› Forums › General Melanoma Community › I forgot IPI!
- This topic has 33 replies, 6 voices, and was last updated 12 years, 6 months ago by Lisa13.
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- November 12, 2011 at 9:24 pm
There is serious talk that they will be using 10 Mg as the most likely standard. And reinduction is probably going to be used regualrly for previous responders…I am not a ipi person but thought it was a tidbit you might like. Also a patient who had 3 or 4 doses and then nothing else was still regressing at 38 weeks with no further ipi.
There is serious talk that they will be using 10 Mg as the most likely standard. And reinduction is probably going to be used regualrly for previous responders…I am not a ipi person but thought it was a tidbit you might like. Also a patient who had 3 or 4 doses and then nothing else was still regressing at 38 weeks with no further ipi.
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- November 13, 2011 at 12:01 am
Wow, I get 3mg per dose for a total of 12 mg. That is a HUGE difference from a total of 40mg. If 10mg. is considered the dose that is most effective, then it almost seems like a waste of time, money, and possibly life to be on the 3mg. I hope I am missing something here…
Thanks for scooping the seminars, Lynn!
Cristy, Stage IV
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- November 13, 2011 at 12:37 am
I agree Christy. If they are considering changing it, then what happens to the rest of us who've been doing 3mg??? I also know that if they start doing maintenance shots, you better believe I'll be requesting that as well and I know you would too.
One thing I'm also confused about and maybe it's just a typo – after 3-4 treatments "a patient" had continued regression long after the 24 week scan. This to me sounds like 1 patient. At my 12 week scan, I had 50% regression, so I"m only hoping that it will continue to shrink and that many other people experienced this.
What I'm starting to believe and I'm not even sure if Dr's are aware of this, but I think that finishing after 4 infusions is not enough. I believe if maintenace continues every 3 months, cancer may continue to shrink or disappear. I got 2 new brain mets while getting great success from this drug, so I often wonder, if they kept giving me the drug, if it would eventually shrink or go away? Take for example Gene S. His tumours are still shrinking and disappearing and he's getting the maintenance from this drug as well as GM-SCF. What if he had stopped the drug completely after 4 shots? Our warrior – Jerry from Cap Cod (I think) also received maintenance shots and both lung and brain mets disappeared long after the 24 week scan.
I'll be having a huge conversation with my Dr. about this. π
Thanks so much for posting this Lynn and giving us all kinds of info π
Lisa
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- November 13, 2011 at 12:59 am
I already had the maintenance conversation with my doctor. It's not an option in the VA system. Next stop after Ipi, Zelboraf. And I am not too anxious to start Zelboraf considering all of the bad press it has been getting lately! One day at a time…
Cristy, Stage IV
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- November 13, 2011 at 12:59 am
I already had the maintenance conversation with my doctor. It's not an option in the VA system. Next stop after Ipi, Zelboraf. And I am not too anxious to start Zelboraf considering all of the bad press it has been getting lately! One day at a time…
Cristy, Stage IV
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- November 13, 2011 at 12:59 am
I already had the maintenance conversation with my doctor. It's not an option in the VA system. Next stop after Ipi, Zelboraf. And I am not too anxious to start Zelboraf considering all of the bad press it has been getting lately! One day at a time…
Cristy, Stage IV
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- November 13, 2011 at 2:55 am
This issue here is about what has been proven and what is/will be approved by the FDA. The only approved use of "ipi" is the 3 mg/kg dosage, with four infusions spaced one month apart.
The higher dosage is showing good numbers, but the studies are not complete. Also, some doctors are seeing good results with a re-induction–another round of ipi if tumors initially responded then started to regress. Again, not enough data.
These approaches are available through trials, if slots are still open. I don't think, though, that any insurance company will cover the cost of additional drug or maintenance schedules or even re-induction unless/until the FDA grants a revised label covering these kinds of approaches.
I would not be surprised to see the company come back and ask for a revision to the higher dosage, but they need the studies to mature more.
