At Slight Crossroads and NCT01174121

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sdino
Posts: 81
Joined: Tue Mar 28, 2017 5:32 pm

At Slight Crossroads and NCT01174121

Postby sdino » Thu Jul 27, 2017 11:41 am

Well – Might be at a minor crossroads here. Wife was doing 12 rnds of FolFox+Avastin+Oxi and seen decent results during the chemo regiment. Coming off a Chemo break of 2.5 months, yesterday’s CT scan showed progression of disease in Colon/Lungs. CEA up from 0.6 to 2.6. Essentially we are at the starting point of Dx in November 2016 in relationship to size of Tumors/Mets. All ground gained on shrinkage has been overturned. Good news is no New areas of disease development.

Uploaded results to NIH/NCI today (Dr Rosenburg’s Office) and they are going to see if there are enough lesions that they can resect to include her in Clinical Trial NCT01174121 : "A Phase II Study Using Short-Term Cultured, Autologous Tumor-Infiltrating Lymphocytes Following a Lymphocyte Depleting Regimen in Metastatic Cancers Plus the Administration of Pembrolizumab ". Adherent problem is Roswell Park Onc wants to giddy up on Capecitabine + Bevacizumab in Early August 2017. No OXI (neuropathy). One Problem is, NCI would like to start clinical study BEFORE next line of chemo treatment. So I believe we will hold off chemo until we hear from NCI. NIH/NCI surgeons promised a quick review of all data. If we are accepted for clinical trail, we are looking at months down the road (cell harvesting, ect ect. ).

Questions/concerns – Do we take the risk of the Clinical Trial now or go back to Chemo that we know knocks it down… BUT appears not to be the final solution? Has anybody had luck in this trial NCT01174121 they can speak of first hand ? (I will of course search this forum). Thank you all in advance. sdino
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-4.0cm
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/2016 to 2/2019
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 1/2020 lung met shrinkage 36%, Liver & Brain met shrinkage 90%
CEA:16-11/16; 5.1-9/18; 63.6-8/19; 1.2.9-1/20

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DH2Sleen
Posts: 81
Joined: Thu Jan 29, 2015 10:10 am

Re: At Slight Crossroads and NCT01174121

Postby DH2Sleen » Thu Jul 27, 2017 11:53 am

My heart rate doubled when I read you post. Sleen's status was almost exactly like your wife's. I think you are right to hold off more chemo until you've given TIL a shot. Take a look at Sleen's blog http://www.cancerriot.blogspot.com. The ironic thing about this trial is that you need to be fairly healthy (while terminally ill) in order to do it. PM me if you would like to discuss.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
9/2013 colectomy
10/2013 - 3/2014 FOLFOX
4/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
3/2015 enter TIL trial @ NIH
7/1/15 Receive 148E9 cells to target K-ras G12D mutation
8/11/15 Reduction=18%, no new tumors
9/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
1/26/16 46% but one suspicious met
3/24/16 46% but one growing
4/7/16 Lung lobectomy NED for the first time
3/3/20 Still NED "cured"

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

Re: At Slight Crossroads and NCT01174121

Postby Sleen » Thu Jul 27, 2017 1:33 pm

Hi sdino,

I started a thread here regarding TIL therapy. You can find it here

I am 2 years out from TIL treatment, and NED because of TIL + surgery. See my signature for other links/info.

Celine (aka Sleen)
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.

sdino
Posts: 81
Joined: Tue Mar 28, 2017 5:32 pm

Re: At Slight Crossroads and NCT01174121

Postby sdino » Thu Jul 27, 2017 3:03 pm

Hi Sleen and SleenDH2. Thank you for your timely responses. It is uncanny how close the Genetics match up is between us, First and foremost Sleen, I wish you the continue positive success you are seeing on this trial ! Fantastic ! I will review your blog and threads to educate myself more on your Journey. On a side note, I've been copied on an e-mail chain from the NIH/NCI IT Department and.... the CT scan I uploaded this morning to them has been forwarded to their Surgeons just now. I will definitely reach out to you in the future once I know what direction we are heading in. Thank you with all my heart ! Steve D
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-4.0cm
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/2016 to 2/2019
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 1/2020 lung met shrinkage 36%, Liver & Brain met shrinkage 90%
CEA:16-11/16; 5.1-9/18; 63.6-8/19; 1.2.9-1/20

sdino
Posts: 81
Joined: Tue Mar 28, 2017 5:32 pm

Re: At Slight Crossroads and NCT01174121

Postby sdino » Wed Aug 02, 2017 10:43 am

Quick update from NIH/NCI on 8/2/2017:

8/2/17 - Spoke w/Dr Rosenberg’s Nurse. Here are NIH/NCI recommendations moving forward:
• Last CT scan 7/26/17 shows enough of a lung met for them to resect. However their Surgeon is not available until Mid Sept 2017. This is too long to wait since we have seen some disease progression during chemo break.
• NCI is happy that the Folfox + Avastin is working (NOT a Cure), and it is in their opinion that it is keeping things at bay and they feel it’s somewhat a slow moving cancer right now, they recommend going back on chemo immediately @ Roswell (start Capecitabine + Bevacizumab on 8/7/17) and revaluating after 3 months when a new CT Scan will be completed.
• They also explained that this clinical trial NCT01174121 is still highly experimental and has been ongoing and work in progress. They are always tweaking it for individual mutation needs for different people. (Which is real good thing for targeting specific genetic makeup).

