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- This topic has 27 replies, 6 voices, and was last updated 8 years, 3 months ago by
Scooby123.
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- February 7, 2016 at 6:29 pm
Hi all,
I would like to know if now the combo treatment is available in some country's , if you have had ippi would you not get the combo ipp – nivolumab . We have not approved combo in UK as yet I think September I believe correct me anyone if I am wrong . But was wondering now that combinding treatments is better would you not get it if you had it on its owne. Plus you would have had to respond to the treatment as well otherwise they would be no point giving you together if you have not responded to one. I am not sure how it all works but would love some feedback from anyone who does
love and prayers to all us fighting and our caregivers
scooby123❤️
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- February 7, 2016 at 7:47 pm
Hey Scooby,
This is sort of new territory for everyone so the jury is still out. There are certainly folks out there who were on an anti-PD1 product, but did not seem to be responding, whose docs elected to add ipi. Additionally, there are those who already had ipi and take an anti-PD1 product after that…as a sequential process…rather than combo one. After all, that was the requirement for getting nivo/Opdivo in the US until just a bit ago. And many folks do respond to that order of administrataion. And…I am sure there are those on ipi…who if not responding…docs have added nivo. However, for all these scenarios there is not too much acutally KNOWN about how that will all play out. More answers will probably come out at ASCO this spring. Here is some data on the topic (even if tangential) that I do have:
For what it's worth. Yours, celeste
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- February 7, 2016 at 7:47 pm
Hey Scooby,
This is sort of new territory for everyone so the jury is still out. There are certainly folks out there who were on an anti-PD1 product, but did not seem to be responding, whose docs elected to add ipi. Additionally, there are those who already had ipi and take an anti-PD1 product after that…as a sequential process…rather than combo one. After all, that was the requirement for getting nivo/Opdivo in the US until just a bit ago. And many folks do respond to that order of administrataion. And…I am sure there are those on ipi…who if not responding…docs have added nivo. However, for all these scenarios there is not too much acutally KNOWN about how that will all play out. More answers will probably come out at ASCO this spring. Here is some data on the topic (even if tangential) that I do have:
For what it's worth. Yours, celeste
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- February 7, 2016 at 7:47 pm
Hey Scooby,
This is sort of new territory for everyone so the jury is still out. There are certainly folks out there who were on an anti-PD1 product, but did not seem to be responding, whose docs elected to add ipi. Additionally, there are those who already had ipi and take an anti-PD1 product after that…as a sequential process…rather than combo one. After all, that was the requirement for getting nivo/Opdivo in the US until just a bit ago. And many folks do respond to that order of administrataion. And…I am sure there are those on ipi…who if not responding…docs have added nivo. However, for all these scenarios there is not too much acutally KNOWN about how that will all play out. More answers will probably come out at ASCO this spring. Here is some data on the topic (even if tangential) that I do have:
For what it's worth. Yours, celeste
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- February 7, 2016 at 8:02 pm
Hi
just to clarify, NICE are scheduled to report in September 2016 on whether or not the ipi / nivolumab combo is seen as cost effective versus alternatives. It is possible that they will rule negatively however, based on the data available my view ( and hope) is they will approve it, and possibly before September. Have you checked if there are any trials of the combo in the UK ? Last year I tried to get on a couple of adjuvant trials but was declined because of my vaccine treatment in the 1990s. Best of luck. Mel J
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- February 7, 2016 at 9:30 pm
Hi melj
I have not seen any trials of the combo in UK as yet will ask next week when I see my doc, but not sure if I would qualify if had a dose of ippi even thou for now has worked. It's crazy you would think if you taken ippi with minor reaction and worked then going on the combo would be a better chance of getting more on top of this disease. I some times wounder how they justify who get what if some thing works for one then give it too them.
Sorry it really gets too me all this if you had this and that you cannot have this despite the chance of better outcome. Plus like you if you have done a trial then you declined cus of doing that one.
Will let you know how it goes lots of questions next Thursday for me.
scooby123❤️
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- February 7, 2016 at 9:30 pm
Hi melj
I have not seen any trials of the combo in UK as yet will ask next week when I see my doc, but not sure if I would qualify if had a dose of ippi even thou for now has worked. It's crazy you would think if you taken ippi with minor reaction and worked then going on the combo would be a better chance of getting more on top of this disease. I some times wounder how they justify who get what if some thing works for one then give it too them.
Sorry it really gets too me all this if you had this and that you cannot have this despite the chance of better outcome. Plus like you if you have done a trial then you declined cus of doing that one.
Will let you know how it goes lots of questions next Thursday for me.
scooby123❤️
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- February 7, 2016 at 9:30 pm
Hi melj
I have not seen any trials of the combo in UK as yet will ask next week when I see my doc, but not sure if I would qualify if had a dose of ippi even thou for now has worked. It's crazy you would think if you taken ippi with minor reaction and worked then going on the combo would be a better chance of getting more on top of this disease. I some times wounder how they justify who get what if some thing works for one then give it too them.
Sorry it really gets too me all this if you had this and that you cannot have this despite the chance of better outcome. Plus like you if you have done a trial then you declined cus of doing that one.
