka injection sites from a vaccine trial (MAVIS) he was in get very red, raised and itchy. All in all, we feel fortunate that he's gotten three doses in and should be on schedule for his fourth. Now, it's just hoping and praying the stuff works its magic.