TIL Immunotherapy at NCI

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

Re: TIL Immunotherapy at NCI

Postby Lee » Wed Feb 12, 2020 1:22 pm

sdino,

AWESOME news!!

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 - 16 years and counting!

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Sleen
Posts: 317
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Feb 13, 2020 9:08 am

I was MSS too, Claudine!
Don't brush it off.
When "they" say immunotherapy doesn't work for MSS, they are talking about infused agents like Keytruda, and Yervoy, etc.

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 2014 confirmed 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: 26, 23, 19, 14, 12
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

Gravelyguy
Posts: 378
Joined: Thu Jul 05, 2018 6:03 pm

Re: TIL Immunotherapy at NCI

Postby Gravelyguy » Thu Feb 13, 2020 9:49 am

sdino wrote:Update 1/24/20: 18 week follow-up at Bethesda Trial NCT01174121, Some good news ! It appears the Tumor Inflitrating Lymphocyctes (TILs) are still Marching. My Wife showed SIGNIFICANT Shrinkage in her lung lesions. However several large "older" ones remained unchanged (which they said is sometimes expected from Older Grandma tumors). No new metasis and no new growth. The Brain tumor has shrunk 95% = almost GONE ! and one liver lesion is Gone and the other liver lesion previously 1.0 cm shows a 90% reduction. So…. the TILs are being systemic meaning they are not confined to only one organ.



That is great news. Thanks for the update!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: TIL Immunotherapy at NCI

Postby Claudine » Thu Feb 13, 2020 10:01 am

Sleen wrote:I was MSS too, Claudine!
Don't brush it off.
When "they" say immunotherapy doesn't work for MSS, they are talking about infused agents like Keytruda, and Yervoy, etc.

Celine


SO GOOD to know that there are still many options out there! Thank you and I hope you stay NED forever :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

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Sleen
Posts: 317
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Mon Apr 13, 2020 7:52 am

Checking in to say Follow-Up 16 happened at the beginning of March.
Still NED! I requested annual visits going forward, and they said "OK." woot!

I hope you all are staying safe and sheltered.

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 2014 confirmed 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: 26, 23, 19, 14, 12
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

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CRguy
Posts: 10377
Joined: Sun Feb 10, 2008 6:00 pm

Re: TIL Immunotherapy at NCI

Postby CRguy » Mon Apr 13, 2020 12:25 pm

THAT is mega spectacular news my friend !!!!!!!

Thank you so much for staying on forum to keep us updated AND to help new members.

Harmony on the Journey
CRguy

Hunker down
Shelter in place
keep on keepin'
Covid SAFE !
- CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
15 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DAS43
Posts: 55
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Tue Jun 02, 2020 9:09 pm

Was seen at NIH 5/27 and 5/28/20. The tumor is still growing it is almost at 1cm. The good news is that there continues to be no new matastises. The plan is for me.to go back in Sept and they will do test for surgery and I will meet with surgeon. I am not happy about waiting that long but with covid 19 they feel it would be safer waiting till lower cases. I continue to worry about this tumor creating new matastises, butt the doctors dont believe this will happen. They seem perplexed as to why it shrank 75% then started growing again. Hopefully when it is removed they will be able to get the answer.
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
10/16 trial at NIH TIL
9/17 partial responder to TIL protocol

Cured
Posts: 574
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: TIL Immunotherapy at NCI

Postby Cured » Fri Jun 05, 2020 6:05 pm

Thanks for sharing this.
I asked my Onc if I can join this trial.
Not that I wanted to be old and metastatic
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3,2.3.4.8,8.4,9.1,10,18
12 rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumor gth =Folfiri

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Jack&KatiesMommy
Posts: 639
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: TIL Immunotherapy at NCI

Postby Jack&KatiesMommy » Sun Jun 07, 2020 6:48 pm

Sleen wrote:I was MSS too, Claudine!
Don't brush it off.
When "they" say immunotherapy doesn't work for MSS, they are talking about infused agents like Keytruda, and Yervoy, etc.

Celine


I am MSS with a moderate tumor burden identified in my tumor. My local oncologist had seen some new research that indicated that tumors with high tumor burden responded to Keytruda and Yervoy and got approval to ty it with me when chemo stopped working for me and the cancer was spreading in the lymph nodes near my lungs. I started Keytruda in May 2017. That was over 2 years ago. I have been NED since my third Keytruda infusion. So actually infused agents like Keytruda can work for some MSS patients too! (And I have been fortunate enough to have almost no side effects other than some fatigue.)

Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

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

Re: TIL Immunotherapy at NCI

Postby sdino » Fri Jun 19, 2020 8:06 am

UPDATE 6/18/20 on my Wife: NCT01174121 TIL infusion 9/20/19. Brain resection one met 3/13/20. Two liver lesions destroyed by TILs in early 2020. Brain and Abdomen MRI's at UPMC on 5/27/20 reveal no metasis in either Brain or Liver. CT scan chest on 5/27/20 By Dr. Rosenberg’s measurements her target lung lesions were smaller by 34.91%, which qualifies her as a partial responder (PR).
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

Cured
Posts: 574
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: TIL Immunotherapy at NCI

Postby Cured » Fri Jun 26, 2020 8:08 pm

Sdino- Good to hear that your wife responded to the treatments. Hope she continues to do better.

My Onc hated me asking about the trials(he can’t offer them) and doesn’t want to talk about TIL.
I copied Cynthia’s successful use of Keytruda and likewise: as if I have no business putting my nose into investigating options. So I am assigned to a different Onc at the same cancer center. Fortunately I am checking back with MSK for their insight on Immunotherapy; which makes my wife feel better.

Hopefully I get good news on my next scans: and discover that the second-line treatment I’ve been doing has worked. Then don’t need the third-line treatment.
Theoretically there is a Plan for each patient and the patient should know what that looks like .....and more than 1 or 2 weeks ahead.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3,2.3.4.8,8.4,9.1,10,18
12 rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumor gth =Folfiri

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Sleen
Posts: 317
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Apr 27, 2022 3:43 pm

Follow-up #18 happened yesterday at NIH.
I am still NED!
My former lab guru is continuing his work with TIL, now at Providence in Portland, OR.
NIH now has a dedicated lab, in a separate facility on the NIH campus--no more contamination shut-downs!!!

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 2014 confirmed 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: 26, 23, 19, 14, 12
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: TIL Immunotherapy at NCI

Postby MadMed » Wed Apr 27, 2022 5:52 pm

Wow, this is really awesome. Thank you!
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

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CRguy
Posts: 10377
Joined: Sun Feb 10, 2008 6:00 pm

Re: TIL Immunotherapy at NCI

Postby CRguy » Wed Apr 27, 2022 10:24 pm

Hey homie GREAT news
Keep kickin' colorectal BUTT

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
15 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

Re: TIL Immunotherapy at NCI

Postby prayingforccr » Thu Apr 28, 2022 7:29 am

I have asked my Drs (Dr Formenti and Dr Chachoua) if TIL is something available and appropriate for me.

On the hunt now. Thank you and congratulations from the bottom of my heart.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months…..most showing cavitation.


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