Even with the lower doses, they have seen a fairly impressive "tail:"–a group of patients who continue to respond long after the infusions are given.
Tim–MRF
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- November 13, 2011 at 2:55 am
This issue here is about what has been proven and what is/will be approved by the FDA. The only approved use of "ipi" is the 3 mg/kg dosage, with four infusions spaced one month apart.
The higher dosage is showing good numbers, but the studies are not complete. Also, some doctors are seeing good results with a re-induction–another round of ipi if tumors initially responded then started to regress. Again, not enough data.
These approaches are available through trials, if slots are still open. I don't think, though, that any insurance company will cover the cost of additional drug or maintenance schedules or even re-induction unless/until the FDA grants a revised label covering these kinds of approaches.
I would not be surprised to see the company come back and ask for a revision to the higher dosage, but they need the studies to mature more.
Even with the lower doses, they have seen a fairly impressive "tail:"–a group of patients who continue to respond long after the infusions are given.
Tim–MRF
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- November 13, 2011 at 5:31 pm
Hi Lynn,
When I spoke to Dr. Wolchuk about reinduction, he said there wasn't evidence to support it. It sounds like that's not the case any more.
As one for whom the jury is out as to whether the ipi helped me at all, I would love to see some sort of re-induction regimin.
thanks for all your posts!
karen
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- November 13, 2011 at 5:31 pm
Hi Lynn,
When I spoke to Dr. Wolchuk about reinduction, he said there wasn't evidence to support it. It sounds like that's not the case any more.
As one for whom the jury is out as to whether the ipi helped me at all, I would love to see some sort of re-induction regimin.
thanks for all your posts!
karen
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- November 13, 2011 at 11:32 pm
I have it on the video …I was told I shouldn't post it due to copyright or something, so I won't. No they said the 10 mg is up in the air and they will use it once its been estabished. And they also talked about reinduction if they had previously responded…the symposium was for doctors and researcher…not me lol. I know what I heard.
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- November 13, 2011 at 11:32 pm
I have it on the video …I was told I shouldn't post it due to copyright or something, so I won't. No they said the 10 mg is up in the air and they will use it once its been estabished. And they also talked about reinduction if they had previously responded…the symposium was for doctors and researcher…not me lol. I know what I heard.
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- November 13, 2011 at 11:32 pm
I have it on the video …I was told I shouldn't post it due to copyright or something, so I won't. No they said the 10 mg is up in the air and they will use it once its been estabished. And they also talked about reinduction if they had previously responded…the symposium was for doctors and researcher…not me lol. I know what I heard.
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- November 13, 2011 at 5:31 pm
Hi Lynn,
When I spoke to Dr. Wolchuk about reinduction, he said there wasn't evidence to support it. It sounds like that's not the case any more.
As one for whom the jury is out as to whether the ipi helped me at all, I would love to see some sort of re-induction regimin.
thanks for all your posts!
karen
-
- November 13, 2011 at 2:55 am
This issue here is about what has been proven and what is/will be approved by the FDA. The only approved use of "ipi" is the 3 mg/kg dosage, with four infusions spaced one month apart.
The higher dosage is showing good numbers, but the studies are not complete. Also, some doctors are seeing good results with a re-induction–another round of ipi if tumors initially responded then started to regress. Again, not enough data.
These approaches are available through trials, if slots are still open. I don't think, though, that any insurance company will cover the cost of additional drug or maintenance schedules or even re-induction unless/until the FDA grants a revised label covering these kinds of approaches.
I would not be surprised to see the company come back and ask for a revision to the higher dosage, but they need the studies to mature more.
Even with the lower doses, they have seen a fairly impressive "tail:"–a group of patients who continue to respond long after the infusions are given.
Tim–MRF
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- November 13, 2011 at 12:37 am
I agree Christy. If they are considering changing it, then what happens to the rest of us who've been doing 3mg??? I also know that if they start doing maintenance shots, you better believe I'll be requesting that as well and I know you would too.
