TIL Immunotherapy at NCI

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Maia
Posts: 2429
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Thu Dec 08, 2016 6:48 am

Love the pic on the Houston Chronicle too.

This is a link to the full version of The Wall Street Journal, with pic of Dr Rosenberg :) https://drive.google.com/open?id=0Bwc5k ... VNDZ0ZBWG8

Wonderfullymade
Posts: 119
Joined: Tue Jan 12, 2016 4:33 pm

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Thu Dec 08, 2016 8:54 am

Wow! What a nice article! Thank you for all you've done for us!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High Lynch?
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: TIL Immunotherapy at NCI

Postby dudette » Thu Dec 08, 2016 2:11 pm

Loved the read and the photo!

Thank you for being one of the courageous trail blazers and bringing hope to the rest of us.

t/
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

Lee
Posts: 5156
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Sat Dec 10, 2016 2:35 pm

CONGRATULATIONS Celine,

Wonderful article and such great hope for others.

So happy for you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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Sleen
Posts: 295
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Mon Dec 12, 2016 6:28 pm

Thank you all for your kind words in this thread!
A snippet from my life recently:
Me: Good morning, daughter! [to 17 y.o. dd as she gathered breakfast items]
dd: << staring at me >>
Me: Hello?
dd: << still staring >>
Me: You ok?
dd: The New York Times, Mom?
Me: Yes. Cool, huh?
dd: The New York TIMES...MOM!
Me: Yes...
dd: You never told us you were THAT SICK.
Me: Oh. Really?...SUCCESS!!!
dd: << eye roll >>

ha ha.
Latest blog post is up (see sig.) THE ONE HUNDREDTH.
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 26 yrs. kids: 21, 18, 15, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

plastikos
Posts: 267
Joined: Wed Jan 14, 2015 6:09 am

Re: TIL Immunotherapy at NCI

Postby plastikos » Tue Dec 13, 2016 2:41 am

How difficult is it to get into this trial? Is it open for Kras wild type, MSI-H patients?
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

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DH2Sleen
Posts: 65
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Tue Dec 13, 2016 7:38 am

plastikos wrote:How difficult is it to get into this trial? Is it open for Kras wild type, MSI-H patients?


Now that is a good question that we (Sleen and I) want everyone to understand. This trial is open to every CRC type!

We have been trying to stress this fact ever since the NYT article came out. The trial is not just for MSS, not just for Kras mutated, you do not need to have genetic testing or HLA testing before applying.

The trial has been hard to get into for many people. The actual criteria is listed here: https://clinicaltrials.gov/ct2/show/record/NCT01174121. In simple terms, you must be younger than 70, have gone through primary chemo with oxaliplatin or irinotecan, have a life expectancy of at least 3 months, 3 or fewer brain mets, and have a tumor that they can easily remove that is bigger than 1.5cm (longest diameter). They also require a chemo break before tumor "harvest" surgery and before treatment with the cells.

Ironically, people who have been told they are not candidates for surgery because they have too many tumors in a given organ, or in multiple organs, may be ideal candidates for this surgery. Normally, a cancer surgeon is looking to remove most or all of the disease with the surgery, and won't put a patient through the ordeal of surgery if the surgery alone can't be expected to significantly increase life expectance. In this trial, they intend to leave significant disease behind to watch for remission. They will operate to remove only enough cancer cells to do their testing and lymphocyte growth. But they will not do high risk procedures and need about 2 cubic centimeters of tumor tissue, so they like to see tumors that are at least 1.5 cm diameter and prefer tumors greater than 2.0 cm.

I would love to see the NIH hospital overrun with CRC patients. The more patients they treat, the more mutation/HLA combinations they will find that work. The future is NOW and progress will only be made through treating more people.

I hope you apply and find the same success we did. Call this number to talk to the admissions nurse: (866) 820-4505
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

stu
Posts: 585
Joined: Sat Aug 17, 2013 5:46 pm

Re: TIL Immunotherapy at NCI

Postby stu » Tue Dec 13, 2016 5:35 pm

Sleen ,
I am just over the moon for you . You deserve mum of the year award for being able to keep things normal around your kids. I love the conversation with your daughter.
Kind regards,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

teri3
Posts: 343
Joined: Fri Jan 09, 2015 11:03 am

Re: TIL Immunotherapy at NCI

Postby teri3 » Tue Dec 13, 2016 7:27 pm

Oh Celine that conversation with your daughter got me....mine are older but I don't let them know how bad this is. Right now they don't need to know because I intend to beat this. Mothering done right!
Hugs
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?

