› Forums › General Melanoma Community › Old School TIL
- This topic has 42 replies, 6 voices, and was last updated 9 years, 3 months ago by
_Paul_.
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- November 29, 2016 at 10:44 pm
MDA is a busy place. My God! A nurse did not come for me until an hour after my appointment.
I was lugging two big binders containing my medical history. I'm glad I had them because my medical history fax from SCCA was garbled. So it took another hour and a half to pour through those suckers.Finally I met with Dr. Isabella Glitza. I appreciated the way she laid out available treatment options (no, bio-chemo was not offered), and then discussed them all in light of my history.MDA also has a bunch of phase 1 trials, but no stats on their efficacy. She had a good point that I should exhaust trials first, while I am still eligible (I.e. healthy enough). Because I have failed ipi, pembro, and atezolizumab, there is doubt that the ipi-nivo combo will help.So the prioritized list came down to:1) Old School TIL, while I am healthy enough (although she also expressed concern that I may be resistant to immunotherapy),2) ipi-nivo, or3) some phase 1 trial.She also mentioned that if things get bad, they may be able to buy some time with a combo of chemo drugs. MDA is getting about the same response rate from them as ipi.She also discussed some real mad scientist stuff like tricking my cancer cells into exhibiting BRAF-like response and using targeted therapy to buy some time.Celeste, I forgot to ask about interlesional, but I will ask her via the MDA patient portal.– Paul
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- November 29, 2016 at 11:00 pm
Paul, what were the phase 1 trials???? Best Wishes!!!Ed
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- November 29, 2016 at 11:00 pm
Paul, what were the phase 1 trials???? Best Wishes!!!Ed
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- November 29, 2016 at 11:00 pm
Paul, what were the phase 1 trials???? Best Wishes!!!Ed
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- November 29, 2016 at 11:46 pm
Paul-
yes it's a machine over there. Big place…lot going on.
Why would you be resistant to immunotherapy? If you have TIL product, those cells had penetrated the tumor correct? I would take that as an immune response, just not one significant enough which is why they "reset" your immune system.
Our good friend Mat failed ipi and PD-1 individually but responded to the combo, I'm sure he's not only one. I just don't like that she said there's doubt on it working…not real optimistic there.
In regards to buying time, what is the plan after that? Treatment in pipeline?
Glad you had productive meeting. Also interested in mad scientist stuff!!!
Josh
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- November 30, 2016 at 12:28 am
I don't know the science behind what prompted both her and Sylvia Lee, the lead investigator of TIL in Seattle, to say the same thing. But the fact they both did is significant to me.
She did say there were more pathways than just the PD-1 and CTLA-4, so even if my cancer cells have developed resistance to those pathways, the TIL could kill the bastards using one of the others.
But it's all hand-waving guesswork. She didn't say anything was even likely, just suspicious.
So if I fail TIL then the next thing is the combo. Which frankly scares me more than the TIL since ipi already did such a number on me.
– Paul
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- November 30, 2016 at 12:39 am
So TIL is way to go. I assume you'll do that in Seattle since that's where you have the cells. Get 10's billions of those TIL cells to beat the heck out of this crap! I'm back there in 2 weeks, be interested as to next steps for me…well that'll be dependent on scan but I think I found a new sub q's so I assume this treatment isn't my magic bullett. I hate this crap!
Enjoy Lima…keep us posted!
Josh
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- November 30, 2016 at 1:12 am
Crap. I know you have a solid history of finding your own sub-q's. We have to just keep trying. We have to not die long enough to find a treatment that works. I know it's possible because there are old timers among us.
And if we do that and the saying what doesn't kill you makes you stronger is true–well, everything after will be gravy.
– Paul
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- November 30, 2016 at 1:12 am
Crap. I know you have a solid history of finding your own sub-q's. We have to just keep trying. We have to not die long enough to find a treatment that works. I know it's possible because there are old timers among us.
And if we do that and the saying what doesn't kill you makes you stronger is true–well, everything after will be gravy.
