TIL Immunotherapy at NCI

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EverySunriseCounts
Posts: 19
Joined: Sun Jan 17, 2016 1:25 pm

Re: TIL Immunotherapy at NCI

Postby EverySunriseCounts » Thu Apr 28, 2016 7:31 pm

That is an awesome story, Sleen! Love that you now have the evil beast in a freezer in case you ever need treatments against it again. Please keep us posted on the findings. So happy you've reached the land of NED.....
Partner:
-Diagnosed with Stage IV CRC 09/14, liver,lymph mets
-Started Folfox
- Emergency surgery 10/14, removed colon tumor, temp ileostomy
- New abdominal tumor 05/15 changed to Folfiri
- Added Avastin 09/15
- Stable scan (liver mets still present) 11/15
- Stable scan 02/16; chemo halted 03/25
-Ostomy reversal 05/16

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: TIL Immunotherapy at NCI

Postby vilca11 » Sat Apr 30, 2016 1:07 pm

Fantastic, incredible, unbelievable - no words!!!! Congratulations, dear Celine, this is an inspiration for the whole forum crowd, heal, be well and LIVE.... Hugs and mucho amor, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: TIL Immunotherapy at NCI

Postby jortego128 » Sat Apr 30, 2016 3:35 pm

Incredible news, simply miraculous. It sounds like they are on top of this thing and have the gun loaded and ready to shoot should it rear its ugly head again. Im so glad for you. I thank God for the incredible response you've had.

Josh
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

spinka
Posts: 3
Joined: Wed May 11, 2016 1:40 pm

Re: TIL Immunotherapy at NCI

Postby spinka » Wed May 11, 2016 1:56 pm

I am so glad to have found this thread and thankful for the information Celine has shared with everyone. I have been following this trial since last summer (as I waited to progress on first line therapy, CAPOX-Bev, which happened just recently). Unfortunately, as I was about to go in for eligibility screening I was informed all trials were being halted because of this:
http://www.npr.org/sections/health-shot ... h-hospital
After I could not find out much, my oncologist called them and was told there was a fungal contamination, which is not something we don't know from the publicized info already. Generally, they are not releasing a ton of detail. I am wondering if anyone is also affected by this and / or may have heard about the timeline that they are working with to resume trials etc. Thank you!
************
6/2015 Dx Stage IV CRC @ 34 yo. MSS, KRAS-WT, BRAF-mut, p53-mut, moderately differentiated
6/15 CAPOX-Bev
1/16 Stopped Oxaliplatin due to neuropathy, CAP-Bev continues, stable disease
4/16 Disease progression, maintain CAP-Bev while awaiting screening for TIL at NCI (trial on hold)
6/16 about 10% tumor growth (biggest 4cm in liver), TIL trial reopening, going in for screening

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Sleen
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Thu May 12, 2016 7:23 am

I just got back from NIH yesterday, and this is the info I was told:

The initial (fungal) contamination was found in the pharmacy--not any of the labs.
As a result of that, NIH voluntarily had all of the labs tested for any problems. Upgrades are now underway that affect only the labs which are involved with any patient-infused materials.

They hope to be up-and-running four weeks from now, however, this timeline is heavily dependent on whether or not equipment gets delivered on schedule.

Enrollment of new patients has been halted until the changes have been implemented and tested.

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: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

spinka
Posts: 3
Joined: Wed May 11, 2016 1:40 pm

Re: TIL Immunotherapy at NCI

Postby spinka » Thu May 12, 2016 11:29 am

Thank you, Celine! This is the most complete information I got from anyone. Fingers crossed. I hope your surgery recovery goes smoothly and the tumors keep shrinking. Your positive attitude is awe inspiring.
************
6/2015 Dx Stage IV CRC @ 34 yo. MSS, KRAS-WT, BRAF-mut, p53-mut, moderately differentiated
6/15 CAPOX-Bev
1/16 Stopped Oxaliplatin due to neuropathy, CAP-Bev continues, stable disease
4/16 Disease progression, maintain CAP-Bev while awaiting screening for TIL at NCI (trial on hold)
6/16 about 10% tumor growth (biggest 4cm in liver), TIL trial reopening, going in for screening

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: TIL Immunotherapy at NCI

Postby ronswife » Fri May 13, 2016 4:12 pm

I am FASCINATED by this info! I wonder if my husband could qualify for this?

:?: :D
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

saffa
Posts: 19
Joined: Sun Nov 15, 2015 7:20 am
Facebook Username: Alexandra bergs

Re: TIL Immunotherapy at NCI

Postby saffa » Mon Jun 06, 2016 5:09 pm

I chatted to Ellen from the immunotherapy section at the NIH today and she was really great

The trial was still not open for recruitment but she said although they couldn't give me a time frame, I should check back in in two weeks or and with a bit of luck we would be up and running again.

She also mentioned that as I am only on my second line of chemo they would only consider my case as soon as I had progression on this chemo and not before then (understandable since the procedure is experimental).

She asked me if to my knowledge I had any easily respectable sites - mentioning that a lymph node nearest to surface would be ideal, with liver or lung coming second to that. Since I have had HAI my liver would not be an option for getting a tumour sample.

