TIL Immunotherapy at NCI

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

Re: TIL Immunotherapy at NCI

Postby DAS43 » Sat Aug 27, 2016 8:32 am

My paper work is in at NIH. Waiting to here from them. In the meantime, I had Dr apt with surgeon Fri. He said all 3 lung mets could be removed with 2 surgeries. Then back to chemo. Not sure which way to go. Although I am strongly leaning towards NIH if they accept me. My thought is if it came back once it will keep popping up. How many body parts can they keep cutting out? Lol.
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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Sleen
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Sat Aug 27, 2016 5:43 pm

DAS43 wrote:How many body parts can they keep cutting out?

I hear you! :)

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.

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Tue Aug 30, 2016 8:45 am

I am still waiting for my scans etc to get to NCI, but have talked to Jessica...my current Dr is not ready for me to go through that yet and would like to see another scan on the Keytruda...
I will keep you posted on my qualifications for the trial. Sleen you are their hero! And ours!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

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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 Sep 01, 2016 4:49 pm

Wonderfullymade wrote:my current Dr is not ready for me to go through that yet and would like to see another scan on the Keytruda...

Just so long as you recognize that it is YOUR life and YOUR decision. If you want to go for a trial, your oncologist should respect that and support you. That said, one more scan doesn't seem unreasonable, but I'd be drawing a line in the sand right about now ;) "If Keytruda isn't working, I want to try something else..."

Thanks for keeping us updated!

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.

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Wed Sep 07, 2016 3:28 pm

I just heard back...the surgeon doesn't feel I am a surgical candidate at this time. She said to send scans and we will keep trying.
Thank you for continuing to keep us posted Sleen!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

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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 » Wed Sep 07, 2016 5:20 pm

Wonderfullymade wrote:She said to send scans and we will keep trying.


I'm sorry. This is a recurring theme, unfortunately. Seems like nobody gets in on the first try.
It took me three tries, so hang in there!

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.

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Wed Sep 07, 2016 9:26 pm

Ok my, good to know! I will hang in there and keep sending scans!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

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

Re: TIL Immunotherapy at NCI

Postby DAS43 » Wed Sep 07, 2016 10:41 pm

Wonderfullymade

Sorry to hear you didn't get in. I am still waiting to hear. I spoke with the nurse today and she said it is being reviewed.
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

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Thu Sep 08, 2016 7:32 am

Will be keeping you in my prayers!I Once they got my scans etc it was only 2 days before I knew!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

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

Re: TIL Immunotherapy at NCI

Postby DAS43 » Thu Sep 08, 2016 9:56 am

I just heard from Jessica I will be ginger to NIH on the 15th 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

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

Re: TIL Immunotherapy at NCI

Postby ronswife » Thu Sep 08, 2016 10:59 am

DAS43 wrote:I just heard from Jessica I will be ginger to NIH on the 15th for testing


WONDERFUL! The BEST to you!!!

: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 » Thu Sep 08, 2016 11:10 am

Good luck, 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 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.

Lee
Posts: 6045
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Thu Sep 08, 2016 11:39 am

DAS43 wrote:I just heard from Jessica I will be ginger to NIH on the 15th for testing


Congratulation. So happy for you :D .

Wonderfullymade,

Good luck, I hope with your recent scan, there is a chance and you are given a chance. As Sleen said, don't give up yet.

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!

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Thu Sep 08, 2016 1:15 pm

DAS43 wrote:I just heard from Jessica I will be ginger to NIH on the 15th for testing


Hooray! Glad to hear it! Please keep us posted! I am not giving up! I think my next scan is in November so I will see how things are going then. I have also spoken to the gal at Medical onc to see if there was another trial that I might be eligible for...not yet but they might have one in the works so I will also notify her at my next scan.
I am still praying the Keytruda will kick in once again though...
You are all in my thoughts and prayers!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

AngelaN
Posts: 206
Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: TIL Immunotherapy at NCI

Postby AngelaN » Mon Sep 12, 2016 8:59 pm

My husband is going to NIH tomorrow for evaluation for the TIL trial after having growth on a KRAS trial this summer. He has a few lung mets - all under a cm, so they are thinking he probably does not have big enough mets yet for harvest, but they want to see him. WOOHOO. Meanwhile he has been a beast tonight. I am going to assume he is anxious about the visit tomorrow, and not just being an @ss for no good reason. I'll keep everyone posted.
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn


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