VERY IMPORTANT PUBLICATION– READ THIS!!

POW:  this wasnt worth all CAPS at all.  With a few exceptions, it is a prejudiced doc group who still uses and promotes the use of interferon and biochemo/IL2.  All old stuff that doesn't provide overall survival benefit.  For PD1 to be left out is a terrible injustice.

POW:  this wasnt worth all CAPS at all.  With a few exceptions, it is a prejudiced doc group who still uses and promotes the use of interferon and biochemo/IL2.  All old stuff that doesn't provide overall survival benefit.  For PD1 to be left out is a terrible injustice.

POW:  this wasnt worth all CAPS at all.  With a few exceptions, it is a prejudiced doc group who still uses and promotes the use of interferon and biochemo/IL2.  All old stuff that doesn't provide overall survival benefit.  For PD1 to be left out is a terrible injustice.

Sorry but you are mistaken.  This article is all OLD news, very old.  Nothing worth reading. 

I cannnot see how one can say that a new statement by some of the worlds leading Melanoma Oncologists/Researchers is not relevant. The fact that it was recently produced and was published this week does not make it an old outdated document. It is an important guide as to what patients can expect their Oncologists to be looking at and likely going by to determine how to proceed with their treatment.

POW did a good job of summarizing the basics of the new article (Published 27 Aug 2013) from the expert panel of 30 nationally known melanoma oncologists (Kaufman, Kirkwood, Agarwala, Hodi, Pavlik, Sosman, etc.) from 23 of the most prominent melanoma specialty clinics in the country including Rush, Dana Farber, Moffitt, John Wayne, etc).

One should read the entire article and review each of the drawings/figures to best understand the guidance provided therein.

I will also note that IL-2 has provided an extension of survival for 20-22% of the overal melanoma patient population. It has provided a lifetime cure for more to date than any other treatment. It has delayed the end for many others so that we could reach another treatment. When the markers are determined as who shsould be cherry picked for each treatment the success rate of each treatment will further improve.

Many patients do not go to Major centers that have Clinical trials, it is also noted that clinical trials are discussed as a first line treatment in some cases. (Would include PD-1 and other likely candidates in development.)

I cannnot see how one can say that a new statement by some of the worlds leading Melanoma Oncologists/Researchers is not relevant. The fact that it was recently produced and was published this week does not make it an old outdated document. It is an important guide as to what patients can expect their Oncologists to be looking at and likely going by to determine how to proceed with their treatment.

POW did a good job of summarizing the basics of the new article (Published 27 Aug 2013) from the expert panel of 30 nationally known melanoma oncologists (Kaufman, Kirkwood, Agarwala, Hodi, Pavlik, Sosman, etc.) from 23 of the most prominent melanoma specialty clinics in the country including Rush, Dana Farber, Moffitt, John Wayne, etc).

One should read the entire article and review each of the drawings/figures to best understand the guidance provided therein.

I will also note that IL-2 has provided an extension of survival for 20-22% of the overal melanoma patient population. It has provided a lifetime cure for more to date than any other treatment. It has delayed the end for many others so that we could reach another treatment. When the markers are determined as who shsould be cherry picked for each treatment the success rate of each treatment will further improve.

Many patients do not go to Major centers that have Clinical trials, it is also noted that clinical trials are discussed as a first line treatment in some cases. (Would include PD-1 and other likely candidates in development.)

I cannnot see how one can say that a new statement by some of the worlds leading Melanoma Oncologists/Researchers is not relevant. The fact that it was recently produced and was published this week does not make it an old outdated document. It is an important guide as to what patients can expect their Oncologists to be looking at and likely going by to determine how to proceed with their treatment.

POW did a good job of summarizing the basics of the new article (Published 27 Aug 2013) from the expert panel of 30 nationally known melanoma oncologists (Kaufman, Kirkwood, Agarwala, Hodi, Pavlik, Sosman, etc.) from 23 of the most prominent melanoma specialty clinics in the country including Rush, Dana Farber, Moffitt, John Wayne, etc).

One should read the entire article and review each of the drawings/figures to best understand the guidance provided therein.

I will also note that IL-2 has provided an extension of survival for 20-22% of the overal melanoma patient population. It has provided a lifetime cure for more to date than any other treatment. It has delayed the end for many others so that we could reach another treatment. When the markers are determined as who shsould be cherry picked for each treatment the success rate of each treatment will further improve.