One thing I'm also confused about and maybe it's just a typo – after 3-4 treatments "a patient" had continued regression long after the 24 week scan. This to me sounds like 1 patient. At my 12 week scan, I had 50% regression, so I"m only hoping that it will continue to shrink and that many other people experienced this.
What I'm starting to believe and I'm not even sure if Dr's are aware of this, but I think that finishing after 4 infusions is not enough. I believe if maintenace continues every 3 months, cancer may continue to shrink or disappear. I got 2 new brain mets while getting great success from this drug, so I often wonder, if they kept giving me the drug, if it would eventually shrink or go away? Take for example Gene S. His tumours are still shrinking and disappearing and he's getting the maintenance from this drug as well as GM-SCF. What if he had stopped the drug completely after 4 shots? Our warrior – Jerry from Cap Cod (I think) also received maintenance shots and both lung and brain mets disappeared long after the 24 week scan.
I'll be having a huge conversation with my Dr. about this. π
Thanks so much for posting this Lynn and giving us all kinds of info π
Lisa
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- November 13, 2011 at 12:37 am
I agree Christy. If they are considering changing it, then what happens to the rest of us who've been doing 3mg??? I also know that if they start doing maintenance shots, you better believe I'll be requesting that as well and I know you would too.
One thing I'm also confused about and maybe it's just a typo – after 3-4 treatments "a patient" had continued regression long after the 24 week scan. This to me sounds like 1 patient. At my 12 week scan, I had 50% regression, so I"m only hoping that it will continue to shrink and that many other people experienced this.
What I'm starting to believe and I'm not even sure if Dr's are aware of this, but I think that finishing after 4 infusions is not enough. I believe if maintenace continues every 3 months, cancer may continue to shrink or disappear. I got 2 new brain mets while getting great success from this drug, so I often wonder, if they kept giving me the drug, if it would eventually shrink or go away? Take for example Gene S. His tumours are still shrinking and disappearing and he's getting the maintenance from this drug as well as GM-SCF. What if he had stopped the drug completely after 4 shots? Our warrior – Jerry from Cap Cod (I think) also received maintenance shots and both lung and brain mets disappeared long after the 24 week scan.
I'll be having a huge conversation with my Dr. about this. π
Thanks so much for posting this Lynn and giving us all kinds of info π
Lisa
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- November 13, 2011 at 12:01 am
Wow, I get 3mg per dose for a total of 12 mg. That is a HUGE difference from a total of 40mg. If 10mg. is considered the dose that is most effective, then it almost seems like a waste of time, money, and possibly life to be on the 3mg. I hope I am missing something here…
Thanks for scooping the seminars, Lynn!
Cristy, Stage IV
-
- November 13, 2011 at 12:01 am
Wow, I get 3mg per dose for a total of 12 mg. That is a HUGE difference from a total of 40mg. If 10mg. is considered the dose that is most effective, then it almost seems like a waste of time, money, and possibly life to be on the 3mg. I hope I am missing something here…
Thanks for scooping the seminars, Lynn!
Cristy, Stage IV
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- November 13, 2011 at 8:08 pm
Hi Lynn,
Thank you for sharing all this information. I wonder are there new results that 10mg is showing better response than the current 3mg dosage? I thought that the last study showed that 10mg had more severe side effects with no greater benefits. This is definitely of interest for those who are currently on IPI and are not showing response or mixed response.
Thank you. Chau
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- November 13, 2011 at 8:08 pm
Hi Lynn,
Thank you for sharing all this information. I wonder are there new results that 10mg is showing better response than the current 3mg dosage? I thought that the last study showed that 10mg had more severe side effects with no greater benefits. This is definitely of interest for those who are currently on IPI and are not showing response or mixed response.
Thank you. Chau
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- November 13, 2011 at 8:08 pm
Hi Lynn,
Thank you for sharing all this information. I wonder are there new results that 10mg is showing better response than the current 3mg dosage? I thought that the last study showed that 10mg had more severe side effects with no greater benefits. This is definitely of interest for those who are currently on IPI and are not showing response or mixed response.
