› Forums › General Melanoma Community › Trial Advice
- This topic has 33 replies, 5 voices, and was last updated 9 years, 4 months ago by
Bubbles.
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- November 10, 2016 at 1:51 am
Hi Everyone,
I haven't been on here much for the last year. I got this odd idea that I should get busy living. So I did some of that, went to Machu Pichhu, worked hard, met a simply fantastic girl, who is now my fiancé.
However…
My mel had other plans. About three months ago it woke back up. So I started an OX-40 trial (https://clinicaltrials.gov/show/NCT02410512). But all that did was piss it off. So now its all over the place (sub-q's, adjacent to heart, small intestine, more in lungs, more in liver, chest wall, etc.). If I knew what a ying-yang was, I'm sure I have it up the ying-yang too.
My onc is presenting me three options:
https://clinicaltrials.gov/show/NCT01307267, PF-05082566 alone or in combo with rituximab,
https://clinicaltrials.gov/show/NCT02655822,CPI-444 alone or in combo with atezolizumab,
https://clinicaltrials.gov/show/NCT01807182, TIL.I am leaning toward the TIL, for the simple fact it is the only one I really know much about. However, I am not super excitied to experiance the side effects.
Any thoughts oh board of collective experience and wisdom?
– Paul
- Replies
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- November 10, 2016 at 5:51 pm
Hi Paul, I would have to agree with your first choice if I was in your shoes. I would try and touch base with Josh who is going through the same or similiar procedure at M.D.Anderson. Best Wishes and keep pushing that" Expiration date" back!!!!ED
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- November 10, 2016 at 5:51 pm
Hi Paul, I would have to agree with your first choice if I was in your shoes. I would try and touch base with Josh who is going through the same or similiar procedure at M.D.Anderson. Best Wishes and keep pushing that" Expiration date" back!!!!ED
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- November 10, 2016 at 5:51 pm
Hi Paul, I would have to agree with your first choice if I was in your shoes. I would try and touch base with Josh who is going through the same or similiar procedure at M.D.Anderson. Best Wishes and keep pushing that" Expiration date" back!!!!ED
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- November 10, 2016 at 5:51 pm
Paul, first, good to hear from you and congratulations on your engagement! Sorry to hear about the recent mel developments. My quick thoughts–I'd try ipi/nivo before trying a Phase I trial unless that Phase 1 trial is really, really promising. I'd also go for TIL before a Phase I trial where dosage isn't even settled. Have they had good results with TIL in Seattle? I know that they are "new" at it.
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- November 10, 2016 at 5:51 pm
Paul, first, good to hear from you and congratulations on your engagement! Sorry to hear about the recent mel developments. My quick thoughts–I'd try ipi/nivo before trying a Phase I trial unless that Phase 1 trial is really, really promising. I'd also go for TIL before a Phase I trial where dosage isn't even settled. Have they had good results with TIL in Seattle? I know that they are "new" at it.
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- November 17, 2016 at 1:36 am
Thanks Mat, she is a sweetheart! I talked to my onc about the combo, and he is leery given the side effects I had from both as monotherapies (the ipi did a number on my endocrine system).
To date only 8 patients have been treated with TIL in Seattle. If my memory is correct the results are:
* all patients experienced tumor shrinkage
* 2 patients had a complete, durable response (~2 years to date)
* 2 patients became stable
* 2 patents had a partial response -
- November 17, 2016 at 1:36 am
Thanks Mat, she is a sweetheart! I talked to my onc about the combo, and he is leery given the side effects I had from both as monotherapies (the ipi did a number on my endocrine system).
To date only 8 patients have been treated with TIL in Seattle. If my memory is correct the results are:
* all patients experienced tumor shrinkage
* 2 patients had a complete, durable response (~2 years to date)
* 2 patients became stable
* 2 patents had a partial response -
- November 17, 2016 at 1:36 am
Thanks Mat, she is a sweetheart! I talked to my onc about the combo, and he is leery given the side effects I had from both as monotherapies (the ipi did a number on my endocrine system).
To date only 8 patients have been treated with TIL in Seattle. If my memory is correct the results are:
* all patients experienced tumor shrinkage
* 2 patients had a complete, durable response (~2 years to date)
* 2 patients became stable
* 2 patents had a partial response
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- November 10, 2016 at 5:51 pm
Paul, first, good to hear from you and congratulations on your engagement! Sorry to hear about the recent mel developments. My quick thoughts–I'd try ipi/nivo before trying a Phase I trial unless that Phase 1 trial is really, really promising. I'd also go for TIL before a Phase I trial where dosage isn't even settled. Have they had good results with TIL in Seattle? I know that they are "new" at it.
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- November 11, 2016 at 4:28 pm
Oh, Paul!! Good grief! So glad for your successes and sweetness. So sorry for this unfortunate resurgence!!!
