TIL Immunotherapy at NCI

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lilacbreastedroller
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Joined: Thu Sep 05, 2013 10:25 am

Re: TIL Immunotherapy at NCI

Postby lilacbreastedroller » Wed Jan 28, 2015 1:50 pm

In one week, I will have surgery to remove two lung mets for TIL (tumor infiltrating lymphocytes) harvesting. First time I"ll ever have had surgery for my cancer. Met with the surgeon today - he said he would do VATS. Gosh, I feel like all the rest of you people who have gotten to have surgery! If I were having a liver resection too I'd be saying "my resection" as if I were flashing around a new engagement ring!

After that, then we see if the TILs grow which should take 4-6 weeks. So... in one week I"ll be under the knife! This is progress.

NIH/NCI is a very nice facility. I'm going to create a separate thread about how to access clinical trials, since this is my 2nd. If there is an old thread somewhere, buried, I"ll bump it up and add to it.

onward!
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

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Sleen
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Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Jan 29, 2015 9:24 pm

That's EXCITING! Congrats.

I'm still waiting to hear whether my nodes grew "enough" for them to re-consider me for the TIL trial. They were supposed to get my latest scan today so I'm hoping to hear soon.
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: TIL Immunotherapy at NCI

Postby Bev G » Fri Jan 30, 2015 10:49 am

Thank you all who are in/attempting to get in to this trial. Those of our peeps who have enrolled in clinical trials are true heroes to me. I know those who enter do it for potential cure, or longer PFS, butt still, it is a bold and heroic thing to do. I have to say, after being on the board for 5 years now and reading about all the clinical trials our folks have been on, this one sounds the most promising, the science makes sense, and hope springs eternal that this will be the miracle we are all looking for. Skypuppy, what are you thinking about this, pal?

Maia, I haven't told you recently enough how amazing and wonderful you are. I live in awe of you, and your immense grace. Love you very much.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Sleen
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Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Feb 10, 2015 4:21 pm

NCI/NIH has had my latest scan since Jan 29.
Just got a msg saying that the docs were evaluating my case today.
I should know tomorrow whether or not I'm eligible for the TIL trial.

Staining for the ESO, MESOTHELIN, and MAGE trials came back negative for all.

Hoping and praying that I get in!
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Tue Feb 10, 2015 7:14 pm

*Everything* crossed for you, Sleen. Everything, and more.

Karin -owe you an email!

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lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: TIL Immunotherapy at NCI

Postby lilacbreastedroller » Tue Feb 10, 2015 7:47 pm

Great news Celine! I think they will take you. Well, I hope they do!

I am at NCI now and have been asking lots of questions. While they do not discriminate, they are very interested in healthy stage IVs just because there is so much lag time (surgery, cell growth, tumor analysis...) that patients need to have more than a few months to live. Some patients wait until they're about to die and apply for this (and other) trials as a last resort and unfortunately, they are too sick and are rejected. So in those terms, you seem like you'd be ideal. If your research doctor is pulling for you, you're golden. Good luck!

I just had the leukapheresis and the vats surgery for tumor extraction. I asked about other colorectals in this trial, and there aren't many. Somebody here now, a fellow colorectal, is ahead of me and is about to begin the cell therapy. If I meet him I will try to talk him into joining our community! There are two patient rooms with "limited contact" signs outside the doors, so he may be in one of those. I'm hooked up to a chest tube but think they will make me walk around tomorrow, so maybe I will be able to meet him and chat.

I hope they find TIL cells in the junk they extracted, and of course, I hope my cells (a/k/a little karins) grow!
Atb
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: TIL Immunotherapy at NCI

Postby Cb75 » Tue Feb 10, 2015 10:03 pm

Sounds great!! Speedy recovery to you Karin. I can't wait to hear about how things go....

cb <3
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

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pollo65
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Facebook Username: pollo2
Location: central valley, calif

Re: TIL Immunotherapy at NCI

Postby pollo65 » Wed Feb 11, 2015 12:20 pm

Found this on NPR s Facebook page.
Pollo 65

http://www.npr.org/blogs/health/2015/02 ... t=20150209
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Wed Feb 11, 2015 12:27 pm

pollo65 wrote:Found this on NPR s Facebook page.
Pollo 65

http://www.npr.org/blogs/health/2015/02 ... t=20150209


That's so great, Pollo. That's the drug nivolumab (brand name Opdivo, now that has been approved), discussed here: viewtopic.php?f=1&t=45897

Checkpoint inhibitors, TIL (adaptive T-cell therapies, this one Sleen and Karin are getting) and vaccines are the real three kinds of immunotherapies that hold promise! :)

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Wed Feb 11, 2015 12:32 pm

With my best wishes for Karin and Sleen:
""Very possibly the coolest thing you will see all week: real video of T cells destroying cancer cells! "
From The American Society for Cell Biology/ NIH. January 2015

https://www.youtube.com/watch?v=cJU7ZaWe5-o

That's the sassy T cell on my avatar, doing "nom nom nom" to the crazy cells... :wink:

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pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: TIL Immunotherapy at NCI

Postby pollo65 » Wed Feb 11, 2015 3:07 pm

By far the best video I have seen in a long time, perfect for visualization!
Pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

User avatar
lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: TIL Immunotherapy at NCI

Postby lilacbreastedroller » Wed Feb 11, 2015 7:05 pm

Pollo - Several people sent me this NPR article this week! Did it pop up in facebook? It shows my friends and family are interested and care, which is nice, but this topic is so complicated. I actually took Nivolumab (the drug in the article you posted) last summer as part of another clinical trial (see my signature thread) but it didn't work as well as the researchers would have liked, so I was booted out. It did drop my CEA somewhat, but scans showed growth. Interestingly enough, the researchers weren't even measuring CEA... My home oncologist was checking it. Odd.

As Maia said, TIL immunotherapy is different science. Earlier in this thread, Maia posted an article about a woman in Montana named Melinda Bachini. I"ve been responding to my friends with an slightly different article about her, which explains the science in very simple language:

http://www.nbcnews.com/health/cancer/ne ... er-n100811

atb
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

User avatar
Sleen
Posts: 311
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Feb 11, 2015 7:21 pm

Still no news here. I appreciate the good thoughts!!!
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

User avatar
Sleen
Posts: 311
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Feb 12, 2015 8:17 am

NCI called.
I did not get into the trial.
They say that the tumors in my lungs are in locations that would require a lobectomy.
I'm in denial, thinking there must be some mistake.

So sad and disappointed.
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Thu Feb 12, 2015 8:56 am

Oh, so sorry, Sleen. But it's so good that you got to the point where you got this information (personally, I'd trust them on this).
What about the other trials?
Remember you can always contact the Cancer Research Institute (focus in cancer immunotherapy, only) and get a trial navigator to help you to find a trial, according with your location/situation:

http://cancerresearch.org/cancer-immuno ... ial-finder

(you can also create a profile and explore the results by yourself)

or

http://www.theanswertocancer.org/ (scroll down)

"Find a trial by phone
1.855.216.0127
Hours you can reach us
8:30 AM - 6:00 PM ET (M-F)"

Strong, good thoughts heading your way,
m.

Edited to add: just an after thought... I've seen in your signature that you originally had bladder invasion. You may ask a trial navigator for trials with the anti PD-L1 MPDL3280A-it's the checkpoint inhibitor with, probably, the most data for CRC, until the moment, *and* got FDA 'breakthrough therapy' status for bladder cancer,past year (and same status past week for non-small lung cell cancer)


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