I forgot IPI!

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. 🙂

Thanks so much for posting this Lynn and giving us all kinds of info 😉

Lisa

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

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

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

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

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

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

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

Hi Lynn…not doubting you at all!  I guess maybe it's a risk I never thought about, taking a drug just after it was FDA approved.  It will be very interesting to see what happens next.

Take care,

karen

Hi Lynn…not doubting you at all!  I guess maybe it's a risk I never thought about, taking a drug just after it was FDA approved.  It will be very interesting to see what happens next.

Take care,

karen

Hi Lynn…not doubting you at all!  I guess maybe it's a risk I never thought about, taking a drug just after it was FDA approved.  It will be very interesting to see what happens next.

Take care,

karen

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

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

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. 🙂

Thanks so much for posting this Lynn and giving us all kinds of info 😉

Lisa

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. 🙂

Thanks so much for posting this Lynn and giving us all kinds of info 😉

Lisa

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 

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 🙂

Thanks,

Lisa

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 🙂

Thanks,

Lisa

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 🙂

Thanks,

Lisa

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 

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