First…I am going to try to put a link…but check out the "Cancer sucks" post below by Polymath:
I put up several ideas for "new" treatments (one was the OX40…but you've been there, done that!!!) including: IDO inhibitors (epacadostat), JAK inhibitors, anti-KIR, and a NEW, new one – anti-TYRP1.
So….there are those…for what it's worth. What all have you tried before now? Sorry, but can't recall or find it all. Have you tried ipi/nivo?
I'll take the trials you mentioned from the bottom up and tell you what I have:
To Brian's comment. TIL does have better results at places that do it most. It is tough. But, when it works…it works!! Some places also "pad" their results a bit (in my opinion) by taking only the "best" candidates and leaving those in serious need in the lurch, while the poor soul waits desperately for their cells to grow…then if they have advanced they are then rejected from participation. Just me being bitter on behalf of some of my peeps perhaps…but I would ask some nitty gritty questions about that should I be signing up. But, again…that's just me.
The other part about TIL is how many ways they are working on doing it currently. Josh is currently doing a TIL's process where T cells were modified, returned to the patient and combined with a checkpoint inhibitor.
The trial you noted seems to be the more old school version….where cells are grown from a tumor, then the patient has their old cells depleted with chemo (cyclophosphamide and fludarabine), the new ones are returned, and their growth stimulated with IL2 (in this case aldesleukin). I could be mixed up about all that, but that's what I get out of looking at the trial. And…you probably knew all that already.
But, here's a post I put up about TIL in September with links to other posts within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/long-lasting-complete-responses-in.html
Okay..only to posts allowed…will follow this with more….
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- November 11, 2016 at 4:28 pm
Oh, Paul!! Good grief! So glad for your successes and sweetness. So sorry for this unfortunate resurgence!!!
First…I am going to try to put a link…but check out the "Cancer sucks" post below by Polymath:
I put up several ideas for "new" treatments (one was the OX40…but you've been there, done that!!!) including: IDO inhibitors (epacadostat), JAK inhibitors, anti-KIR, and a NEW, new one – anti-TYRP1.
So….there are those…for what it's worth. What all have you tried before now? Sorry, but can't recall or find it all. Have you tried ipi/nivo?
I'll take the trials you mentioned from the bottom up and tell you what I have:
To Brian's comment. TIL does have better results at places that do it most. It is tough. But, when it works…it works!! Some places also "pad" their results a bit (in my opinion) by taking only the "best" candidates and leaving those in serious need in the lurch, while the poor soul waits desperately for their cells to grow…then if they have advanced they are then rejected from participation. Just me being bitter on behalf of some of my peeps perhaps…but I would ask some nitty gritty questions about that should I be signing up. But, again…that's just me.
The other part about TIL is how many ways they are working on doing it currently. Josh is currently doing a TIL's process where T cells were modified, returned to the patient and combined with a checkpoint inhibitor.
The trial you noted seems to be the more old school version….where cells are grown from a tumor, then the patient has their old cells depleted with chemo (cyclophosphamide and fludarabine), the new ones are returned, and their growth stimulated with IL2 (in this case aldesleukin). I could be mixed up about all that, but that's what I get out of looking at the trial. And…you probably knew all that already.
But, here's a post I put up about TIL in September with links to other posts within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/long-lasting-complete-responses-in.html
Okay..only to posts allowed…will follow this with more….
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- November 11, 2016 at 5:07 pm
Well crud!!! A post about atezolizumab dissappeared!!! I'll try again!
I don't know much about CPI-444, but basically adenosine (which is released by tumors and other cells) binds to a receptor on a T cell preventing it from doing it's job in attacking the tumor. CPI-444 fills that receptor before adenosine does and allows the t cell to recognize and fight the tumor.
Atezo has been combined with BRAFi to good success in melanoma – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-anti-pd1pdl1-combined-with.html
You aren't BRAF positive, are you??? At any rate….I think this trial sounds like a good option. C
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- November 11, 2016 at 5:07 pm
Well crud!!! A post about atezolizumab dissappeared!!! I'll try again!
I don't know much about CPI-444, but basically adenosine (which is released by tumors and other cells) binds to a receptor on a T cell preventing it from doing it's job in attacking the tumor. CPI-444 fills that receptor before adenosine does and allows the t cell to recognize and fight the tumor.
Atezo has been combined with BRAFi to good success in melanoma – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-anti-pd1pdl1-combined-with.html
You aren't BRAF positive, are you??? At any rate….I think this trial sounds like a good option. C
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- November 11, 2016 at 5:07 pm
Well crud!!! A post about atezolizumab dissappeared!!! I'll try again!
