› Forums › General Melanoma Community › Seattle TIL
- This topic has 32 replies, 6 voices, and was last updated 11 years, 1 month ago by
_Paul_.
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- January 10, 2015 at 5:11 pm
Here is an update for anyone considering TIL. I just met with Dr. Lee at the Seattle Cancer Care Alliance about enrolling in the "Tumor-Infiltrating Lymphocytes (TIL) for Metastatic Melanoma (2643)" trial (http://www.seattlecca.org/clinical-trials/melanoma-NCT01807182.cfm)
I specifically asked about mortality rates, since some people on this board have expressed concern about the treatment itself killing people. Dr. Lee assured me that none of the patients she has seen in Seattle have died as a result of the treatment. As many of you know the treatment itself involves traditional chemotherapy to destroy the bodies ineffective TIL cells, followed by an infusion of lab grown TIL cells, followed immediately by a series of IL-2 administrations to “feed” the new TIL cells. The entire process is done in the hospital and the patient is transferred to the ICU for the IL-2 part of it. Testing is done in advance to ensure the patient is healthy enough to undergo treatment.
The great thing about Seattle is that the lab grown TIL cells are cryogenically preserved until the patient needs them. So in my case, where Yervoy appears to have halted the progression of my disease (except for one tumor which is growing, but which will also be harvested to extract the initial TIL cells from), they will wait until there is progression before moving to Step 2, which is the actual treatment I outlined above.
My original plan was to try Yervoy, and move to Opdivo or Keytruda if it didn’t work. But my new plan is to wait and see if I get a durable response from the Yervoy, then try TIL if that fails, and then try anti-PD-1 if that fails. The reason is that you have to be fairly healthy for the TIL. If I left TIL for last, I might not be healthy enough by then to endure the treatment.
I gotta tell you though, that it is pretty awesome to have any choices at all! I am a skeptic at heart, and when I first heard people saying stuff like “this is the best time to have melanoma” but had already seen the (now outdated) survival statistics, I thought, yeah right, this is just stuff people say to keep our hopes up but the reality is that I am doomed, plain and simple. Well that skepticism is not justified. The stuff people are saying is true. I’ve been converted. I’m a believer. Woohoo!
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- January 10, 2015 at 6:14 pm
I love your attitude, Paul! I hope its contagious! It is wonderful to have so many options available to us.
Best of health to you
Maggie
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- January 10, 2015 at 7:19 pm
Sounds like a great plan Paul. Thanks for sharing. I hope we see more and more places for TIL options in the future. Hope you don't need it but it sure is nice to know it's there if you do.
Brian
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- January 10, 2015 at 10:30 pm
Why don't you do anti PD1 insted of wait and see? I have not heard of any resistance to anti PD1 so if you first do anti PD1 and then TIL in case of the slightest progression, I think that you can still go back to anti PD1 after if needed, if that is possible considering health insurance of course.
I wish you success and good health in any case!
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- January 10, 2015 at 10:30 pm
Why don't you do anti PD1 insted of wait and see? I have not heard of any resistance to anti PD1 so if you first do anti PD1 and then TIL in case of the slightest progression, I think that you can still go back to anti PD1 after if needed, if that is possible considering health insurance of course.
I wish you success and good health in any case!
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- January 10, 2015 at 10:30 pm
Why don't you do anti PD1 insted of wait and see? I have not heard of any resistance to anti PD1 so if you first do anti PD1 and then TIL in case of the slightest progression, I think that you can still go back to anti PD1 after if needed, if that is possible considering health insurance of course.
I wish you success and good health in any case!
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- January 12, 2015 at 5:33 pm
Paul, glad to hear that you're feeling better. I also believe that TIL is a good option. Not sure whether I'd do it before PD-1, but that's an individual choice. Given your interest in TIL, you might look at the NIH. Certainly not as convenient for you as a Seattle-based program, but NIH does have the most established track record for TIL.
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- January 12, 2015 at 5:33 pm
Paul, glad to hear that you're feeling better. I also believe that TIL is a good option. Not sure whether I'd do it before PD-1, but that's an individual choice. Given your interest in TIL, you might look at the NIH. Certainly not as convenient for you as a Seattle-based program, but NIH does have the most established track record for TIL.
