First Ipi Infusion

Hi Denise,

I am not sure you would see signs that fast from Ipi but here is hoping it is.  It sure helps with the positive mental attitude at least.

Ipi can work for years.  My husband is still in the Ipi trial he started over 2 years ago.  You can read more in his profile but just a short synopsis he was Stage IV with unresectable lesion on his head at the cervical spine C1-2, 4 small sub q's in the same area, 3 in lung and 3 in liver.  He has been NED for 9 months.  His clinical trial was the 4 doses in 12 weeks of Ipi and then every 12 weeks after at 10mg/kg and GM-CSF 14 days of self injections and 7 days off.  He is still doing both.

We took pictures of the sub q's and compared them to a nickel coin and watched them shrink with each 3 weeks pictures.  Wishing you success and maybe you won't even need the Anti PD1 but at least you have a back up waiting if needed.

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

Hi Denise,

I am not sure you would see signs that fast from Ipi but here is hoping it is.  It sure helps with the positive mental attitude at least.

Ipi can work for years.  My husband is still in the Ipi trial he started over 2 years ago.  You can read more in his profile but just a short synopsis he was Stage IV with unresectable lesion on his head at the cervical spine C1-2, 4 small sub q's in the same area, 3 in lung and 3 in liver.  He has been NED for 9 months.  His clinical trial was the 4 doses in 12 weeks of Ipi and then every 12 weeks after at 10mg/kg and GM-CSF 14 days of self injections and 7 days off.  He is still doing both.

We took pictures of the sub q's and compared them to a nickel coin and watched them shrink with each 3 weeks pictures.  Wishing you success and maybe you won't even need the Anti PD1 but at least you have a back up waiting if needed.

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

Hi Denise,

I am not sure you would see signs that fast from Ipi but here is hoping it is.  It sure helps with the positive mental attitude at least.

Ipi can work for years.  My husband is still in the Ipi trial he started over 2 years ago.  You can read more in his profile but just a short synopsis he was Stage IV with unresectable lesion on his head at the cervical spine C1-2, 4 small sub q's in the same area, 3 in lung and 3 in liver.  He has been NED for 9 months.  His clinical trial was the 4 doses in 12 weeks of Ipi and then every 12 weeks after at 10mg/kg and GM-CSF 14 days of self injections and 7 days off.  He is still doing both.

We took pictures of the sub q's and compared them to a nickel coin and watched them shrink with each 3 weeks pictures.  Wishing you success and maybe you won't even need the Anti PD1 but at least you have a back up waiting if needed.

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

Hi Denise,

I just got my second dose of Ipi yesterday. Like you I have at least 7 brain mets (and actually just finished WBR on Monday) and was placed on Ipi in the hopes of stablizing things long enough to get into a PD-1 trial. As far as the speed of response, I'm not sure about 24 hrs, but I've certainly read about and been told by doctors that some people see a response within the frist week, though most people don't see a response until much later (after the 2nd, 3rd or 4th dose). I can tell you that I was averaging 3 new subQ mets a week for about a month before starting the Ipi (and who knows exactly what was happening in the rest of my body). After the first infusion I found a new subQ 2 days later, but none since. All of my other subQ mets that had been growing seem to have stabilized and some have started to shrink some, which everyone seems quite happy about. Some changes were starting to happen before the Ipi started, so there's no clear way to determine if it's really the Ipi or if the changes would have happened anyway, but quite frankly, I don't care as long as things stabilize or shrink. I really wasn't crazy about Ipi at the start because I didn't think I'd get a response either and the side effects worried me, but so far I'm doing OK with it and studies have shown it to be effective for brain mets if you get a response in the rest of your body. 

As far as how long it lasts if you get a response, my understanding is that it's a bit variable. It, like so many other therapies, has complete and partial responders. As with other therapies, the complete responders do better than many of the partial responders. I believe the average for a complete responder is somewhere around 3-5 years, with variable times for the partial responders. There is also some evidence (though it's very early yet) that the PD1 may work better and for more people when it follows a course of Ipi, so there's some hope there as well. 

Like one of the other responders, I have been placed on GM-CSF self injections for 14 days afte each infusion. That decision was based on the preliminary data released from the study that poster's husband is on right now. I'm still only getting the labled (3 mg/kg) dose of Ipi not the trials 10 mg/kg dose, but they did decide to add on the GM-CSF. There hasn't been any talk of a maintanance dose for me after the initial 4 infusions, but we'll cross that bridge when we get to it. 

I sincerely hope you tolerate the Ipi well and get a good response that lasts for years!