So we can wait for a month and half with no Chemo and go to NCI, but my Wife and I and NCI agree it’s to risky for disease progression. I’m at the place that since Chemo is currently working, stay on it for now, revaluate in 3 months and keep this clinical trial in our back pocket when it may be really needed.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-4.0cm
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/2016 to 2/2019
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 1/2020 lung met shrinkage 36%, Liver & Brain met shrinkage 90%
CEA:16-11/16; 5.1-9/18; 63.6-8/19; 1.2.9-1/20

sdino
Posts: 81
Joined: Tue Mar 28, 2017 5:32 pm

Re: At Slight Crossroads and NCT01174121

Postby sdino » Sat Dec 16, 2017 10:21 am

The crossroads has been .... CROSSED. We visited NCI/NIH last week for prescreening processes (Brain MRI, Blood work, pul function test, CT scan(s) review, chest Xray, exams), met with the Clinical Nurses- RN's Nixon and McIntyre, Fellow Dr Shindorf, Dr Yang-Lead doctor and Surgeon Dr Ripley - All Fantastic people! I was blown away by their knowledge and sincere caring. They will decide this upcoming Monday 12/18/17 with the entire Team if my Wife will be accepted into the Trial and Lung Surgery (wedge or removal of left lower lobe) in early-mid January 2018. Boy, I REALLY have my fingers double-stitched cross !
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-4.0cm
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/2016 to 2/2019
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 1/2020 lung met shrinkage 36%, Liver & Brain met shrinkage 90%
CEA:16-11/16; 5.1-9/18; 63.6-8/19; 1.2.9-1/20

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: At Slight Crossroads and NCT01174121

Postby Robino1 » Sat Dec 16, 2017 12:14 pm

I am so crossing my fingers also for you!!

That would be an awesome Christmas gift! :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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

Re: At Slight Crossroads and NCT01174121

Postby DAS43 » Sat Dec 16, 2017 12:15 pm

I just had my follow up there. It is working great for me. I will be praying for great results for your wife
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

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: At Slight Crossroads and NCT01174121

Postby mypinkheaven » Sat Dec 16, 2017 1:18 pm

DAS43 wrote:I just had my follow up there. It is working great for me. I will be praying for great results for your wife


You're having shrinkage on the TIL trial? 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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

Re: At Slight Crossroads and NCT01174121

Postby DAS43 » Sun Dec 17, 2017 11:33 am

Mypinkheaven

Yes I went to NIH last week of Feb 2017. Received my cells 1st week of March. In August my tumor had shrunk 49%. I just had a follow up Thurs. My Tumor hasn't shank anymore but it isn't as bright as it was it looks like it was smudged. The great thing about this trial is that as li g as there is no new growth I do nothing. No chemo! I will go back in 3 months for testing.
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

Lee
Posts: 6047
Joined: Sun Apr 16, 2006 4:09 pm

Re: At Slight Crossroads and NCT01174121

Postby Lee » Sun Dec 17, 2017 5:33 pm

Fingers crossed for good luck tomorrow.

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!

sdino
Posts: 81
Joined: Tue Mar 28, 2017 5:32 pm

Re: At Slight Crossroads and NCT01174121

Postby sdino » Mon Dec 18, 2017 9:54 pm

My Wife has been accepted into the trial. Surgery to resect lung mets slated for Jan 10th.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-4.0cm
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/2016 to 2/2019
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 1/2020 lung met shrinkage 36%, Liver & Brain met shrinkage 90%
CEA:16-11/16; 5.1-9/18; 63.6-8/19; 1.2.9-1/20

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: At Slight Crossroads and NCT01174121

Postby Robino1 » Mon Dec 18, 2017 10:15 pm

Great news! Praying for a positive response.

Enjoy the Holidays. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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CRguy
Posts: 10172
Joined: Sun Feb 10, 2008 6:00 pm

Re: At Slight Crossroads and NCT01174121

Postby CRguy » Mon Dec 18, 2017 10:16 pm

WORD !!!!!!!!

best wishes moving forward now you have the plan in place

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

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: At Slight Crossroads and NCT01174121

Postby rachel2017 » Mon Dec 18, 2017 11:13 pm

sdino wrote:My Wife has been accepted into the trial. Surgery to resect lung mets slated for Jan 10th.


That is a wonderful Christmas gift and wish everything will work on your wife!
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo


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