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- January 12, 2015 at 5:33 pm
Paul, glad to hear that you're feeling better. I also believe that TIL is a good option. Not sure whether I'd do it before PD-1, but that's an individual choice. Given your interest in TIL, you might look at the NIH. Certainly not as convenient for you as a Seattle-based program, but NIH does have the most established track record for TIL.
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- January 17, 2015 at 1:38 am
Hi Paul!
I'm also being treated at SCCA/Dr. Lee and this past fall started the first part of this TIL program. They were successful with harvesting the needed TIL and for now will keep until ready to use. I continue with surgeries, wait and watch approach and frequent scans. I think it's a good plan and we feel fortunate to be so close to this latest up to date treatment. I had been under the care of Dr. Margolin and now Dr. Lee, whom I like very much!
Swanee
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- January 17, 2015 at 1:38 am
Hi Paul!
I'm also being treated at SCCA/Dr. Lee and this past fall started the first part of this TIL program. They were successful with harvesting the needed TIL and for now will keep until ready to use. I continue with surgeries, wait and watch approach and frequent scans. I think it's a good plan and we feel fortunate to be so close to this latest up to date treatment. I had been under the care of Dr. Margolin and now Dr. Lee, whom I like very much!
Swanee
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- January 17, 2015 at 6:33 pm
Hi Swanee,
I was one of Dr. Margolin's patients too before she moved back to Stanford. My new oncologist is Dr. Thompson. But as far as I can tell, the whole melanoma crew at SCCA is top notch. I just had my gall bladder removed yesterday and so now they will see if they can harvest the TIL cells from the tumor inside it.
I read your profile and you have certainly been through the wringer! But it is inspirational that you have survived 5 years so far with a condition that traditional gives us less than one.
Did you ever consider anti-PD-1?
– Paul.
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- January 17, 2015 at 6:33 pm
Hi Swanee,
I was one of Dr. Margolin's patients too before she moved back to Stanford. My new oncologist is Dr. Thompson. But as far as I can tell, the whole melanoma crew at SCCA is top notch. I just had my gall bladder removed yesterday and so now they will see if they can harvest the TIL cells from the tumor inside it.
I read your profile and you have certainly been through the wringer! But it is inspirational that you have survived 5 years so far with a condition that traditional gives us less than one.
Did you ever consider anti-PD-1?
– Paul.
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- January 18, 2015 at 1:53 am
Hi Paul,
I've considered it all!! I think the concensus is with my Dr.'s because of my severe ippi response that immunotherapy treatments are going to be much more difficult for me than most patients. Margolin and Dr. Lee strongly feel my best option will be TIL. I mostly agree with them, but I feel TIL is all or none vs. an immunotherapy drug we can start and stop if side effects are too severe. The other problem is, I have strong auto immune tendencies (I don't have an auto immune disorder) but have family members with serious auto immune diseases and have a variety of my own issues that indicate I am a candidate. So far I have been able to remove disease with surgery but that cannot go on indefinitely. I've lived a pretty good life after being diagnosed and have found the surgery to be much more tolerable than the drugs!! I'm kinda waiting for something bigger to develop to force me into TIL but am happy plugging along the way I have been for the past 5 years. However, I want to be done with this or at least enjoy a 5-10 year break, so without doing a treatment with the hope of being cured, you are perpetually on this scanning schedule and the time bomb kinda of lifestyle…..I'm not complaining 🙂 but do dream of a day when I can move on and think of melanoma as a chapter in my life!
Wishing you great success with your treatments Paul! And would be fun to meet up at the symposium in Seattle sometime in April or May?
Swanee
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- January 18, 2015 at 1:53 am
Hi Paul,
I've considered it all!! I think the concensus is with my Dr.'s because of my severe ippi response that immunotherapy treatments are going to be much more difficult for me than most patients. Margolin and Dr. Lee strongly feel my best option will be TIL. I mostly agree with them, but I feel TIL is all or none vs. an immunotherapy drug we can start and stop if side effects are too severe. The other problem is, I have strong auto immune tendencies (I don't have an auto immune disorder) but have family members with serious auto immune diseases and have a variety of my own issues that indicate I am a candidate. So far I have been able to remove disease with surgery but that cannot go on indefinitely. I've lived a pretty good life after being diagnosed and have found the surgery to be much more tolerable than the drugs!! I'm kinda waiting for something bigger to develop to force me into TIL but am happy plugging along the way I have been for the past 5 years. However, I want to be done with this or at least enjoy a 5-10 year break, so without doing a treatment with the hope of being cured, you are perpetually on this scanning schedule and the time bomb kinda of lifestyle…..I'm not complaining 🙂 but do dream of a day when I can move on and think of melanoma as a chapter in my life!
