TIL Immunotherapy at NCI

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DH2Sleen
Posts: 60
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Fri Nov 18, 2016 6:15 am

KElizabeth wrote:I did want to share since I saw you mention other trial locations that I have some information that the Trial could come to University of Nebraska Medical Center in Omaha.

That would be awesome. When we talk to the researchers at NIH, I am always thinking about what it would take to roll this out on a larger scale. As an engineer, I can see how difficult the management and processing of the cells would be for locations without really tight process controls, not to mention the long hospital stay for the patient. When we met with the doctors on Monday, we talked a little about the MDAnderson study protocol. MDAnderson is going to try to reduce the in-patient time to just a few days and have the patient take some of the drugs at home. It will be wonderful if it works. Only time will tell.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
09/2013 colectomy
10/2013 - 3/2014 FOLFOX
04/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
03/2015 enter TIL trial @ NIH
07/01/15 Receive 148E9 cells to target K-ras G12D mutation
08/11/15 Reduction=18%, no new tumors
09/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
01/26/16 46% but one suspicious met
03/24/16 46% but one growing
04/07/16 Lung lobectomy NED for the first time

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Sleen
Posts: 282
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Dec 07, 2016 6:24 am

Tomorrow, Dec. 8, the NEJM will publish Dr. Tran's article about my case.

At my November follow-up, Dr. Rosenberg asked whether I would agree to speak to the press, since the NEJM article will not identify me by name. I agreed. Since then, three different print media outlets have contacted me for interviews. One sent a photographer to our house (CRINGE!!!).

Maybe you'll read about me in the New York Times, Wall Street Journal, or the Philadelphia Inquirer...I will update this thread with links as they become available.

Meanwhile, I'm hoping for updates from others who are in the various stages of the TIL trial.
DAS43?...AngelaN?...let's keep the good news coming. :)

Celine
my blog: Cancer Riot

12 mo. f/u: NED!
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 26 yrs. kids: 21, 18, 14, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

DAS43
Posts: 28
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Wed Dec 07, 2016 6:47 am

Can't wait to read your article! I haven't heard from NIH since they harvest my tumors. The waiting is nerve racking. I have started chemo in Pittsburgh. Vectabix and irinotecan 2 rounds so far. I'm blessed the rash and some fatigue are my worse side effects so far. Hasn't stopped me from loving on the grand babies or working.
11/13 total blockage DX colon cancer IV, colostomy
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs

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Sleen
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Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Dec 07, 2016 7:16 am

DAS43 wrote:I haven't heard from NIH since they harvest my tumors. The waiting is nerve racking.


It is! This trial big on the WAITING. You can email your fellow for an update--they are used to that, so don't feel like you are bothering them or anything.

Glad to read this update :)

Celine
my blog: Cancer Riot

12 mo. f/u: NED!
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 26 yrs. kids: 21, 18, 14, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

jdepp
Posts: 475
Joined: Sun Sep 28, 2008 7:53 pm

Re: TIL Immunotherapy at NCI

Postby jdepp » Wed Dec 07, 2016 7:47 am

I'm looking forward to the NEJM article.

I'm also in a chemo holding pattern since they harvested my tumors. I'm on regorafenib now and am exploring other trials, too.

Good luck to everyone & thanks for being such a forthcoming pioneer, Sleen. Not everyone would be willing to go public, but you're doing a great service to all patients.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16

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Maia
Posts: 2272
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Wed Dec 07, 2016 8:51 am

jdepp wrote:I'm looking forward to the NEJM article.


Me too! I don't think I can wait even one day more! :D

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

Re: TIL Immunotherapy at NCI

Postby Maia » Wed Dec 07, 2016 8:52 am

jdepp wrote:I'm also in a chemo holding pattern since they harvested my tumors.


Jdepp, so glad to hear that!

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Maia
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Re: TIL Immunotherapy at NCI

Postby Maia » Wed Dec 07, 2016 5:35 pm

Sleeeeeeen... yoohoo... something to share with us? :D :D

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Sleen
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Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Dec 07, 2016 6:02 pm

They published online TONIGHT. (surprise!)

Here are some links:
NEJM
New York Times
Wall Street Journal
Blog Post by our own DK37 (hi Tom!!!)
Philadelphia Inquirer
Houston Chronicle this one shows where we sequester the Nerf guns. Don't tell the boys.

Celine
Last edited by Sleen on Thu Dec 08, 2016 12:55 am, edited 2 times in total.
my blog: Cancer Riot

12 mo. f/u: NED!
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 26 yrs. kids: 21, 18, 14, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

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Maia
Posts: 2272
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Wed Dec 07, 2016 6:08 pm

This. Is. Fantastic!!
Image

1 Patient, 7 Tumors and 100 Billion Cells Equal 1 Striking Recovery
http://www.nytimes.com/2016/12/07/healt ... erapy.html
You're a STAR!!! :D

The whole article published today by Dr Rosenberg and team in New England Journal of Medicine, just because.
Last edited by Maia on Thu Dec 08, 2016 6:40 am, edited 1 time in total.

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: TIL Immunotherapy at NCI

Postby Nik Colon » Wed Dec 07, 2016 7:49 pm

Awesome!!!
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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juliej
Posts: 2673
Joined: Thu Aug 05, 2010 12:59 pm

Re: TIL Immunotherapy at NCI

Postby juliej » Wed Dec 07, 2016 8:23 pm

You're famous, girl! The whole world is looking at the images of your lung tumors disappearing! And to see the words "She is now cancer-free" printed in the New York Times about yourself! Does it get any more AWESOME than that?!

Congratulations! I love your wonderful smile in the photo too!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 2/20/2017, CEA<1

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HopeForJesse
Posts: 206
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: TIL Immunotherapy at NCI

Postby HopeForJesse » Wed Dec 07, 2016 9:47 pm

Congratulations! I read the WSJ post having no idea you were on ColonTalk. So wonderful for this hope to be shared in such a big way nationwide. :D :D :D :D
DH DX 01/16 49 YO inoperable RC stage IV liver mets
MSS, mod dif adenocarcinoma, high grade dysplasia, TP53 APC,BRCA2
12/15 CEA 241, 4/16 CEA 22.3 >6 FOLFOX (2/16-4/16) 7/16 CEA 4.3 :D 8/10 5.3 11/17 1.8
LAR/ileo 5/17/16 Clear margins 1/29 nodes
HAI, reversal, liver (some wedge) resections (7) & ablations (3) 7/12/16
FUDR 8/10/16 FOLFOX resume 8/24 reaction to oxy -just 5FU 12/28/16 No more chemo :D
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

DAS43
Posts: 28
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Wed Dec 07, 2016 10:19 pm

Great article!
11/13 total blockage DX colon cancer IV, colostomy
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs

mariane
Posts: 506
Joined: Sun Sep 13, 2015 6:16 pm

Re: TIL Immunotherapy at NCI

Postby mariane » Wed Dec 07, 2016 10:37 pm

Congratulations!
mom of almost 8 years old twins, dx @ 40 with stage 4 upper rectal cancer with liver mets on 6/26/2015, CEA 140
8/2015 - beginning chemo: 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, 12xFUDR
4 surgeries complete pathological response
CEA<2 since 10/2015
NED since May 2016

Praise God for every day with my family!


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