– Paul
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- November 30, 2016 at 1:12 am
Crap. I know you have a solid history of finding your own sub-q's. We have to just keep trying. We have to not die long enough to find a treatment that works. I know it's possible because there are old timers among us.
And if we do that and the saying what doesn't kill you makes you stronger is true–well, everything after will be gravy.
– Paul
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- November 30, 2016 at 12:39 am
So TIL is way to go. I assume you'll do that in Seattle since that's where you have the cells. Get 10's billions of those TIL cells to beat the heck out of this crap! I'm back there in 2 weeks, be interested as to next steps for me…well that'll be dependent on scan but I think I found a new sub q's so I assume this treatment isn't my magic bullett. I hate this crap!
Enjoy Lima…keep us posted!
Josh
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- November 30, 2016 at 12:39 am
So TIL is way to go. I assume you'll do that in Seattle since that's where you have the cells. Get 10's billions of those TIL cells to beat the heck out of this crap! I'm back there in 2 weeks, be interested as to next steps for me…well that'll be dependent on scan but I think I found a new sub q's so I assume this treatment isn't my magic bullett. I hate this crap!
Enjoy Lima…keep us posted!
Josh
-
- November 30, 2016 at 12:28 am
I don't know the science behind what prompted both her and Sylvia Lee, the lead investigator of TIL in Seattle, to say the same thing. But the fact they both did is significant to me.
She did say there were more pathways than just the PD-1 and CTLA-4, so even if my cancer cells have developed resistance to those pathways, the TIL could kill the bastards using one of the others.
But it's all hand-waving guesswork. She didn't say anything was even likely, just suspicious.
So if I fail TIL then the next thing is the combo. Which frankly scares me more than the TIL since ipi already did such a number on me.
– Paul
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- November 30, 2016 at 12:28 am
I don't know the science behind what prompted both her and Sylvia Lee, the lead investigator of TIL in Seattle, to say the same thing. But the fact they both did is significant to me.
She did say there were more pathways than just the PD-1 and CTLA-4, so even if my cancer cells have developed resistance to those pathways, the TIL could kill the bastards using one of the others.
But it's all hand-waving guesswork. She didn't say anything was even likely, just suspicious.
So if I fail TIL then the next thing is the combo. Which frankly scares me more than the TIL since ipi already did such a number on me.
– Paul
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- November 29, 2016 at 11:46 pm
Paul-
yes it's a machine over there. Big place…lot going on.
Why would you be resistant to immunotherapy? If you have TIL product, those cells had penetrated the tumor correct? I would take that as an immune response, just not one significant enough which is why they "reset" your immune system.
Our good friend Mat failed ipi and PD-1 individually but responded to the combo, I'm sure he's not only one. I just don't like that she said there's doubt on it working…not real optimistic there.
In regards to buying time, what is the plan after that? Treatment in pipeline?
Glad you had productive meeting. Also interested in mad scientist stuff!!!
Josh
-
- November 29, 2016 at 11:46 pm
Paul-
yes it's a machine over there. Big place…lot going on.
Why would you be resistant to immunotherapy? If you have TIL product, those cells had penetrated the tumor correct? I would take that as an immune response, just not one significant enough which is why they "reset" your immune system.
Our good friend Mat failed ipi and PD-1 individually but responded to the combo, I'm sure he's not only one. I just don't like that she said there's doubt on it working…not real optimistic there.
In regards to buying time, what is the plan after that? Treatment in pipeline?
Glad you had productive meeting. Also interested in mad scientist stuff!!!
Josh
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- November 30, 2016 at 2:31 am
Paul, I think you have a good plan. TIL or the combo seem like better options than a Phase I trial where dosage isn't settled. I'd ask them to elaborate on the logic that the treatments might not work since you've failed ipi and pembro individually–just a hunch or demonstrated in clinical experience?
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- December 1, 2016 at 3:23 pm
I specifically asked her that and she said she doesn't have any data yet. And it was specifically in regard to the ipi/nivo combo, not the other phase 1 treatments in general. I am the one that has become wary of phase-1 treatments given that there is no clinical response data and (anecdotally) because of what happened to my disease during the brief 6 weeks I was on the OX-40/atezolizumab trial.