Many patients do not go to Major centers that have Clinical trials, it is also noted that clinical trials are discussed as a first line treatment in some cases. (Would include PD-1 and other likely candidates in development.)

Sorry, don't consider those docs as the tops.  The team at Sloan Kettering are tops in the world and they do not prescribe interferon or IL2.   The MAYO Clinic does not prescribe either of these drugs either and they are tops in the world.   This isn't a balanced report at all.  And it just has nothing new to offer.

Dear POW and Jerry,
Thanks for posting this publication. I feel very fortunate to have you both here for your scientific expertise, empathy and friendship.
All the best,
Karen

Sloan Kettering Hospital does not use IL-2 for a few reasons. Instead, they use Yale-New Haven Cancer Center, where Dr. Mario Sznol and his team are tops. One of the reasons is lack of space.

Well said, Karen!!! Thank you POW and
Jerry!
Wishing you all well,
Nancy

I am a patient at Sloan and they told me they don't use IL2 because it is too toxic and response rate is too low.  It had nothing to do with hospital space.  I think the team there is much better than most of those in this study.

POW and Jerry,

Thanks for posting this.  I missed it when Jerry posted it.  I haven't read it yet but will definitely delve into it when I have time.  I'm very interested in the whole sequencing topic being that I am currently in the Nivo/IPI trial receiving it in the order of Nivo – IPI – Nivo.  Up to this point I have thought that if I need other treatments in the future I would probably save IL-2 as a last resort but I'm not so sure now.  I know IL-2 doesn't have the best response rate but I highly suspect that having it follow Nivo and IPI might result in a much higher success rate.

Brian

P.S. – Folks, it's perfectly fine to have differing opinions.  Sometimes that's what brings out the best points and information.  It would be nice though if people wouldn't do so anonymously.  If you believe something enough to post then you shouldn't have any hesitation about putting your name/username with the post.

POW and Jerry,

Thanks for posting this.  I missed it when Jerry posted it.  I haven't read it yet but will definitely delve into it when I have time.  I'm very interested in the whole sequencing topic being that I am currently in the Nivo/IPI trial receiving it in the order of Nivo – IPI – Nivo.  Up to this point I have thought that if I need other treatments in the future I would probably save IL-2 as a last resort but I'm not so sure now.  I know IL-2 doesn't have the best response rate but I highly suspect that having it follow Nivo and IPI might result in a much higher success rate.

Brian

P.S. – Folks, it's perfectly fine to have differing opinions.  Sometimes that's what brings out the best points and information.  It would be nice though if people wouldn't do so anonymously.  If you believe something enough to post then you shouldn't have any hesitation about putting your name/username with the post.

POW and Jerry,

Thanks for posting this.  I missed it when Jerry posted it.  I haven't read it yet but will definitely delve into it when I have time.  I'm very interested in the whole sequencing topic being that I am currently in the Nivo/IPI trial receiving it in the order of Nivo – IPI – Nivo.  Up to this point I have thought that if I need other treatments in the future I would probably save IL-2 as a last resort but I'm not so sure now.  I know IL-2 doesn't have the best response rate but I highly suspect that having it follow Nivo and IPI might result in a much higher success rate.

Brian

P.S. – Folks, it's perfectly fine to have differing opinions.  Sometimes that's what brings out the best points and information.  It would be nice though if people wouldn't do so anonymously.  If you believe something enough to post then you shouldn't have any hesitation about putting your name/username with the post.

I agree.  Many disagreed with me wanting to try Gleevec and I listened to and researched what they said, then asked my Onc to do what I thought best.  Have no had feelings about those that disagreed with me openly and honestly.  Like many of t hem (But still glad I went my own way!)

My goodness. What a lot of noise about information that is bascially a synopsis of what we all already know. I think part of the contention obviously stems from who was on this panel of “authors” and who was not. Ribas,Wolchok, Weber, Sznol, Toplian, Chapman, Flaherty…just to name a few…are all missing. Additionally…you don’t have to be in this game very long (10 years for me!) to learn that Kirkman hitched his horse to interferon and will NEVER speak against it. Not news. We all knew that. For some, as I noted in a previous post…interferon has proven to be helpful…though clinical benefit…as opposed to a statistical one…remains illusive. IL-2 has certainly helped many. In the current climate of drug development for melanoma it remains to be seen what will happen to ratties like me. I am patient #9 officially (though more likely #4 in reality) of a phase I trial with anti-PD1, first arm! I AM the experiment!! As are many others on this forum and elswhere. Perhaps the most significant quote from the article is: “…reports of a potent abscopal effect when ipi and IL-2 were used after localized radiotherapy, suggesting that combinations of immunotherapy and standard radiation treatment might also be a possibe therapeutic strategy.” In my trial, which required NO BRAIN METS for enrollment…didn’t mean that none of use had had them, though certainly some had not. It did mean, that many of us had had them…but had done away with them with radiation. Interestingly, while some in my trial have relapsed…as of June…NONE of the brain met patients had! Something to think about. And just as importantly….I don’t think anyone should be chastised and banished to twitter because they voice an opinion based on a legitimate question. Is this article “new” news or “old” news? Only ratties like me…and time…will tell.