AngelaN
Posts: 206
Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: TIL Immunotherapy at NCI

Postby AngelaN » Sun Dec 18, 2016 10:20 am

Hi everyone,
Time to post an update on my husband's progress in the trial...It's been a crazy month....
So he had his harvest surgery on Oct 20. Did great, home in 3 days (4 days earlier than they expected). In mid Nov we heard that his cells were not growing and they suggested we find another option. We used THE SPREADSHEET (as I fondly call it) to research other options, and landed on a trial at JHU. Interestingly, I didn't get a warm and fuzzy from them, and I started thinking we should treat his largest lung met instead. Our oncologist didn't think the science was strong, and he did some of the studies with head/neck cancer with the drug, and he agreed with me. As we were back and forth about the treatment plan (6 phone calls from the oncologist in 12 hrs - that man is amazing....) NIH sent us an email to tell us they now have cell growth! So we are moving forward with radiation for his large lung met, and are waiting another update next week for John's cells. I am a physician, so I feel sometimes that I have a faster path to pushing docs into what I think is best, but that's a blessing and a curse. We are praying every minute of every day that the cells continue to grow and we have activity against his tumor.
In the meantime we moved into a new house the week before Tgiving and are finishing up our construction of my gym this week. I don't want to delude anyone...this has been extremely stressful. Seeing the articles about the trial in the New England Journal, NY Times and the Philadelphia Inquirer have been great. We had several people forward them to me and ask if I heard of this trial and would it be good for John. I was proud to say - already enrolled, and cells are in the lab! Thanks to Celine for putting this study out there. I followed her blog for well over a year before I even told my husband there could be another option.
For those of you contemplating the trial, the process is easy and NIH is the hospital in the Garden of Eden. Feel free to PM me if you have questions or my email is angleamnicholas@gmail.com.
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn

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Sleen
Posts: 295
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Sun Dec 18, 2016 9:23 pm

Happy to see this update, AngelaN! Hoping for more (and more and more) good news :)

Celine
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 26 yrs. kids: 21, 18, 15, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

User avatar
Sleen
Posts: 295
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Sun Jan 08, 2017 12:01 pm

Happy New Year!

My tenth (Ten?!? I can hardly believe this) follow-up after TIL therapy was last week. My scans are clear; I'm still NED!

Dr. Rosenberg and I were approached by NBC to do an interview together for the Today show, and the NBC Nightly News. We each agreed, and so Joan Lunden interviewed us at the NIH last week. This show will air in early February (exact date TBD).

Cameras followed me and my docs around the NIH for two days. My participation ended at Thursday's interview, but Ms. Lunden spent more time w/Dr. Rosenberg. She put a photo on her FB wall here, of the two of them looking at my lung CT. The whole experience was pretty stressful for me (the chicken!), but overall a very positive experience.

During the interview, Dr. Rosenberg repeated several times that patients should call the NCI/NIH if they're interested in finding out more about this trial. If YOU are interested in it, and chemo with either oxaliplatin OR irinotecan has failed you I encourage you to call (866) 820-4505 BEFORE the story airs. Consider this post "insider information" ;) I think the phone lines are going to be very busy, soon after it airs.

You have to be relatively healthy to join this trial. ECOG of 0 or 1. You must be stage IV with at least 2 tumors (one to harvest, and one to track). See details on the clinicalTrials.gov website (link in sig).

I am always asked:
Q: Do I have to have your same mutation to be considered?
A: No! They try to develop a treatment based on YOUR mutation(s)

Q: Do I need to have genetic testing done before I apply?
A: No! NCI/NIH will do all of the genetic tests required.

Q: Do I need my oncologist's OK to participate?
A: No! You may self-refer (this is what I did) if you are interested in applying. You WILL need your oncologist's support to gather the required medical records.

Q: I am afraid to go off chemo for this. Do I have to?
A: NIH requires a 4 week "wash out" from chemo prior to harvest surgery, and another 4 week "wash out" prior to TIL therapy. After TIL therapy, you remain OFF chemo unless progression is found upon follow-up. BETWEEN harvest surgery and TIL therapy is a waiting period for you (and a very busy time for the researchers). If needed, patients can receive chemo while they are waiting for their treatment to be developed. This will be discussed with you at your screening visit.

Q: Does it matter if I am MSS or MSI ?
A: No! Whatever YOU bring them is what they use to try to develop a treatment.

Q: Can they use tumors from [ fill in a body part ]
A: Probably! I know they've developed treatments for patients w/TIL from tumors in liver, lymph nodes, lungs, omentum...

Q: Is anyone else offering this treatment?
A: Not at this time. Bethesda, Maryland is the one and only trial location. You would travel there for 1) screening, 2) harvest, 3) treatment, and then (we hope!) for many follow-up appointments afterward. Patient travel is reimbursed by the trial sponsor.

MORE INFO can be found at the links in my sig.

Celine
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 26 yrs. kids: 21, 18, 15, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

teri3
Posts: 343
Joined: Fri Jan 09, 2015 11:03 am

Re: TIL Immunotherapy at NCI

Postby teri3 » Sun Jan 08, 2017 12:21 pm

Thank you some much for sharing this. It was very timely for me , I see my oncologist Tuesday to see if Folfiri worked for me. Again thank you
Hugs
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?

Lee
Posts: 5156
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Sun Jan 08, 2017 1:27 pm

Celine,

That is so AWESOME and congratulations. Please keep us updated when it will air.

Again CONGRATULATIION!

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Pita
Posts: 636
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: TIL Immunotherapy at NCI

Postby Pita » Sun Jan 08, 2017 3:23 pm

Thanks for the info and Congrats on your treatment and success!!! and now becoming a TV star 8)

Have been thinking a lot about this trial since you posted about it here. Probably sounds ridiculous but I'm struggling with where it's at, across the country from me. Happy to have a time limit now, will help me with the decision to call or not.
There is a trial here close to me which I've applied for and if it falls through I now I see a few in Denver that look interesting and think I might fit where my daughter lives, that would be a much easier decision.
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin


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