TIL Immunotherapy at NCI

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DAS43
Posts: 53
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Sat Sep 29, 2018 1:36 pm

I was at NIH on Thursday and receive some great news everything is the same. although they think the tumor in my lung may have once again shrank they definitely believe that it is fading. I was shocked when the doctor told me it was my 18th month since I received my TILs. wow how fast time goes by. They have now moved me out to 6 months before I need to go back.
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

DAS43
Posts: 53
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Sat Sep 29, 2018 1:38 pm

Sleen wrote:Checking in to report that follow-up FOURTEEN was all good. I am still NED. :) :) :)
Next follow-up in six months.

Celine

Yay sleen great news
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

sdino
Posts: 72
Joined: Tue Mar 28, 2017 5:32 pm

Re: TIL Immunotherapy at NCI

Postby sdino » Mon Oct 01, 2018 7:05 am

DAS43 wrote:I was at NIH on Thursday and receive some great news everything is the same. although they think the tumor in my lung may have once again shrank they definitely believe that it is fading. I was shocked when the doctor told me it was my 18th month since I received my TILs. wow how fast time goes by. They have now moved me out to 6 months before I need to go back.

Most excellent news DAS !
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-2.3CM
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/16 to 1/8/17
CT Scans: 5/17 colon & lung met shrinkage,11/17 to 7/19 slight progression
iTCR TIL Trial NCT03412877 4/19 to 5/19 Off trial, - Sept. 2019 doing Original TIL trial NCT01174121
CEA:16-11/16; 0.6-5/17; 5.1-9/18; 5.4-10/18; 26.9-7/19

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Sleen
Posts: 314
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Mon Oct 01, 2018 8:21 am

Wow! So happy for you, DAS!!!

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

DAS43
Posts: 53
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Thu Mar 14, 2019 3:23 pm

I can't believe it but it's TRUE. It's been 2 years since I received my cells!. My follow up was today and praise the lord everything remains the same. I will follow up in 6 months.
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

stu
Posts: 1223
Joined: Sat Aug 17, 2013 5:46 pm

Re: TIL Immunotherapy at NCI

Postby stu » Thu Mar 14, 2019 4:26 pm

Lovely news .
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
Oct 2018. Another clear scan .

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: TIL Immunotherapy at NCI

Postby NHMike » Thu Mar 14, 2019 5:38 pm

You guys are pioneers in this treatment which I hope gets developed for far more mutations.
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 Immunotherapy at NCI

Postby teri3 » Thu Mar 14, 2019 8:54 pm

Best news ever! Keep it up.
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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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: TIL Immunotherapy at NCI

Postby LPL » Fri Mar 15, 2019 3:11 am

DAS43 wrote:I can't believe it but it's TRUE. It's been 2 years since I received my cells!. My follow up was today and praise the lord everything remains the same. I will follow up in 6 months.

So Happy for you DAS :D
Thank you for updating us.
Big Congratulations !!!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

DAS43
Posts: 53
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Fri Sep 06, 2019 8:29 am

I was at NHI Wednesday and Thursday. Unfortunately I don't have great news it's not bad news but it's not great either it seems that the tumor that they are following has changed it still has the same dimensions .9 cm by .4 cm but instead of being a light gray smudge on the CT scan it is now starting to turn white again although it hasn't really changed its dimensions. Also my cea which has been steady at 0.8 is now a 1. At this point the team seems to think that we should just watch it for the next few months. I will go back in 4months and have a CT scan.they may possibly take it out if it does any more changing. It's been kind of hard for me to digest. I've gone two and a half years with no chemo feeling great and now here I am again facing having more surgeries and more cancer treatments but I'm going to have faith the Lord will protect me and heal me .
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

hopefulandstrong
Posts: 58
Joined: Fri Apr 19, 2019 7:11 pm

Re: TIL Immunotherapy at NCI

Postby hopefulandstrong » Thu Sep 12, 2019 7:29 pm

Hi all -

And congratulations to those of you who have been pioneering this therapy. It seems quite promising. So promising,in fact, that I wonder why more of us aren't on it.

I see a new phase of the trial began last year. Do you know if they are still accepting patients? Also, my research suggests that BRAF mutations are not excluded.

Have read all your prior posts. Any new stories about experience with this, including not to it?

Thanks,
54, female
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)

bitchslapped
Posts: 1525
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: TIL Immunotherapy at NCI

Postby bitchslapped » Sat Sep 14, 2019 1:16 pm

DAS43,

Was thinking the other day that no one has updated this thread in quite awhile, then "poof" here you are. That is a bit "unsettling" news for you, disappointing to be sure, but the details you provided are certainly curious.
Thanks for the update & hope you come back after your next CT w/another update.
Hang in there.

Best Wishes,

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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Sleen
Posts: 314
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Mon Sep 23, 2019 11:25 am

Hello DAS,

Sorry to read about that tumor--hopefully you will have surgery and then NO WORRIES.
You might remember that I also had a non-responding tumor. It was concerning to watch it get bigger every time they scanned, but they did ultimately remove it, and I think that's what they'll do for you, too.

Wishing you ALL THE LUCK!

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


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