I don't know much about CPI-444, but basically adenosine (which is released by tumors and other cells) binds to a receptor on a T cell preventing it from doing it's job in attacking the tumor. CPI-444 fills that receptor before adenosine does and allows the t cell to recognize and fight the tumor.
Atezo has been combined with BRAFi to good success in melanoma – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-anti-pd1pdl1-combined-with.html
You aren't BRAF positive, are you??? At any rate….I think this trial sounds like a good option. C
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- November 11, 2016 at 4:28 pm
Oh, Paul!! Good grief! So glad for your successes and sweetness. So sorry for this unfortunate resurgence!!!
First…I am going to try to put a link…but check out the "Cancer sucks" post below by Polymath:
I put up several ideas for "new" treatments (one was the OX40…but you've been there, done that!!!) including: IDO inhibitors (epacadostat), JAK inhibitors, anti-KIR, and a NEW, new one – anti-TYRP1.
So….there are those…for what it's worth. What all have you tried before now? Sorry, but can't recall or find it all. Have you tried ipi/nivo?
I'll take the trials you mentioned from the bottom up and tell you what I have:
To Brian's comment. TIL does have better results at places that do it most. It is tough. But, when it works…it works!! Some places also "pad" their results a bit (in my opinion) by taking only the "best" candidates and leaving those in serious need in the lurch, while the poor soul waits desperately for their cells to grow…then if they have advanced they are then rejected from participation. Just me being bitter on behalf of some of my peeps perhaps…but I would ask some nitty gritty questions about that should I be signing up. But, again…that's just me.
The other part about TIL is how many ways they are working on doing it currently. Josh is currently doing a TIL's process where T cells were modified, returned to the patient and combined with a checkpoint inhibitor.
The trial you noted seems to be the more old school version….where cells are grown from a tumor, then the patient has their old cells depleted with chemo (cyclophosphamide and fludarabine), the new ones are returned, and their growth stimulated with IL2 (in this case aldesleukin). I could be mixed up about all that, but that's what I get out of looking at the trial. And…you probably knew all that already.
But, here's a post I put up about TIL in September with links to other posts within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/long-lasting-complete-responses-in.html
Okay..only to posts allowed…will follow this with more….
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- November 11, 2016 at 4:41 pm
As far as the rituximab trial….I know some Lymphoma peeps who have done well on this drug…in combination with others. However, I do not have any ready data regarding melanoma. There have been a fair number of crossovers with drugs that help renal cell/urothelial cancers also being effective against melanoma (atezo is one of those). However, they must have expanded this trial??? Since I don't see melanoma listed???
Anyhow, I don't know that I've helped you much at all. Finding a treatment after failing conventional ones is tough. Data is scarce. Geography play a big part in decision making and options. And then there's just doing what feels right for YOU!!! And that probably matters most.
Hang in there. I wish you my best. Keep us posted and give that girl a big HUG!!! love, c
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- November 11, 2016 at 4:41 pm
As far as the rituximab trial….I know some Lymphoma peeps who have done well on this drug…in combination with others. However, I do not have any ready data regarding melanoma. There have been a fair number of crossovers with drugs that help renal cell/urothelial cancers also being effective against melanoma (atezo is one of those). However, they must have expanded this trial??? Since I don't see melanoma listed???
Anyhow, I don't know that I've helped you much at all. Finding a treatment after failing conventional ones is tough. Data is scarce. Geography play a big part in decision making and options. And then there's just doing what feels right for YOU!!! And that probably matters most.
Hang in there. I wish you my best. Keep us posted and give that girl a big HUG!!! love, c
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- November 17, 2016 at 1:46 am
Thanks so much for all the links Celeste. It is so hard to pick a new trial right now. I don't feel like I have the luxury of time, and there is just not enough data to know which one has the best chance of working. A couple of tumors are in lymphg nodes adjacent to my heart which does not sound good. So I am leaning toward the TIL, since it least numbers have been published for it.
The TIL in Seattle is the old-school kind. At least they only infuse 5 bags of IL-2, instead of the entire 14 (sheesh, 14!).
I am going to Houston just before Thanksgiving to see if the folks at MD Anderson have a better idea. Otherwise, I am scheduled to start the TIL at the start of Decemeber. They already have my lymphocytes from last year.
So far I have tried:
* A vaccination trial (GVAX) at Johns Hopkins in 2012 – when I was still stage 3
* Ipi + radiation (the RADVAX) trial in 2014
* Keytruda in 2015
* OX-40 + atezolizumab -
- November 17, 2016 at 1:46 am
Thanks so much for all the links Celeste. It is so hard to pick a new trial right now. I don't feel like I have the luxury of time, and there is just not enough data to know which one has the best chance of working. A couple of tumors are in lymphg nodes adjacent to my heart which does not sound good. So I am leaning toward the TIL, since it least numbers have been published for it.