One more tid-bit: on my last infusion visit to Tampa in June…Dr. Weber noted his OPINION, after having been a presentor and audience member at ASCO, that PERHAPS, anti-PD1 followed by ipi would be the sequencing combo that serves melanoma patients the best. But, even from a leading expert….that remains to be seen.

More of what the folks in Tampa shared is in “gleanings” at the bottome of my blog post on June 11. Celeste

My goodness. What a lot of noise about information that is bascially a synopsis of what we all already know. I think part of the contention obviously stems from who was on this panel of “authors” and who was not. Ribas,Wolchok, Weber, Sznol, Toplian, Chapman, Flaherty…just to name a few…are all missing. Additionally…you don’t have to be in this game very long (10 years for me!) to learn that Kirkman hitched his horse to interferon and will NEVER speak against it. Not news. We all knew that. For some, as I noted in a previous post…interferon has proven to be helpful…though clinical benefit…as opposed to a statistical one…remains illusive. IL-2 has certainly helped many. In the current climate of drug development for melanoma it remains to be seen what will happen to ratties like me. I am patient #9 officially (though more likely #4 in reality) of a phase I trial with anti-PD1, first arm! I AM the experiment!! As are many others on this forum and elswhere. Perhaps the most significant quote from the article is: “…reports of a potent abscopal effect when ipi and IL-2 were used after localized radiotherapy, suggesting that combinations of immunotherapy and standard radiation treatment might also be a possibe therapeutic strategy.” In my trial, which required NO BRAIN METS for enrollment…didn’t mean that none of use had had them, though certainly some had not. It did mean, that many of us had had them…but had done away with them with radiation. Interestingly, while some in my trial have relapsed…as of June…NONE of the brain met patients had! Something to think about. And just as importantly….I don’t think anyone should be chastised and banished to twitter because they voice an opinion based on a legitimate question. Is this article “new” news or “old” news? Only ratties like me…and time…will tell.

One more tid-bit: on my last infusion visit to Tampa in June…Dr. Weber noted his OPINION, after having been a presentor and audience member at ASCO, that PERHAPS, anti-PD1 followed by ipi would be the sequencing combo that serves melanoma patients the best. But, even from a leading expert….that remains to be seen.

More of what the folks in Tampa shared is in “gleanings” at the bottome of my blog post on June 11. Celeste

My goodness. What a lot of noise about information that is bascially a synopsis of what we all already know. I think part of the contention obviously stems from who was on this panel of “authors” and who was not. Ribas,Wolchok, Weber, Sznol, Toplian, Chapman, Flaherty…just to name a few…are all missing. Additionally…you don’t have to be in this game very long (10 years for me!) to learn that Kirkman hitched his horse to interferon and will NEVER speak against it. Not news. We all knew that. For some, as I noted in a previous post…interferon has proven to be helpful…though clinical benefit…as opposed to a statistical one…remains illusive. IL-2 has certainly helped many. In the current climate of drug development for melanoma it remains to be seen what will happen to ratties like me. I am patient #9 officially (though more likely #4 in reality) of a phase I trial with anti-PD1, first arm! I AM the experiment!! As are many others on this forum and elswhere. Perhaps the most significant quote from the article is: “…reports of a potent abscopal effect when ipi and IL-2 were used after localized radiotherapy, suggesting that combinations of immunotherapy and standard radiation treatment might also be a possibe therapeutic strategy.” In my trial, which required NO BRAIN METS for enrollment…didn’t mean that none of use had had them, though certainly some had not. It did mean, that many of us had had them…but had done away with them with radiation. Interestingly, while some in my trial have relapsed…as of June…NONE of the brain met patients had! Something to think about. And just as importantly….I don’t think anyone should be chastised and banished to twitter because they voice an opinion based on a legitimate question. Is this article “new” news or “old” news? Only ratties like me…and time…will tell.