She also confirmed that prior immunotherapy use (PD-1 or MEK inhibitors) would not be exclusion criteria from the trial even with the Keytruda being added into the trial currently. So although I think this a fantastic trial this would almost steer me towards trying an immunotherapy combo out before heading to the trial, although the fact you need to be quite healthy for this trial is something I need to bare in mind.

She mentioned to me that extensive liver involvement was a basis for exclusion from the trial owing to time off chemo that it would require (pre tumour sample extraction and pre infusion - 30 days in each case).

I am still really keen for this trial but there are definitely certain aspects that scare me a bit!
25 yo Female diagnosed 10/10/15 Stage IV (sigmoid primary and liver mets inoperable)
KRAS-mut (G12V) Tp53-mut MSS
Folfox 10/15-04/16
HAI/LAR @ MSK 02/16
CEA rising
Lung nodules confirmed 05/16
Switch to Folfiri/FUDR/Mitomycin 05/16
Looking for clinical trials
CEA dropped from 842 (05/02/16) to 257 (06/29/16) - scan confirms liver and lung shrinkage

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: TIL Immunotherapy at NCI

Postby ronswife » Mon Jun 06, 2016 5:45 pm

Well, my hubby does NOT qualify for this trial since he has very heavy liver involvement!

:(
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

saffa
Posts: 19
Joined: Sun Nov 15, 2015 7:20 am
Facebook Username: Alexandra bergs

Re: TIL Immunotherapy at NCI

Postby saffa » Mon Jun 06, 2016 5:52 pm

Ronswife,

It can't hurt to send scans anyway and try! I have pretty extensive involvement as well!
25 yo Female diagnosed 10/10/15 Stage IV (sigmoid primary and liver mets inoperable)
KRAS-mut (G12V) Tp53-mut MSS
Folfox 10/15-04/16
HAI/LAR @ MSK 02/16
CEA rising
Lung nodules confirmed 05/16
Switch to Folfiri/FUDR/Mitomycin 05/16
Looking for clinical trials
CEA dropped from 842 (05/02/16) to 257 (06/29/16) - scan confirms liver and lung shrinkage

spinka
Posts: 3
Joined: Wed May 11, 2016 1:40 pm

Re: TIL Immunotherapy at NCI

Postby spinka » Mon Jun 06, 2016 10:41 pm

Hi Saffa,

Thank you for sharing the update regarding the lab closure. That is more or less consistent with what Celine said a little while back. I have been on pins and needles about this a little bit, since I have not had any IV chemo since January, only Xeloda and things are slowly starting to grow. I will be calling them next week, just to see if I need to skip the upcoming Avastin, which would be wise, if the reopening of the trial is pending.

Do you mind me asking who is Ellen? I have been in touch with Jessica and when I inquired about the lymph nodes, she said they tend to not do those (although she did not say why). I will press her on it a bit more next time we talk. I wonder if size is an issue?

Thanks!
Last edited by spinka on Tue Jun 07, 2016 3:35 pm, edited 1 time in total.
************
6/2015 Dx Stage IV CRC @ 34 yo. MSS, KRAS-WT, BRAF-mut, p53-mut, moderately differentiated
6/15 CAPOX-Bev
1/16 Stopped Oxaliplatin due to neuropathy, CAP-Bev continues, stable disease
4/16 Disease progression, maintain CAP-Bev while awaiting screening for TIL at NCI (trial on hold)
6/16 about 10% tumor growth (biggest 4cm in liver), TIL trial reopening, going in for screening

User avatar
Sleen
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Jun 07, 2016 11:20 am

Not Saffa, but
This is contact info for the current referral nurses at NIH:
Jessica Yingling: yinglingj@mail.nih.gov <-- if this email bounces, try: ncisbirc@mail.nih.gov
Ellen Bodurian: ellen.bodurian@nih.gov...

I emailed my fellow, and the research fellow last week, hoping for some "scoop" about when the trial might re-open. They both estimated "July", but of course that is just their guess. If you're interested in the trial DO CALL or email to see whether any preliminary data-gathering can be done on the patient end of things.

They can (and have) used tumors from lymph nodes, lungs, liver, etc. it is a matter of size and location. They want to do the least-invasive surgery possible, to ensure the patients' safety and readiness to undergo the trial.

Celine
Last edited by Sleen on Thu Jun 23, 2016 9:31 am, edited 2 times in total.
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: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: TIL Immunotherapy at NCI

Postby ronswife » Tue Jun 07, 2016 1:00 pm

Thanks Sleen for the email addresses!

:D
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

User avatar
Sleen
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Jun 22, 2016 6:35 am

Got an email from my NIH fellow yesterday. The TIL trial has re-opened, finally. Here's a quote from my doc: "A practice run is going on in the cell lab. If it goes well, we are tentatively planning to start the first patient treatment the first week of July."

The link to the trial is 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 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: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

crazylife
Posts: 255
Joined: Wed Dec 30, 2015 11:29 am

Re: TIL Immunotherapy at NCI

Postby crazylife » Wed Jun 22, 2016 11:39 am

Hi!

Anyone get an undeliverable message?
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018


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