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- May 5, 2015 at 7:02 pm
Basically they have several immunotherapy trials with no openings. They are phase 1 stuff for things they briefly mention in the videos we watch that they are looking into. Also if I understood right although the lag3 pd1 trial has arms for those of us who failed pd1 they haven't started filling them. they have one opening for one trial they have not given to humans yet but you have to have a certain protein on your tumor biopsy so should know in about 3 weeks. Talk about a ratty if that happens.
He also thinks TIL is an option if you can get in.
For those who have ran out of immunotherapy options he has seen a chemo combo do really good. Way better than they used to see. I forget the names but he said they are fda approved.
Artie
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- May 5, 2015 at 7:36 pm
Artie,Sorry to hear that they didn't have a lot to offer you right now, but I think you recall my feelings about TIL being a good option for you now. I know when you last talked to NIH, they didn't think you'd be able to handle the treatment (mobility issues?), have you talked with them since? It sounds like you've had some improvement since then that might allow you to qualify. I don't know if you saw the "Cancer: The Emperor of All Maladies" series on PBS a few weeks ago (very well done), but Dr. Rosenberg at NIH was featured over about 15 minutes during the last hour of the third episode, along with a melanoma patient receiving TIL — it definitely brought back some memories for me from 2010-11. Anyway, the episode also discussed immunotherapies including Yervoy/ipilimumab and other checkpoint inhibitors (although PD-1 wasn't specifically named) as less expensive options, because they don't need to be customized for each patient, TIL clearly is a viable option, certainly for those for whom ipi and anti-PD-1 have failed. So NIH could be an option, as are MD Anderson and Moffitt. Remember with NIH that everything is covered by the trial, including scans, which likely isn't the case at the other locations.Always wishing you the best,Joe-
- May 5, 2015 at 8:14 pm
Artie,
Can you get to MD Anderson? The melanoma department has their own surgeon (she's fantastic) who's done a number of T cell harvests. She did mine and my cells are "on ice" in case Keytruda fails me.
When I initially saw Dr. Hwu in October 2014, he said "you've got 3 really nice cards to play: Yervoy/chemo trial (I failed), Keytruda (currently on it), and TIL."
My experience there has been phenomenal.
Matt
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- May 5, 2015 at 8:38 pm
Artie, I'm sorry to hear that Chicago doesn't have more to offer at present. Regarding Matt's suggestion (which I think is a good one), I understand (from a contact) that Hwu was recently promoted and isn't seeing new patients. Matt, do you have a view on who is the next best person to see at MDA for TIL?
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- May 5, 2015 at 8:38 pm
Artie, I'm sorry to hear that Chicago doesn't have more to offer at present. Regarding Matt's suggestion (which I think is a good one), I understand (from a contact) that Hwu was recently promoted and isn't seeing new patients. Matt, do you have a view on who is the next best person to see at MDA for TIL?
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- May 5, 2015 at 9:34 pm
Hmmm. I didn't hear about him not seeing new patients. I know he sees very few. He's basically only in clinic on Wednesdays, and usually just the afternoon.
I have an email into both him and his PA and will let you know when I hear back.
Matt
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- May 5, 2015 at 9:34 pm
Hmmm. I didn't hear about him not seeing new patients. I know he sees very few. He's basically only in clinic on Wednesdays, and usually just the afternoon.
I have an email into both him and his PA and will let you know when I hear back.
Matt
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- May 5, 2015 at 9:34 pm
Hmmm. I didn't hear about him not seeing new patients. I know he sees very few. He's basically only in clinic on Wednesdays, and usually just the afternoon.
I have an email into both him and his PA and will let you know when I hear back.
Matt
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- May 5, 2015 at 9:44 pm
In the meantime, here is Patrick Hwu's CV / bio. His office telephone is attached if you'd like to call to get additional info. I've had 5 hospitalizaion treatments there and have met all of the docs on staff during their "rounds" of checking on me. All are excellent, but I'd try to see Hwu at all costs.
If you decide to go to MD Anderson and you can't get an appointment with Hwu via phone call, let me know. I'm at [email protected].