One more tid-bit: on my last infusion visit to Tampa in June…Dr. Weber noted his OPINION, after having been a presentor and audience member at ASCO, that PERHAPS, anti-PD1 followed by ipi would be the sequencing combo that serves melanoma patients the best. But, even from a leading expert….that remains to be seen.

More of what the folks in Tampa shared is in “gleanings” at the bottome of my blog post on June 11. Celeste

Yes POW really wasn't very nice to say that  If she was a true researcher of melanoma she'd know off the bat there was nothing new in that article..  Thanks for an intelligent thoughtful response Celeste.  I guess some feel whatever drug they've chosen is the best and get defensive when newer research shows otherwise.  We all need to embrace new research and treatments and be glad to say goodby to the old toxic ones.  Time will indeed tell for sure.

Yes L, some do think theirs is the only treatment, but some of us think that whatever can help some should be available to them.  I have not said that IL-2 is the best for all, not since the anti-CTLA trials, BRAF trials, etc were starting.  I have said it was more available without one being in a trial, which many of US could not get into.  I have been told on-line by another patient, that I should stop my Gleevec treatment (which is still working after 4 1/2 years on it), fail IPI, just so that I could try to get into a PD-1 trial that is "the only real treatment"!  This type advice I have never given anyone, especially someone who's treatments are preventing growth and spread.  I do recommend knowing what is out there and having an option or two in mind in case they are needed.  I have never been a fan of bio-chem, but know it works for some.  I also have never liked the older  chemotherapies, but again they work for a few and it is an inividual choice as to what one believes is the best for them, not what they believe is the only thing for me.  I don't banish anyone to tweeter, regardless of their misguided attempts to control what others have access to.  Celeste is correct in saying that many of us oldtimers already know much of the info in the articale, and that IL-2 has helped many.  Out of the current approved and near approved treatments I agree with Dr Weber that anti-PD1 followed by ipi might be the sequencing combo that serves a large number of melanoma patients the best, with the least side effects.  We are not at the point of knowing yet.  Again don't throw out all possibilities outside of the one YOOU think is  what everyone should do.

P.S.  POW did not come out either supporting IL-2 as the major treatment or the only treatment, she just reposted the newest guidlines (Aug 2013) that is being provided to Oncologists by representatives of many leading Melanoma Centers and their reasoning as to  why they believe this is the way to go.  Why is this a reason for attack?  It is not!

Sorry but you are mistaken.  This article is all OLD news, very old.  Nothing worth reading. 

Sorry but you are mistaken.  This article is all OLD news, very old.  Nothing worth reading. 

POW, I find your reply to "anonymous" very misguided.  He or she may well be a melanoma patient, unlike yourself, and if this is the case then their opinion would certainly not be "baseless" nor do they need telling what are important issues for melanoma patients.  He or she may very well be anxious or depressed from the psychological and physical effects of actually having melanoma and doesn't need to be told to stop posting on a site that, at the end of the day, should be primarilly of help to those who are the patients.

POW, I find your reply to "anonymous" very misguided.  He or she may well be a melanoma patient, unlike yourself, and if this is the case then their opinion would certainly not be "baseless" nor do they need telling what are important issues for melanoma patients.  He or she may very well be anxious or depressed from the psychological and physical effects of actually having melanoma and doesn't need to be told to stop posting on a site that, at the end of the day, should be primarilly of help to those who are the patients.

POW, I find your reply to "anonymous" very misguided.  He or she may well be a melanoma patient, unlike yourself, and if this is the case then their opinion would certainly not be "baseless" nor do they need telling what are important issues for melanoma patients.  He or she may very well be anxious or depressed from the psychological and physical effects of actually having melanoma and doesn't need to be told to stop posting on a site that, at the end of the day, should be primarilly of help to those who are the patients.

Well said, Karen!!! Thank you POW and
Jerry!
Wishing you all well,
Nancy

Well said, Karen!!! Thank you POW and
Jerry!
Wishing you all well,
Nancy

I am a patient at Sloan and they told me they don't use IL2 because it is too toxic and response rate is too low.  It had nothing to do with hospital space.  I think the team there is much better than most of those in this study.

I am a patient at Sloan and they told me they don't use IL2 because it is too toxic and response rate is too low.  It had nothing to do with hospital space.  I think the team there is much better than most of those in this study.