-Eva

PS: I didn't really notice anything for side effects for about a week after the infusion, and then I wasn't sure if it was from the Ipi or the GM-CSF, but mainly I had some tiredness (which could have also been from the radiation), I get nausous if I dont' eat at very regular intervals (I now carry granola bars and fruit rollups with me for quick boosts), and some diarrhea, which responds well to occasional Immodium. Wishing you the best

Hi Denise,

I just got my second dose of Ipi yesterday. Like you I have at least 7 brain mets (and actually just finished WBR on Monday) and was placed on Ipi in the hopes of stablizing things long enough to get into a PD-1 trial. As far as the speed of response, I'm not sure about 24 hrs, but I've certainly read about and been told by doctors that some people see a response within the frist week, though most people don't see a response until much later (after the 2nd, 3rd or 4th dose). I can tell you that I was averaging 3 new subQ mets a week for about a month before starting the Ipi (and who knows exactly what was happening in the rest of my body). After the first infusion I found a new subQ 2 days later, but none since. All of my other subQ mets that had been growing seem to have stabilized and some have started to shrink some, which everyone seems quite happy about. Some changes were starting to happen before the Ipi started, so there's no clear way to determine if it's really the Ipi or if the changes would have happened anyway, but quite frankly, I don't care as long as things stabilize or shrink. I really wasn't crazy about Ipi at the start because I didn't think I'd get a response either and the side effects worried me, but so far I'm doing OK with it and studies have shown it to be effective for brain mets if you get a response in the rest of your body. 

As far as how long it lasts if you get a response, my understanding is that it's a bit variable. It, like so many other therapies, has complete and partial responders. As with other therapies, the complete responders do better than many of the partial responders. I believe the average for a complete responder is somewhere around 3-5 years, with variable times for the partial responders. There is also some evidence (though it's very early yet) that the PD1 may work better and for more people when it follows a course of Ipi, so there's some hope there as well. 

Like one of the other responders, I have been placed on GM-CSF self injections for 14 days afte each infusion. That decision was based on the preliminary data released from the study that poster's husband is on right now. I'm still only getting the labled (3 mg/kg) dose of Ipi not the trials 10 mg/kg dose, but they did decide to add on the GM-CSF. There hasn't been any talk of a maintanance dose for me after the initial 4 infusions, but we'll cross that bridge when we get to it. 

I sincerely hope you tolerate the Ipi well and get a good response that lasts for years!

-Eva

PS: I didn't really notice anything for side effects for about a week after the infusion, and then I wasn't sure if it was from the Ipi or the GM-CSF, but mainly I had some tiredness (which could have also been from the radiation), I get nausous if I dont' eat at very regular intervals (I now carry granola bars and fruit rollups with me for quick boosts), and some diarrhea, which responds well to occasional Immodium. Wishing you the best

Hi Denise,

I just got my second dose of Ipi yesterday. Like you I have at least 7 brain mets (and actually just finished WBR on Monday) and was placed on Ipi in the hopes of stablizing things long enough to get into a PD-1 trial. As far as the speed of response, I'm not sure about 24 hrs, but I've certainly read about and been told by doctors that some people see a response within the frist week, though most people don't see a response until much later (after the 2nd, 3rd or 4th dose). I can tell you that I was averaging 3 new subQ mets a week for about a month before starting the Ipi (and who knows exactly what was happening in the rest of my body). After the first infusion I found a new subQ 2 days later, but none since. All of my other subQ mets that had been growing seem to have stabilized and some have started to shrink some, which everyone seems quite happy about. Some changes were starting to happen before the Ipi started, so there's no clear way to determine if it's really the Ipi or if the changes would have happened anyway, but quite frankly, I don't care as long as things stabilize or shrink. I really wasn't crazy about Ipi at the start because I didn't think I'd get a response either and the side effects worried me, but so far I'm doing OK with it and studies have shown it to be effective for brain mets if you get a response in the rest of your body. 

As far as how long it lasts if you get a response, my understanding is that it's a bit variable. It, like so many other therapies, has complete and partial responders. As with other therapies, the complete responders do better than many of the partial responders. I believe the average for a complete responder is somewhere around 3-5 years, with variable times for the partial responders. There is also some evidence (though it's very early yet) that the PD1 may work better and for more people when it follows a course of Ipi, so there's some hope there as well. 

Like one of the other responders, I have been placed on GM-CSF self injections for 14 days afte each infusion. That decision was based on the preliminary data released from the study that poster's husband is on right now. I'm still only getting the labled (3 mg/kg) dose of Ipi not the trials 10 mg/kg dose, but they did decide to add on the GM-CSF. There hasn't been any talk of a maintanance dose for me after the initial 4 infusions, but we'll cross that bridge when we get to it. 