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- May 5, 2015 at 9:44 pm
In the meantime, here is Patrick Hwu's CV / bio. His office telephone is attached if you'd like to call to get additional info. I've had 5 hospitalizaion treatments there and have met all of the docs on staff during their "rounds" of checking on me. All are excellent, but I'd try to see Hwu at all costs.
If you decide to go to MD Anderson and you can't get an appointment with Hwu via phone call, let me know. I'm at [email protected].
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- May 5, 2015 at 9:45 pm
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- May 5, 2015 at 9:45 pm
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- May 7, 2015 at 12:26 pm
Thank you Matt. I should know next week what my local doc is willing to try. Maybe I'll hear from Chicago for an opening. Those are really good trials in my opinion. Then maybe I'll recall nih in Maryland and see what they say. If none of that turns out then yeah I'll probably have to pick a big place and move there. Probably mda because if I make it to the winter I don't want to deal with the New York snow. If I do get in a Chicago trial it shouldn't be thst bad even if I get snowed in cause I at least have some cousins there and my parents life time friend. During nice weather it isn't that bad a trip.
Artie
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- May 7, 2015 at 12:26 pm
Thank you Matt. I should know next week what my local doc is willing to try. Maybe I'll hear from Chicago for an opening. Those are really good trials in my opinion. Then maybe I'll recall nih in Maryland and see what they say. If none of that turns out then yeah I'll probably have to pick a big place and move there. Probably mda because if I make it to the winter I don't want to deal with the New York snow. If I do get in a Chicago trial it shouldn't be thst bad even if I get snowed in cause I at least have some cousins there and my parents life time friend. During nice weather it isn't that bad a trip.
Artie
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- May 7, 2015 at 12:26 pm
Thank you Matt. I should know next week what my local doc is willing to try. Maybe I'll hear from Chicago for an opening. Those are really good trials in my opinion. Then maybe I'll recall nih in Maryland and see what they say. If none of that turns out then yeah I'll probably have to pick a big place and move there. Probably mda because if I make it to the winter I don't want to deal with the New York snow. If I do get in a Chicago trial it shouldn't be thst bad even if I get snowed in cause I at least have some cousins there and my parents life time friend. During nice weather it isn't that bad a trip.
Artie
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- May 5, 2015 at 9:45 pm
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- May 5, 2015 at 9:44 pm
In the meantime, here is Patrick Hwu's CV / bio. His office telephone is attached if you'd like to call to get additional info. I've had 5 hospitalizaion treatments there and have met all of the docs on staff during their "rounds" of checking on me. All are excellent, but I'd try to see Hwu at all costs.
If you decide to go to MD Anderson and you can't get an appointment with Hwu via phone call, let me know. I'm at [email protected].
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- May 5, 2015 at 8:38 pm
Artie, I'm sorry to hear that Chicago doesn't have more to offer at present. Regarding Matt's suggestion (which I think is a good one), I understand (from a contact) that Hwu was recently promoted and isn't seeing new patients. Matt, do you have a view on who is the next best person to see at MDA for TIL?
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- May 5, 2015 at 8:14 pm
Artie,
Can you get to MD Anderson? The melanoma department has their own surgeon (she's fantastic) who's done a number of T cell harvests. She did mine and my cells are "on ice" in case Keytruda fails me.
When I initially saw Dr. Hwu in October 2014, he said "you've got 3 really nice cards to play: Yervoy/chemo trial (I failed), Keytruda (currently on it), and TIL."
My experience there has been phenomenal.
Matt
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- May 5, 2015 at 8:14 pm
Artie,
Can you get to MD Anderson? The melanoma department has their own surgeon (she's fantastic) who's done a number of T cell harvests. She did mine and my cells are "on ice" in case Keytruda fails me.
When I initially saw Dr. Hwu in October 2014, he said "you've got 3 really nice cards to play: Yervoy/chemo trial (I failed), Keytruda (currently on it), and TIL."
My experience there has been phenomenal.
Matt
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- May 7, 2015 at 12:18 pm
Thank you Joe. With all you've been through I'm amazed you recalled I had mobility issues. You are amazing.
They radiated 5 zones and I went from walking about 3 minutes a day to now over a couple hours. But no more than 30 minutes at a time. My hip can't do more than that. As you know better than I with what you've gone through its the being able to stand. Then take a step. Then another. The little improvements every day.