I agree.  Many disagreed with me wanting to try Gleevec and I listened to and researched what they said, then asked my Onc to do what I thought best.  Have no had feelings about those that disagreed with me openly and honestly.  Like many of t hem (But still glad I went my own way!)

I agree.  Many disagreed with me wanting to try Gleevec and I listened to and researched what they said, then asked my Onc to do what I thought best.  Have no had feelings about those that disagreed with me openly and honestly.  Like many of t hem (But still glad I went my own way!)

Yes POW really wasn't very nice to say that  If she was a true researcher of melanoma she'd know off the bat there was nothing new in that article..  Thanks for an intelligent thoughtful response Celeste.  I guess some feel whatever drug they've chosen is the best and get defensive when newer research shows otherwise.  We all need to embrace new research and treatments and be glad to say goodby to the old toxic ones.  Time will indeed tell for sure.

Yes POW really wasn't very nice to say that  If she was a true researcher of melanoma she'd know off the bat there was nothing new in that article..  Thanks for an intelligent thoughtful response Celeste.  I guess some feel whatever drug they've chosen is the best and get defensive when newer research shows otherwise.  We all need to embrace new research and treatments and be glad to say goodby to the old toxic ones.  Time will indeed tell for sure.

Yes L, some do think theirs is the only treatment, but some of us think that whatever can help some should be available to them.  I have not said that IL-2 is the best for all, not since the anti-CTLA trials, BRAF trials, etc were starting.  I have said it was more available without one being in a trial, which many of US could not get into.  I have been told on-line by another patient, that I should stop my Gleevec treatment (which is still working after 4 1/2 years on it), fail IPI, just so that I could try to get into a PD-1 trial that is "the only real treatment"!  This type advice I have never given anyone, especially someone who's treatments are preventing growth and spread.  I do recommend knowing what is out there and having an option or two in mind in case they are needed.  I have never been a fan of bio-chem, but know it works for some.  I also have never liked the older  chemotherapies, but again they work for a few and it is an inividual choice as to what one believes is the best for them, not what they believe is the only thing for me.  I don't banish anyone to tweeter, regardless of their misguided attempts to control what others have access to.  Celeste is correct in saying that many of us oldtimers already know much of the info in the articale, and that IL-2 has helped many.  Out of the current approved and near approved treatments I agree with Dr Weber that anti-PD1 followed by ipi might be the sequencing combo that serves a large number of melanoma patients the best, with the least side effects.  We are not at the point of knowing yet.  Again don't throw out all possibilities outside of the one YOOU think is  what everyone should do.

Yes L, some do think theirs is the only treatment, but some of us think that whatever can help some should be available to them.  I have not said that IL-2 is the best for all, not since the anti-CTLA trials, BRAF trials, etc were starting.  I have said it was more available without one being in a trial, which many of US could not get into.  I have been told on-line by another patient, that I should stop my Gleevec treatment (which is still working after 4 1/2 years on it), fail IPI, just so that I could try to get into a PD-1 trial that is "the only real treatment"!  This type advice I have never given anyone, especially someone who's treatments are preventing growth and spread.  I do recommend knowing what is out there and having an option or two in mind in case they are needed.  I have never been a fan of bio-chem, but know it works for some.  I also have never liked the older  chemotherapies, but again they work for a few and it is an inividual choice as to what one believes is the best for them, not what they believe is the only thing for me.  I don't banish anyone to tweeter, regardless of their misguided attempts to control what others have access to.  Celeste is correct in saying that many of us oldtimers already know much of the info in the articale, and that IL-2 has helped many.  Out of the current approved and near approved treatments I agree with Dr Weber that anti-PD1 followed by ipi might be the sequencing combo that serves a large number of melanoma patients the best, with the least side effects.  We are not at the point of knowing yet.  Again don't throw out all possibilities outside of the one YOOU think is  what everyone should do.

P.S.  POW did not come out either supporting IL-2 as the major treatment or the only treatment, she just reposted the newest guidlines (Aug 2013) that is being provided to Oncologists by representatives of many leading Melanoma Centers and their reasoning as to  why they believe this is the way to go.  Why is this a reason for attack?  It is not!

P.S.  POW did not come out either supporting IL-2 as the major treatment or the only treatment, she just reposted the newest guidlines (Aug 2013) that is being provided to Oncologists by representatives of many leading Melanoma Centers and their reasoning as to  why they believe this is the way to go.  Why is this a reason for attack?  It is not!