TIL trial at NIH going for initial testing

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teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

TIL trial at NIH going for initial testing

Postby teri3 » Sat Apr 21, 2018 12:14 am

I'm to be at NIH 6 am Monday for my initial testing for the TIL trial. Who else has gone and can you give me some idea what to expect? I know the first day is all scans and pulmonary testing, then meeting with team Tuesday and Wednesday met thoracic surgeon. I'm pretty excited.
Thanks
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 :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

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betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: TIL trial at NIH going for initial testing

Postby betsydoglover » Sat Apr 21, 2018 3:23 pm

Hi -

I know nothing about this trial. But I was evaluated for a clinical trial there in 2006. The place is amazing. Everyone is SO nice - starting with the front desk. It's the Ritz of medical facilities! No discussion of $$ (refreshing in the medical context!). It seems all about you (because of course they do want you if you qualify). The vibe is wonderful. The social worker(s) is/are great - since I am local, we just talked, but for out of towners, they have lots of help to offer.

I wish you luck - I know you will find it to be a quality experience.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: TIL trial at NIH going for initial testing

Postby NHMike » Sat Apr 21, 2018 6:06 pm

They're doing great things at NCI with this and I wish the best for you with this trial.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: TIL trial at NIH going for initial testing

Postby teri3 » Sat Apr 21, 2018 11:10 pm

Thank you Betsy for your insight into the facility. That sounds like as minimally stress less as possible. So far anyone I've talked to seem beyond nice and helpful.
Nhmike thanks for the encouragement.
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 :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

sdino
Posts: 85
Joined: Tue Mar 28, 2017 5:32 pm

Re: TIL trial at NIH going for initial testing

Postby sdino » Mon Apr 23, 2018 11:37 am

Hi teri3 - In my general laymen terms -
Typically the NCI Team will review all your results, they have a meeting the following Monday and make a decision if you’re a good candidate for the trial or not. Also, If it’s a go, they will request you to be off Chemo at least 30 days prior to surgery. Surgery/recovery at NCI will take approx. 2 to 3 days, then wait 2 more days and do a Apheresis on your blood system.

After surgery, you then go home while they grow billions of cells tumor-infiltrating lymphocytes (TIL). One can go back on chemo. Here is the BIGGEST Catch or Go-No Go: 1. they must grow billions of these cells and 2. The TIL’s (lymphocytes) MUST have genetic mutation(s) (REACTIVE) in them that the tumor cells have or it’s a No Go on trial. If a GO, we then return to NCI in 3 months or so for 1 week of “killer chemo” to destroy the immune system and then rebuild/inject with the new TIL’s. One can become ill from the chemo process and reinjection of new immune system. (4 to 6 week hospital stay @ NCI) This was under the older version of the TIL trial NCT01174121.

There is a New TIL trial NCT03412877 that just opened up this month. Everyone will be looked at for this trial if you meet the criteria. This is very similar to the TIL trial but with the cells coming from peripheral blood and modified with T-cell receptors from tumor TIL. It takes several more months to grow than the old trial and make them REACTIVE in this new trial. What they found in the older trial is that the TILs become old, tired and lethargic. This trial energizes them to continue to fight cancer cells and since they are personalized to you, there is more options or “Keys” for the lymphocytes to lock into her cancer cell genomes (neoantigens) and destroy them. Older TIL trial has an effective rate of 20-25% on other cancers, while this new TIL trial is seeing 40-45% success rate on other cancers.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: 25+ Bilateral ranging 4mm-5.0cm
MSS, KRAS-G12D; TP53
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 7/2020 lung met shrinkage 36%, 3 lung mets left, two Liver mets destroyed by TILs
Brain tumor removal 3/2020
CEA:16-11/16; 5 -9/18; 63 -8/19; 1 -1/20; 0.8-5/20

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: TIL trial at NIH going for initial testing

Postby teri3 » Fri Apr 27, 2018 10:11 pm

Thank you sdino. I'm waiting for my call Monday, I'm pretty excited and nervous. I believe things went well but you never know. I liked the nurse I'm assigned, Lori and my fellow Dr. Shindorf both very nice and helpful. My attending will be Dr.Goff.
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 :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

Geoman
Posts: 19
Joined: Sun Apr 29, 2018 8:48 pm

Re: TIL trial at NIH going for initial testing

Postby Geoman » Wed May 02, 2018 9:57 pm

betsydoglover wrote:Hi -

I know nothing about this trial. But I was evaluated for a clinical trial there in 2006. The place is amazing. Everyone is SO nice - starting with the front desk. It's the Ritz of medical facilities! No discussion of $$ (refreshing in the medical context!). It seems all about you (because of course they do want you if you qualify). The vibe is wonderful. The social worker(s) is/are great - since I am local, we just talked, but for out of towners, they have lots of help to offer.

I wish you luck - I know you will find it to be a quality experience.

Take care,


Hi. I am a new member. Dx with rectal/liver mets in 2016. NED and praying daily to stay that way! I am sorry to interupt this thread with an off topic issue but I had a question for betsydoglover concerning avastin use detailed in her signature line. I could not figure out how to PM so I thought this way might be an option. I was curious about the use of avastin only for such a long time. Would you mind sharing what led to this?

Teri3 i wish the best for you with this trial.
Dx @ 44, rectal cancer-stage 4 with Mets to liver 8/16
CEA 19
Kras g12d; Braf
Ypt3,ypN1a,ypM1
5 rounds 5fu with avastin (4) 9/16-11/16
PVE/Liver Resection 12/16
28 days rad/xeloda 2/17-3/17
APR-4/17
Clear Margins
7 rounds 5Fu with avastin- 5/17-8/17
CEA-1.2
NED-12/17, 1/18,
Multiple spots in lungs-5/18

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: TIL trial at NIH going for initial testing

Postby Shana » Thu May 03, 2018 6:19 pm

Good luck Teri!

Wishing you all the success in the world. Your participation in this trial will help so many others as well as yourself. I'm sure you are excited, I hope everything goes smoothly for you. Please keep us in the loop as things progress.

Will be following closely and cheering for you! :D

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: TIL trial at NIH going for initial testing

Postby teri3 » Fri May 04, 2018 12:57 am

I will Shana!
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 :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(


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