Wishing you great success with your treatments Paul! And would be fun to meet up at the symposium in Seattle sometime in April or May?
Swanee
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- January 18, 2015 at 1:53 am
Hi Paul,
I've considered it all!! I think the concensus is with my Dr.'s because of my severe ippi response that immunotherapy treatments are going to be much more difficult for me than most patients. Margolin and Dr. Lee strongly feel my best option will be TIL. I mostly agree with them, but I feel TIL is all or none vs. an immunotherapy drug we can start and stop if side effects are too severe. The other problem is, I have strong auto immune tendencies (I don't have an auto immune disorder) but have family members with serious auto immune diseases and have a variety of my own issues that indicate I am a candidate. So far I have been able to remove disease with surgery but that cannot go on indefinitely. I've lived a pretty good life after being diagnosed and have found the surgery to be much more tolerable than the drugs!! I'm kinda waiting for something bigger to develop to force me into TIL but am happy plugging along the way I have been for the past 5 years. However, I want to be done with this or at least enjoy a 5-10 year break, so without doing a treatment with the hope of being cured, you are perpetually on this scanning schedule and the time bomb kinda of lifestyle…..I'm not complaining 🙂 but do dream of a day when I can move on and think of melanoma as a chapter in my life!
Wishing you great success with your treatments Paul! And would be fun to meet up at the symposium in Seattle sometime in April or May?
Swanee
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- January 18, 2015 at 4:10 pm
Thanks Swanee! Yeah, an ulcerated colon doesn't sound too fun. My understanding is that it can be life-threatening. I had an immune response to IPI which caused Dr. Thompson to suggest I stop after the third infusion (which I did), but it was manageable with prednisone.
I hope you get that 5-10 year break too!
And I will be at the spring symposium for sure! Were you at the last one? Dr. Margolin and Dr. Byrd asked me to be one of the patient speakers and I was a little nervous but I managed to get up there (with my wife's support!)
If you ever want to chat via email my email address is thermaller@comcast.net.
– Paul.
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- January 18, 2015 at 4:10 pm
Thanks Swanee! Yeah, an ulcerated colon doesn't sound too fun. My understanding is that it can be life-threatening. I had an immune response to IPI which caused Dr. Thompson to suggest I stop after the third infusion (which I did), but it was manageable with prednisone.
I hope you get that 5-10 year break too!
And I will be at the spring symposium for sure! Were you at the last one? Dr. Margolin and Dr. Byrd asked me to be one of the patient speakers and I was a little nervous but I managed to get up there (with my wife's support!)
If you ever want to chat via email my email address is thermaller@comcast.net.
– Paul.
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- January 17, 2015 at 6:33 pm
Hi Swanee,
I was one of Dr. Margolin's patients too before she moved back to Stanford. My new oncologist is Dr. Thompson. But as far as I can tell, the whole melanoma crew at SCCA is top notch. I just had my gall bladder removed yesterday and so now they will see if they can harvest the TIL cells from the tumor inside it.
I read your profile and you have certainly been through the wringer! But it is inspirational that you have survived 5 years so far with a condition that traditional gives us less than one.
Did you ever consider anti-PD-1?
– Paul.
-
- January 17, 2015 at 1:38 am
Hi Paul!
I'm also being treated at SCCA/Dr. Lee and this past fall started the first part of this TIL program. They were successful with harvesting the needed TIL and for now will keep until ready to use. I continue with surgeries, wait and watch approach and frequent scans. I think it's a good plan and we feel fortunate to be so close to this latest up to date treatment. I had been under the care of Dr. Margolin and now Dr. Lee, whom I like very much!
Swanee
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