I sincerely hope you tolerate the Ipi well and get a good response that lasts for years!

-Eva

PS: I didn't really notice anything for side effects for about a week after the infusion, and then I wasn't sure if it was from the Ipi or the GM-CSF, but mainly I had some tiredness (which could have also been from the radiation), I get nausous if I dont' eat at very regular intervals (I now carry granola bars and fruit rollups with me for quick boosts), and some diarrhea, which responds well to occasional Immodium. Wishing you the best

Denise,

I have also read that some people respond quickly. Kind of strikes me funny that it never occured to you that the ipi may work,lol! YES…it just might be the thing for you!! My Dr in St Louis has patients that started back in the first clinical trials 5-6 yrs ago who are still disease free! 

Tina

Denise,

I have also read that some people respond quickly. Kind of strikes me funny that it never occured to you that the ipi may work,lol! YES…it just might be the thing for you!! My Dr in St Louis has patients that started back in the first clinical trials 5-6 yrs ago who are still disease free! 

Tina

Denise,

I have also read that some people respond quickly. Kind of strikes me funny that it never occured to you that the ipi may work,lol! YES…it just might be the thing for you!! My Dr in St Louis has patients that started back in the first clinical trials 5-6 yrs ago who are still disease free! 

Tina

My boyfriend did yervoy and things stopped growing  almost right away, but nothing got smaller.  About 5 or so months later  he progressed.  He started Pd-1 trial February 1st and all tumors are shrinking or gone.   As ecc26 mentioned there is some studies showing a good response to pd-1 after yervoy.  

-Amanda-

My boyfriend did yervoy and things stopped growing  almost right away, but nothing got smaller.  About 5 or so months later  he progressed.  He started Pd-1 trial February 1st and all tumors are shrinking or gone.   As ecc26 mentioned there is some studies showing a good response to pd-1 after yervoy.  

-Amanda-

My boyfriend did yervoy and things stopped growing  almost right away, but nothing got smaller.  About 5 or so months later  he progressed.  He started Pd-1 trial February 1st and all tumors are shrinking or gone.   As ecc26 mentioned there is some studies showing a good response to pd-1 after yervoy.  

-Amanda-

Hi Denise,

 I was on Ipi from 3/08 -11/08. I had no tumor burden as the melanoma was resected. I had a total of 4 infusions and started feeling minor side effects weeks after the 1st infusion. On the trial I was on they ran some of my blood through a cell separator and took some of the white blood cells for analysis. My onc said I had a huge response due to the proliferation of T cells. He said these cells will stay active for years (didn't put a number on how many years, probably no one knows). Later, after the 4th infusion I had a huge side effect; hypothysitis or swelling of the pituitary. This was discovered from an MRI after I complained of severe headaches for 2 weeks. I'm on a hormone replacement, probably for life. Anyway I'm over 4.5 years NED since Ipi and over 5.5 years NED since my surgery. Hoping and praying for the best outcome for you!

 God Bless,

Jim M.

Hi Denise,

 I was on Ipi from 3/08 -11/08. I had no tumor burden as the melanoma was resected. I had a total of 4 infusions and started feeling minor side effects weeks after the 1st infusion. On the trial I was on they ran some of my blood through a cell separator and took some of the white blood cells for analysis. My onc said I had a huge response due to the proliferation of T cells. He said these cells will stay active for years (didn't put a number on how many years, probably no one knows). Later, after the 4th infusion I had a huge side effect; hypothysitis or swelling of the pituitary. This was discovered from an MRI after I complained of severe headaches for 2 weeks. I'm on a hormone replacement, probably for life. Anyway I'm over 4.5 years NED since Ipi and over 5.5 years NED since my surgery. Hoping and praying for the best outcome for you!

 God Bless,

Jim M.

Hi Denise,

 I was on Ipi from 3/08 -11/08. I had no tumor burden as the melanoma was resected. I had a total of 4 infusions and started feeling minor side effects weeks after the 1st infusion. On the trial I was on they ran some of my blood through a cell separator and took some of the white blood cells for analysis. My onc said I had a huge response due to the proliferation of T cells. He said these cells will stay active for years (didn't put a number on how many years, probably no one knows). Later, after the 4th infusion I had a huge side effect; hypothysitis or swelling of the pituitary. This was discovered from an MRI after I complained of severe headaches for 2 weeks. I'm on a hormone replacement, probably for life. Anyway I'm over 4.5 years NED since Ipi and over 5.5 years NED since my surgery. Hoping and praying for the best outcome for you!

 God Bless,

Jim M.