Will let you know how it goes lots of questions next Thursday for me.
scooby123❤️
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- February 7, 2016 at 8:02 pm
Hi
just to clarify, NICE are scheduled to report in September 2016 on whether or not the ipi / nivolumab combo is seen as cost effective versus alternatives. It is possible that they will rule negatively however, based on the data available my view ( and hope) is they will approve it, and possibly before September. Have you checked if there are any trials of the combo in the UK ? Last year I tried to get on a couple of adjuvant trials but was declined because of my vaccine treatment in the 1990s. Best of luck. Mel J
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- February 7, 2016 at 8:02 pm
Hi
just to clarify, NICE are scheduled to report in September 2016 on whether or not the ipi / nivolumab combo is seen as cost effective versus alternatives. It is possible that they will rule negatively however, based on the data available my view ( and hope) is they will approve it, and possibly before September. Have you checked if there are any trials of the combo in the UK ? Last year I tried to get on a couple of adjuvant trials but was declined because of my vaccine treatment in the 1990s. Best of luck. Mel J
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- February 7, 2016 at 11:24 pm
I am in the UK being treated on the NHS. For NICE to approve a treatment for use by the NHS there has to be evidence that it is effective, cost effective and 'better' or cheaper than existing treatments.
I cannot see the NHS funding an Ipi-anything combination for patients who have already tried Ipi. Ipi is expensive (£80,000 per patient even at 3mg/kg and only four doses) and has many side effects. I think the only reason it has approval at all is that a minority of patients do so well on it
For the patients who have tried Ipi, I do not think there is enough evidence that more Ipi helps for NICE to even consider it.
If it is decided that the combination is better, I think that will become the first immunotherapy offered but only to paients who have not tried Ipi.
I had Ipi last April/June (2015) I am a responder. My tumours have shrunk and cannot now be seen on a CT scan, Now it is wait and see.
Maybe I will make it to three years without the tumours growing again or new ones appearing. The evidence says that if you make it to three years, you will make it to ten (maybe even longer but there is no data).
If the tumours start coming back, I hope that I will be able to try one of the anti-PD-1 immunotherapy treatments (like nivolumab but probably pembrolizumab), I know that pembrolizumab costs £63,000 per year and that the commitment is open-ended (every 3 weeks for goodness knows how long).
Or, who knows, there may be something else that has been approved by NICE by then.
At the moment I am grateful to be in the 15% who are ipi responders. Having tumours that are shrinking is better than having ones that are growing!
My anterior pituitary has packed up (side effect of the Ipi) but, again, I believe that having those tumours shrinking is worth it.
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- February 7, 2016 at 11:24 pm
I am in the UK being treated on the NHS. For NICE to approve a treatment for use by the NHS there has to be evidence that it is effective, cost effective and 'better' or cheaper than existing treatments.
I cannot see the NHS funding an Ipi-anything combination for patients who have already tried Ipi. Ipi is expensive (£80,000 per patient even at 3mg/kg and only four doses) and has many side effects. I think the only reason it has approval at all is that a minority of patients do so well on it
For the patients who have tried Ipi, I do not think there is enough evidence that more Ipi helps for NICE to even consider it.
If it is decided that the combination is better, I think that will become the first immunotherapy offered but only to paients who have not tried Ipi.
I had Ipi last April/June (2015) I am a responder. My tumours have shrunk and cannot now be seen on a CT scan, Now it is wait and see.
Maybe I will make it to three years without the tumours growing again or new ones appearing. The evidence says that if you make it to three years, you will make it to ten (maybe even longer but there is no data).
If the tumours start coming back, I hope that I will be able to try one of the anti-PD-1 immunotherapy treatments (like nivolumab but probably pembrolizumab), I know that pembrolizumab costs £63,000 per year and that the commitment is open-ended (every 3 weeks for goodness knows how long).
Or, who knows, there may be something else that has been approved by NICE by then.
At the moment I am grateful to be in the 15% who are ipi responders. Having tumours that are shrinking is better than having ones that are growing!
My anterior pituitary has packed up (side effect of the Ipi) but, again, I believe that having those tumours shrinking is worth it.
-
- February 7, 2016 at 11:24 pm
I am in the UK being treated on the NHS. For NICE to approve a treatment for use by the NHS there has to be evidence that it is effective, cost effective and 'better' or cheaper than existing treatments.
I cannot see the NHS funding an Ipi-anything combination for patients who have already tried Ipi. Ipi is expensive (£80,000 per patient even at 3mg/kg and only four doses) and has many side effects. I think the only reason it has approval at all is that a minority of patients do so well on it
For the patients who have tried Ipi, I do not think there is enough evidence that more Ipi helps for NICE to even consider it.
If it is decided that the combination is better, I think that will become the first immunotherapy offered but only to paients who have not tried Ipi.
I had Ipi last April/June (2015) I am a responder. My tumours have shrunk and cannot now be seen on a CT scan, Now it is wait and see.
Maybe I will make it to three years without the tumours growing again or new ones appearing. The evidence says that if you make it to three years, you will make it to ten (maybe even longer but there is no data).