Thank you. Chau
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- November 13, 2011 at 11:39 pm
yes they did talk about the added side effects as well…I don't know much about the side effects or IPI for that matter…I am a anti pd 1 muppet…its just what they talked about concerning ipi and I thought I would share it. I believe they have to test it somehow and I can't remember if they said they woulddo another trial or not…I don't think they need to…they said something like that… will need to playthe video again and listen to it. I wonder if its still a copyright violation if I just use the sound :o). My friend at ICAN is also an attorney and she said I had to be very careful. The partial abstracts were handouts and they were credited correctly but if I was to use the video I could get into a deep doo doo mess.
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- November 14, 2011 at 12:02 am
Hi Lynn,
We appreciate you sharing what was discussed, it gives us a heads up as to what the experts are thinking and the direction they may be going with these new treatments. So thanks, we dont want you to get in trouble with posting copyright materials.
Thanks, Chau
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- November 14, 2011 at 6:52 pm
Hi Lynn,
I agree with Chau – thanks so much for sharing everything with us.
When I met with my clinical nurse today, she told me that since I responded to ipi, that I would be allowed to take it again, if I should progress. She said maintenance doses wern't available both in the U.S. and Canada, but it was going to be used again on people who responded. Exactly what you had heard π
Thanks,
Lisa
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- November 14, 2011 at 6:52 pm
Hi Lynn,
I agree with Chau – thanks so much for sharing everything with us.
When I met with my clinical nurse today, she told me that since I responded to ipi, that I would be allowed to take it again, if I should progress. She said maintenance doses wern't available both in the U.S. and Canada, but it was going to be used again on people who responded. Exactly what you had heard π
Thanks,
Lisa
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- November 14, 2011 at 6:52 pm
Hi Lynn,
I agree with Chau – thanks so much for sharing everything with us.
When I met with my clinical nurse today, she told me that since I responded to ipi, that I would be allowed to take it again, if I should progress. She said maintenance doses wern't available both in the U.S. and Canada, but it was going to be used again on people who responded. Exactly what you had heard π
Thanks,
Lisa
-
- November 14, 2011 at 12:02 am
Hi Lynn,
We appreciate you sharing what was discussed, it gives us a heads up as to what the experts are thinking and the direction they may be going with these new treatments. So thanks, we dont want you to get in trouble with posting copyright materials.
Thanks, Chau
-
- November 14, 2011 at 12:02 am
Hi Lynn,
We appreciate you sharing what was discussed, it gives us a heads up as to what the experts are thinking and the direction they may be going with these new treatments. So thanks, we dont want you to get in trouble with posting copyright materials.
Thanks, Chau
-
- November 13, 2011 at 11:39 pm
yes they did talk about the added side effects as well…I don't know much about the side effects or IPI for that matter…I am a anti pd 1 muppet…its just what they talked about concerning ipi and I thought I would share it. I believe they have to test it somehow and I can't remember if they said they woulddo another trial or not…I don't think they need to…they said something like that… will need to playthe video again and listen to it. I wonder if its still a copyright violation if I just use the sound :o). My friend at ICAN is also an attorney and she said I had to be very careful. The partial abstracts were handouts and they were credited correctly but if I was to use the video I could get into a deep doo doo mess.
-
- November 13, 2011 at 11:39 pm
yes they did talk about the added side effects as well…I don't know much about the side effects or IPI for that matter…I am a anti pd 1 muppet…its just what they talked about concerning ipi and I thought I would share it. I believe they have to test it somehow and I can't remember if they said they woulddo another trial or not…I don't think they need to…they said something like that… will need to playthe video again and listen to it. I wonder if its still a copyright violation if I just use the sound :o). My friend at ICAN is also an attorney and she said I had to be very careful. The partial abstracts were handouts and they were credited correctly but if I was to use the video I could get into a deep doo doo mess.
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