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- December 1, 2016 at 3:23 pm
I specifically asked her that and she said she doesn't have any data yet. And it was specifically in regard to the ipi/nivo combo, not the other phase 1 treatments in general. I am the one that has become wary of phase-1 treatments given that there is no clinical response data and (anecdotally) because of what happened to my disease during the brief 6 weeks I was on the OX-40/atezolizumab trial.
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- December 1, 2016 at 3:23 pm
I specifically asked her that and she said she doesn't have any data yet. And it was specifically in regard to the ipi/nivo combo, not the other phase 1 treatments in general. I am the one that has become wary of phase-1 treatments given that there is no clinical response data and (anecdotally) because of what happened to my disease during the brief 6 weeks I was on the OX-40/atezolizumab trial.
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- November 30, 2016 at 2:31 am
Paul, I think you have a good plan. TIL or the combo seem like better options than a Phase I trial where dosage isn't settled. I'd ask them to elaborate on the logic that the treatments might not work since you've failed ipi and pembro individually–just a hunch or demonstrated in clinical experience?
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- November 30, 2016 at 2:31 am
Paul, I think you have a good plan. TIL or the combo seem like better options than a Phase I trial where dosage isn't settled. I'd ask them to elaborate on the logic that the treatments might not work since you've failed ipi and pembro individually–just a hunch or demonstrated in clinical experience?
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- November 30, 2016 at 3:39 am
Hey guys. All my favorite boys – all in one place! No worries about the intralesionals, Paul. Those big institutions have so much going on, rapid fire….when you're not cooling your heels in a small room…by yourself…forever! Then suddenly you've got all this info coming at you…. Anyhow, I'm glad you plowed your way through it. You might still ask your questions through the portal. But, bottom line – if you feel you got a good plan…go for it. Big hugs for all you guys! C
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- November 30, 2016 at 3:39 am
Hey guys. All my favorite boys – all in one place! No worries about the intralesionals, Paul. Those big institutions have so much going on, rapid fire….when you're not cooling your heels in a small room…by yourself…forever! Then suddenly you've got all this info coming at you…. Anyhow, I'm glad you plowed your way through it. You might still ask your questions through the portal. But, bottom line – if you feel you got a good plan…go for it. Big hugs for all you guys! C
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- November 30, 2016 at 3:39 am
Hey guys. All my favorite boys – all in one place! No worries about the intralesionals, Paul. Those big institutions have so much going on, rapid fire….when you're not cooling your heels in a small room…by yourself…forever! Then suddenly you've got all this info coming at you…. Anyhow, I'm glad you plowed your way through it. You might still ask your questions through the portal. But, bottom line – if you feel you got a good plan…go for it. Big hugs for all you guys! C
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- November 30, 2016 at 5:33 pm
Hi Paul,
Regarding intralesional therapies, I still don't understand why T-Vec is so rarely mentioned in this forum. It's FDA approved and appears to be a standard of care option for those with sub-q's. I even had it insurance approved for me even though live virus culture would need to be flown into my state, and it's likely it has never been administered here before. My specialist had recommended it since I have also failed just about every treatment although the ipi/nivo/radiation bought me about a year of stability (after failing both as single agents) , and I am now moving to surgical resection to eliminate stubborn tumors. Best in the battle.
Gary
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- December 1, 2016 at 2:36 pm
Gary, I recall that is is best for early stage patients. Take a look at:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4519012/.
Near the end of the abstract it says:
"Despite these promising results, responses have been uncommon in patients with visceral metastases. T-VEC is currently being evaluated in combination with other immune therapies (ipilimumab and pembrolizumab) with early signs of activity".
– Paul
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- December 1, 2016 at 2:36 pm
Gary, I recall that is is best for early stage patients. Take a look at:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4519012/.
Near the end of the abstract it says:
"Despite these promising results, responses have been uncommon in patients with visceral metastases. T-VEC is currently being evaluated in combination with other immune therapies (ipilimumab and pembrolizumab) with early signs of activity".