I haven't given up that he can get me in one of the trials. I'm confident if he can any of them has a good chance of knocking me into remission. They appear that good to me. But the slots opening is a very narrow window so getting it for me is going to take time. If I had been smart I would have done this last summer when I started the keytruda Eap at mayo. Oh well. At least I'm still here to give it a try. He also had a couple ideas my local doc can do. One is that chemo combo. I can't remember the names but I believe it is the same Shane did. That might knock this t10 down which is the only one that is currently a danger. I see my local doc next Monday to get more keytruda and see about these couple options.
I haven't recalled nih for til yet. I had to cancel last November when my walking went out. Now I'm not sure if there is enough non radiated material somewhere they can harvest. I just got back from Chicago yesterday and I'm a bit wore out. Surprisingly my walking held up ok thst I didnt need a wheel chair at all so that was good. But I do have their number. I recorded that series but only watched the first part of the first episode and got so depressed I turned it off. I'll have to fast forward to that spot on the third episode and see.
Artie
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- May 7, 2015 at 12:18 pm
Thank you Joe. With all you've been through I'm amazed you recalled I had mobility issues. You are amazing.
They radiated 5 zones and I went from walking about 3 minutes a day to now over a couple hours. But no more than 30 minutes at a time. My hip can't do more than that. As you know better than I with what you've gone through its the being able to stand. Then take a step. Then another. The little improvements every day.
I haven't given up that he can get me in one of the trials. I'm confident if he can any of them has a good chance of knocking me into remission. They appear that good to me. But the slots opening is a very narrow window so getting it for me is going to take time. If I had been smart I would have done this last summer when I started the keytruda Eap at mayo. Oh well. At least I'm still here to give it a try. He also had a couple ideas my local doc can do. One is that chemo combo. I can't remember the names but I believe it is the same Shane did. That might knock this t10 down which is the only one that is currently a danger. I see my local doc next Monday to get more keytruda and see about these couple options.
I haven't recalled nih for til yet. I had to cancel last November when my walking went out. Now I'm not sure if there is enough non radiated material somewhere they can harvest. I just got back from Chicago yesterday and I'm a bit wore out. Surprisingly my walking held up ok thst I didnt need a wheel chair at all so that was good. But I do have their number. I recorded that series but only watched the first part of the first episode and got so depressed I turned it off. I'll have to fast forward to that spot on the third episode and see.
Artie
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- May 7, 2015 at 12:18 pm
Thank you Joe. With all you've been through I'm amazed you recalled I had mobility issues. You are amazing.
They radiated 5 zones and I went from walking about 3 minutes a day to now over a couple hours. But no more than 30 minutes at a time. My hip can't do more than that. As you know better than I with what you've gone through its the being able to stand. Then take a step. Then another. The little improvements every day.
I haven't given up that he can get me in one of the trials. I'm confident if he can any of them has a good chance of knocking me into remission. They appear that good to me. But the slots opening is a very narrow window so getting it for me is going to take time. If I had been smart I would have done this last summer when I started the keytruda Eap at mayo. Oh well. At least I'm still here to give it a try. He also had a couple ideas my local doc can do. One is that chemo combo. I can't remember the names but I believe it is the same Shane did. That might knock this t10 down which is the only one that is currently a danger. I see my local doc next Monday to get more keytruda and see about these couple options.
I haven't recalled nih for til yet. I had to cancel last November when my walking went out. Now I'm not sure if there is enough non radiated material somewhere they can harvest. I just got back from Chicago yesterday and I'm a bit wore out. Surprisingly my walking held up ok thst I didnt need a wheel chair at all so that was good. But I do have their number. I recorded that series but only watched the first part of the first episode and got so depressed I turned it off. I'll have to fast forward to that spot on the third episode and see.