If the tumours start coming back, I hope that I will be able to try one of the anti-PD-1 immunotherapy treatments (like nivolumab but probably pembrolizumab), I know that pembrolizumab costs £63,000 per year and that the commitment is open-ended (every 3 weeks for goodness knows how long).
Or, who knows, there may be something else that has been approved by NICE by then.
At the moment I am grateful to be in the 15% who are ipi responders. Having tumours that are shrinking is better than having ones that are growing!
My anterior pituitary has packed up (side effect of the Ipi) but, again, I believe that having those tumours shrinking is worth it.
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- February 8, 2016 at 4:07 am
Hi Moira M, there is data about ipi going back at least 10 years. Look up Ipi and Dr.Weber or Dr.Jedd Wolchok and I think you should be able to find data from research that they have been involved in. There is also data from checkmate 69 from last years ASCO which supports the use of the combination. The % of one year survival was around 89% and the two years survival is around 79%. I am surprised that you can't get access to the drug combination in expanded access from Bristol Myer Squibb. I thought that in the U.K. you had universal health care, like we do in Canada where drug cost are covered?
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- February 8, 2016 at 4:07 am
Hi Moira M, there is data about ipi going back at least 10 years. Look up Ipi and Dr.Weber or Dr.Jedd Wolchok and I think you should be able to find data from research that they have been involved in. There is also data from checkmate 69 from last years ASCO which supports the use of the combination. The % of one year survival was around 89% and the two years survival is around 79%. I am surprised that you can't get access to the drug combination in expanded access from Bristol Myer Squibb. I thought that in the U.K. you had universal health care, like we do in Canada where drug cost are covered?
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- February 8, 2016 at 7:30 am
Yes, drug costs are covered. I did not pay the £80,000 for my Ipi. However, to my knowledge, the NHS only offers treatments approved by NICE. although there is also something called the Cancer Drug Fund (or similar).
Maybe the Cancer Drug Fund is funding the combination in some trials in the UK? I am not sure. I started my Ipi in April 2015 and the combination was not offered to me then. The situation is moving on so quickly!
I think NICE will be deciding ont he combination this year. If it is that clearcut, the combination will probably be put before Ipi in the list of what is available, which will probably knock Ipi off the llst for most patients. If they have tried the combination, there probably will be no point of trying Ipi on its own.
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- February 8, 2016 at 7:30 am
Yes, drug costs are covered. I did not pay the £80,000 for my Ipi. However, to my knowledge, the NHS only offers treatments approved by NICE. although there is also something called the Cancer Drug Fund (or similar).
Maybe the Cancer Drug Fund is funding the combination in some trials in the UK? I am not sure. I started my Ipi in April 2015 and the combination was not offered to me then. The situation is moving on so quickly!
I think NICE will be deciding ont he combination this year. If it is that clearcut, the combination will probably be put before Ipi in the list of what is available, which will probably knock Ipi off the llst for most patients. If they have tried the combination, there probably will be no point of trying Ipi on its own.
-
- February 8, 2016 at 7:30 am
Yes, drug costs are covered. I did not pay the £80,000 for my Ipi. However, to my knowledge, the NHS only offers treatments approved by NICE. although there is also something called the Cancer Drug Fund (or similar).
Maybe the Cancer Drug Fund is funding the combination in some trials in the UK? I am not sure. I started my Ipi in April 2015 and the combination was not offered to me then. The situation is moving on so quickly!
I think NICE will be deciding ont he combination this year. If it is that clearcut, the combination will probably be put before Ipi in the list of what is available, which will probably knock Ipi off the llst for most patients. If they have tried the combination, there probably will be no point of trying Ipi on its own.
-
- February 8, 2016 at 4:07 am
Hi Moira M, there is data about ipi going back at least 10 years. Look up Ipi and Dr.Weber or Dr.Jedd Wolchok and I think you should be able to find data from research that they have been involved in. There is also data from checkmate 69 from last years ASCO which supports the use of the combination. The % of one year survival was around 89% and the two years survival is around 79%. I am surprised that you can't get access to the drug combination in expanded access from Bristol Myer Squibb. I thought that in the U.K. you had universal health care, like we do in Canada where drug cost are covered?
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- February 8, 2016 at 4:48 pm
My husband is Brit, we live here in the states. His Oncologist put him on Opdivo only. Said the combo is too toxic. I guess it depends on your situation and Oncologist recommendation. I saw articles that things are coming your way for the treatments. Best of luck love and prayers.
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- February 8, 2016 at 4:48 pm
My husband is Brit, we live here in the states. His Oncologist put him on Opdivo only. Said the combo is too toxic. I guess it depends on your situation and Oncologist recommendation. I saw articles that things are coming your way for the treatments. Best of luck love and prayers.
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- February 8, 2016 at 4:48 pm
My husband is Brit, we live here in the states. His Oncologist put him on Opdivo only. Said the combo is too toxic. I guess it depends on your situation and Oncologist recommendation. I saw articles that things are coming your way for the treatments. Best of luck love and prayers.
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