The TIL in Seattle is the old-school kind. At least they only infuse 5 bags of IL-2, instead of the entire 14 (sheesh, 14!).
I am going to Houston just before Thanksgiving to see if the folks at MD Anderson have a better idea. Otherwise, I am scheduled to start the TIL at the start of Decemeber. They already have my lymphocytes from last year.
So far I have tried:
* A vaccination trial (GVAX) at Johns Hopkins in 2012 – when I was still stage 3
* Ipi + radiation (the RADVAX) trial in 2014
* Keytruda in 2015
* OX-40 + atezolizumab -
- November 17, 2016 at 1:46 am
Thanks so much for all the links Celeste. It is so hard to pick a new trial right now. I don't feel like I have the luxury of time, and there is just not enough data to know which one has the best chance of working. A couple of tumors are in lymphg nodes adjacent to my heart which does not sound good. So I am leaning toward the TIL, since it least numbers have been published for it.
The TIL in Seattle is the old-school kind. At least they only infuse 5 bags of IL-2, instead of the entire 14 (sheesh, 14!).
I am going to Houston just before Thanksgiving to see if the folks at MD Anderson have a better idea. Otherwise, I am scheduled to start the TIL at the start of Decemeber. They already have my lymphocytes from last year.
So far I have tried:
* A vaccination trial (GVAX) at Johns Hopkins in 2012 – when I was still stage 3
* Ipi + radiation (the RADVAX) trial in 2014
* Keytruda in 2015
* OX-40 + atezolizumab -
- November 17, 2016 at 1:20 pm
You're right! Picking a trial, then the work of participating in one is tough…and time consuming! Even more so when you've tried several other therapies. Then it gets even more difficult to decide what drug or combo to seek. Checking out other options is a good idea. But after that, if you still feel good (as one can in this situation) about your 'local' TIL option….I say go for it! Hang in there and let us know what you are thinking. I hope you are able to have a good Thanksgiving in spite of it all. Love, c
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- November 17, 2016 at 1:20 pm
You're right! Picking a trial, then the work of participating in one is tough…and time consuming! Even more so when you've tried several other therapies. Then it gets even more difficult to decide what drug or combo to seek. Checking out other options is a good idea. But after that, if you still feel good (as one can in this situation) about your 'local' TIL option….I say go for it! Hang in there and let us know what you are thinking. I hope you are able to have a good Thanksgiving in spite of it all. Love, c
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- November 17, 2016 at 1:20 pm
You're right! Picking a trial, then the work of participating in one is tough…and time consuming! Even more so when you've tried several other therapies. Then it gets even more difficult to decide what drug or combo to seek. Checking out other options is a good idea. But after that, if you still feel good (as one can in this situation) about your 'local' TIL option….I say go for it! Hang in there and let us know what you are thinking. I hope you are able to have a good Thanksgiving in spite of it all. Love, c
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- November 11, 2016 at 4:41 pm
As far as the rituximab trial….I know some Lymphoma peeps who have done well on this drug…in combination with others. However, I do not have any ready data regarding melanoma. There have been a fair number of crossovers with drugs that help renal cell/urothelial cancers also being effective against melanoma (atezo is one of those). However, they must have expanded this trial??? Since I don't see melanoma listed???
Anyhow, I don't know that I've helped you much at all. Finding a treatment after failing conventional ones is tough. Data is scarce. Geography play a big part in decision making and options. And then there's just doing what feels right for YOU!!! And that probably matters most.
Hang in there. I wish you my best. Keep us posted and give that girl a big HUG!!! love, c
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- November 14, 2016 at 8:47 pm
Paul, I hate to hear about this setback for you. I sometimes feel we are powerless against this monster. I am thrilled to hear you have found a new love to share your life with.
Take care and continue to enjoy life and all we have around us. I would like to recommend a eagle watching float trip on the Skagit river next month. We have gone with PNW Float Trips ($43 groupon) several times but there are many others. Very peaceful.
Rob and Adriana.
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- November 14, 2016 at 8:47 pm
Paul, I hate to hear about this setback for you. I sometimes feel we are powerless against this monster. I am thrilled to hear you have found a new love to share your life with.
Take care and continue to enjoy life and all we have around us. I would like to recommend a eagle watching float trip on the Skagit river next month. We have gone with PNW Float Trips ($43 groupon) several times but there are many others. Very peaceful.
Rob and Adriana.
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- November 14, 2016 at 8:47 pm
Paul, I hate to hear about this setback for you. I sometimes feel we are powerless against this monster. I am thrilled to hear you have found a new love to share your life with.
Take care and continue to enjoy life and all we have around us. I would like to recommend a eagle watching float trip on the Skagit river next month. We have gone with PNW Float Trips ($43 groupon) several times but there are many others. Very peaceful.
Rob and Adriana.
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