Artie
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- May 5, 2015 at 7:36 pm
Artie,Sorry to hear that they didn't have a lot to offer you right now, but I think you recall my feelings about TIL being a good option for you now. I know when you last talked to NIH, they didn't think you'd be able to handle the treatment (mobility issues?), have you talked with them since? It sounds like you've had some improvement since then that might allow you to qualify. I don't know if you saw the "Cancer: The Emperor of All Maladies" series on PBS a few weeks ago (very well done), but Dr. Rosenberg at NIH was featured over about 15 minutes during the last hour of the third episode, along with a melanoma patient receiving TIL — it definitely brought back some memories for me from 2010-11. Anyway, the episode also discussed immunotherapies including Yervoy/ipilimumab and other checkpoint inhibitors (although PD-1 wasn't specifically named) as less expensive options, because they don't need to be customized for each patient, TIL clearly is a viable option, certainly for those for whom ipi and anti-PD-1 have failed. So NIH could be an option, as are MD Anderson and Moffitt. Remember with NIH that everything is covered by the trial, including scans, which likely isn't the case at the other locations.Always wishing you the best,Joe -
- May 5, 2015 at 7:36 pm
Artie,Sorry to hear that they didn't have a lot to offer you right now, but I think you recall my feelings about TIL being a good option for you now. I know when you last talked to NIH, they didn't think you'd be able to handle the treatment (mobility issues?), have you talked with them since? It sounds like you've had some improvement since then that might allow you to qualify. I don't know if you saw the "Cancer: The Emperor of All Maladies" series on PBS a few weeks ago (very well done), but Dr. Rosenberg at NIH was featured over about 15 minutes during the last hour of the third episode, along with a melanoma patient receiving TIL — it definitely brought back some memories for me from 2010-11. Anyway, the episode also discussed immunotherapies including Yervoy/ipilimumab and other checkpoint inhibitors (although PD-1 wasn't specifically named) as less expensive options, because they don't need to be customized for each patient, TIL clearly is a viable option, certainly for those for whom ipi and anti-PD-1 have failed. So NIH could be an option, as are MD Anderson and Moffitt. Remember with NIH that everything is covered by the trial, including scans, which likely isn't the case at the other locations.Always wishing you the best,Joe -
- May 6, 2015 at 3:20 am
Artie-
Did you see Gajewski or Luke? Are you potential candidate when they open lag3? TIL definitely an option. I've heard TIL may be tough to get into but have you done any digging on that? Otherwise…how you feeling?
Josh
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- May 7, 2015 at 12:38 pm
Yeah Josh I saw Gajewski. I thought he was a great doc. I was very encouraged by the trials he talked about. The only problem is the wait for an open slot. So there's a couple things he said my local doc can try. Plus he said he would email my local doc. so yeah I think he's a great doc. Yes lag3 pd1 combo is one trial I could qualify for but the wait for that is going to be extremely long. So far they haven't started anyone on it for the failed pd1 arms. But there are 2 others that he said seem better than pd1. But again the wait for a slot. The 4th they have an open slot like the first person to be on this med but they have to test my local biopsy to see if I have whatever they are looking for.
Last nov I was all set to go to NIH in Maryland but my walking went out on me so didn't get to go. Haven't started recalling them yet.
I'm feeling really good. Just very tired from the Chicago trip.
Artie
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- May 7, 2015 at 12:38 pm
Yeah Josh I saw Gajewski. I thought he was a great doc. I was very encouraged by the trials he talked about. The only problem is the wait for an open slot. So there's a couple things he said my local doc can try. Plus he said he would email my local doc. so yeah I think he's a great doc. Yes lag3 pd1 combo is one trial I could qualify for but the wait for that is going to be extremely long. So far they haven't started anyone on it for the failed pd1 arms. But there are 2 others that he said seem better than pd1. But again the wait for a slot. The 4th they have an open slot like the first person to be on this med but they have to test my local biopsy to see if I have whatever they are looking for.
Last nov I was all set to go to NIH in Maryland but my walking went out on me so didn't get to go. Haven't started recalling them yet.
I'm feeling really good. Just very tired from the Chicago trip.
Artie
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- May 7, 2015 at 12:38 pm
Yeah Josh I saw Gajewski. I thought he was a great doc. I was very encouraged by the trials he talked about. The only problem is the wait for an open slot. So there's a couple things he said my local doc can try. Plus he said he would email my local doc. so yeah I think he's a great doc. Yes lag3 pd1 combo is one trial I could qualify for but the wait for that is going to be extremely long. So far they haven't started anyone on it for the failed pd1 arms. But there are 2 others that he said seem better than pd1. But again the wait for a slot. The 4th they have an open slot like the first person to be on this med but they have to test my local biopsy to see if I have whatever they are looking for.