– Paul
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- December 1, 2016 at 2:36 pm
Gary, I recall that is is best for early stage patients. Take a look at:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4519012/.
Near the end of the abstract it says:
"Despite these promising results, responses have been uncommon in patients with visceral metastases. T-VEC is currently being evaluated in combination with other immune therapies (ipilimumab and pembrolizumab) with early signs of activity".
– Paul
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- November 30, 2016 at 5:33 pm
Hi Paul,
Regarding intralesional therapies, I still don't understand why T-Vec is so rarely mentioned in this forum. It's FDA approved and appears to be a standard of care option for those with sub-q's. I even had it insurance approved for me even though live virus culture would need to be flown into my state, and it's likely it has never been administered here before. My specialist had recommended it since I have also failed just about every treatment although the ipi/nivo/radiation bought me about a year of stability (after failing both as single agents) , and I am now moving to surgical resection to eliminate stubborn tumors. Best in the battle.
Gary
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- November 30, 2016 at 5:33 pm
Hi Paul,
Regarding intralesional therapies, I still don't understand why T-Vec is so rarely mentioned in this forum. It's FDA approved and appears to be a standard of care option for those with sub-q's. I even had it insurance approved for me even though live virus culture would need to be flown into my state, and it's likely it has never been administered here before. My specialist had recommended it since I have also failed just about every treatment although the ipi/nivo/radiation bought me about a year of stability (after failing both as single agents) , and I am now moving to surgical resection to eliminate stubborn tumors. Best in the battle.
Gary
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- November 30, 2016 at 9:03 pm
Hi Paul, I came across this one today and thought it might be something to think about latter on. Trial keynote 252 epacadostat (IDO) inhibitor plus pembro. Here is a link with Dr. Hamid http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7B36107d74-e514-4719-86cc-f5a58ef2c91c%7D/video-research-into-immunotherapy-combinations-makes-great-strides-at-esmo?utm_source=maestro&utm_medium=email&utm_campaign=hematology oncology news Best Wishes!!!!!Ed
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- December 1, 2016 at 3:04 pm
Thanks Ed, that was quite an informative video. What I found encouraging is that he is talking about promising phase 1 trials moving forward to phase 3. That's what I would really like to see. Some solid phase 3 data about the response rate so that we can make better decisions based on data, not just on how something "sounds".
– Paul
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- December 1, 2016 at 3:04 pm
Thanks Ed, that was quite an informative video. What I found encouraging is that he is talking about promising phase 1 trials moving forward to phase 3. That's what I would really like to see. Some solid phase 3 data about the response rate so that we can make better decisions based on data, not just on how something "sounds".
– Paul
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- December 1, 2016 at 3:04 pm
Thanks Ed, that was quite an informative video. What I found encouraging is that he is talking about promising phase 1 trials moving forward to phase 3. That's what I would really like to see. Some solid phase 3 data about the response rate so that we can make better decisions based on data, not just on how something "sounds".
– Paul
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- November 30, 2016 at 9:03 pm
Hi Paul, I came across this one today and thought it might be something to think about latter on. Trial keynote 252 epacadostat (IDO) inhibitor plus pembro. Here is a link with Dr. Hamid http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7B36107d74-e514-4719-86cc-f5a58ef2c91c%7D/video-research-into-immunotherapy-combinations-makes-great-strides-at-esmo?utm_source=maestro&utm_medium=email&utm_campaign=hematology oncology news Best Wishes!!!!!Ed
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- November 30, 2016 at 9:03 pm
Hi Paul, I came across this one today and thought it might be something to think about latter on. Trial keynote 252 epacadostat (IDO) inhibitor plus pembro. Here is a link with Dr. Hamid http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7B36107d74-e514-4719-86cc-f5a58ef2c91c%7D/video-research-into-immunotherapy-combinations-makes-great-strides-at-esmo?utm_source=maestro&utm_medium=email&utm_campaign=hematology oncology news Best Wishes!!!!!Ed
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