Last nov I was all set to go to NIH in Maryland but my walking went out on me so didn't get to go. Haven't started recalling them yet.
I'm feeling really good. Just very tired from the Chicago trip.
Artie
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- May 6, 2015 at 2:51 pm
Artie, I am so sorry that there are not more choices for you. What are your plans going forward?
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- May 7, 2015 at 12:42 pm
Not sure yet. I see my local doc Monday for my scheduled keytruda and xgeva. But I'll talk to him about the couple things the Chicago doc said we could try. Depending on how that goes I might recall the til folks in Maryland. Other than being tired from the Chicago trip I feel great and currently suprisingly walk pretty good.
Artie
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- May 7, 2015 at 12:42 pm
Not sure yet. I see my local doc Monday for my scheduled keytruda and xgeva. But I'll talk to him about the couple things the Chicago doc said we could try. Depending on how that goes I might recall the til folks in Maryland. Other than being tired from the Chicago trip I feel great and currently suprisingly walk pretty good.
Artie
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- May 7, 2015 at 12:42 pm
Not sure yet. I see my local doc Monday for my scheduled keytruda and xgeva. But I'll talk to him about the couple things the Chicago doc said we could try. Depending on how that goes I might recall the til folks in Maryland. Other than being tired from the Chicago trip I feel great and currently suprisingly walk pretty good.
Artie
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- May 6, 2015 at 8:12 pm
I'm sorry to hear you are still having trouble- I wish there was something I could do to help other than stealing a moment when I can to read the board.
I'm not sure who you saw in Chicago, but I noticed one of the other posters mention Dr. Luke. I saw him when he was in Boston- both when I was trying to get into the PD-1 Ipi combo trial and again for the PD-1 EAP. I liked him well enough- he was always willing to listen to me and my concerns about various options and I didn't find him at all pushy. I was really upset when they found a bunch of brain mets the day before I was to see him about the combo trial and he gave me a direction to go in and some research to read about what he was suggesting, which I appreciate. I was a little dissapointed that he was leaving for Chicago, but then the PD-1 got approved earlier than expected and I stopped having to go to Boston anyway. He always seemed quite up to date on what was going on in the trial world.
Anyway, sounds like maybe T-cells are the way to go?
Best of luck,
-Eva
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- May 6, 2015 at 8:12 pm
I'm sorry to hear you are still having trouble- I wish there was something I could do to help other than stealing a moment when I can to read the board.
I'm not sure who you saw in Chicago, but I noticed one of the other posters mention Dr. Luke. I saw him when he was in Boston- both when I was trying to get into the PD-1 Ipi combo trial and again for the PD-1 EAP. I liked him well enough- he was always willing to listen to me and my concerns about various options and I didn't find him at all pushy. I was really upset when they found a bunch of brain mets the day before I was to see him about the combo trial and he gave me a direction to go in and some research to read about what he was suggesting, which I appreciate. I was a little dissapointed that he was leaving for Chicago, but then the PD-1 got approved earlier than expected and I stopped having to go to Boston anyway. He always seemed quite up to date on what was going on in the trial world.
Anyway, sounds like maybe T-cells are the way to go?
Best of luck,
-Eva
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- May 6, 2015 at 8:12 pm
I'm sorry to hear you are still having trouble- I wish there was something I could do to help other than stealing a moment when I can to read the board.
I'm not sure who you saw in Chicago, but I noticed one of the other posters mention Dr. Luke. I saw him when he was in Boston- both when I was trying to get into the PD-1 Ipi combo trial and again for the PD-1 EAP. I liked him well enough- he was always willing to listen to me and my concerns about various options and I didn't find him at all pushy. I was really upset when they found a bunch of brain mets the day before I was to see him about the combo trial and he gave me a direction to go in and some research to read about what he was suggesting, which I appreciate. I was a little dissapointed that he was leaving for Chicago, but then the PD-1 got approved earlier than expected and I stopped having to go to Boston anyway. He always seemed quite up to date on what was going on in the trial world.
Anyway, sounds like maybe T-cells are the way to go?
Best of luck,
-Eva
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