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 » Tue Sep 13, 2016 6:30 am

AneglaN

Hope everything goes well!
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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DH2Sleen
Posts: 81
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Tue Sep 13, 2016 6:51 am

AngelaN wrote: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.


NIH has become our second home. The people there are just great. He has nothing to worry about as far as how he will be treated... they will take all the time and answer any questions you may have. You couldn't be in a better place. GOOD LUCK... they wiped out Sleen's KRas tumors.
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"

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

Re: TIL Immunotherapy at NCI

Postby AngelaN » Tue Sep 13, 2016 5:40 pm

Well what a place. Sleen is somewhat of a celebrity there...they asked me what I knew about the trial, and then when I told them I know of one CRC patient who is NED but had recurrence due to mutation of KRAS they were stunned (I reminded them that the cancer community is very small...so as soon as we walk out of there I'll be blabbing about the visit). :P I asked a lot of questions, asked about the lab issue last summer, asked about the MD Anderson option. The science sounds good and we were very impressed with the whole process and more importantly the physicians.
They feel he is a great candidate. They are fairly certain his tumor is large enough. He is physically in excellent shape. No real areas of concern. They told us to keep looking for other trials too. And they asked me to pass along not to make this option the "last resort". They want more patients that have other options. We are excited. I hope we are not jumping the gun. He will get Kaytruda during the treatment (new addition since the summer) so it will preclude him from further immunotherapy trials.
Let me know if anyone needs any info.
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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Sleen
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Sep 13, 2016 7:32 pm

wooHOO! That is awesome. I am SO GLAD that they told you to let people know to not make this option a last resort. I could not agree more.

Are they making plans for the next steps? or are you two still discerning whether you want to give it a try?

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.

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

Re: TIL Immunotherapy at NCI

Postby DAS43 » Fri Sep 16, 2016 6:00 pm

Had my apt at NIH yesterday and heard from the Dr today. I am excepted into the study. Very excited and hopefull. I should hear back next week on a schedule to remove tumor. My doc also said that they see small tumors that were not in my lungs in August. He suggest after the tumor is harvest starting chemo for the months it takes to grow cells.

I was very impressed with the doctors and all of NIH.
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 » Fri Sep 16, 2016 6:04 pm

wooHOO!
That's fantastic. Congratulations!

Best of luck to 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.

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: TIL Immunotherapy at NCI

Postby JDMNYC » Thu Sep 22, 2016 8:54 pm

Wonderfullymade wrote: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!


Hi Wonderfullymade -

Did they say why they thought you weren't a surgical candidate at this stage?

Considering this trial myself.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

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

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Fri Sep 23, 2016 8:47 am

Jdmnyc
she said at this time, they would like the area to get a biopsy to be easy so recovery is quick, apparently mine are not. She did say every time I am scanned to send them and we can keep trying.
I would contact them for consideration, worse case nothing yet...but if you dont you wont know
best of luck to you!
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

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: TIL Immunotherapy at NCI

Postby JDMNYC » Fri Sep 23, 2016 2:12 pm

Wonderfullymade wrote:Jdmnyc
she said at this time, they would like the area to get a biopsy to be easy so recovery is quick, apparently mine are not. She did say every time I am scanned to send them and we can keep trying.
I would contact them for consideration, worse case nothing yet...but if you dont you wont know
best of luck to you!


I think I'm going to do that - thanks very much!
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

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

Re: TIL Immunotherapy at NCI

Postby DAS43 » Fri Sep 23, 2016 4:17 pm

I have Apts at NIH OCT 4th, 5th and 6th for pulmonary test, meet the thoracic surgeon and harvesting white blood cells. Excited and scared all at the same time.
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

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

Re: TIL Immunotherapy at NCI

Postby Sleen » Fri Sep 23, 2016 5:09 pm

DAS43 wrote:I have Apts at NIH OCT 4th, 5th and 6th for pulmonary test, meet the thoracic surgeon and harvesting white blood cells. Excited and scared all at the same time.


Excellent! I know just how you feel :) Let me know if you have questions. Do you know which surgeon you'll be meeting?

Very happy for 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.

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

Re: TIL Immunotherapy at NCI

Postby AngelaN » Sun Sep 25, 2016 7:30 am

DAS43 - My husband andI will be there at the same time. Maybe we can catch up!
Angie
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

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

Re: TIL Immunotherapy at NCI

Postby DAS43 » Sun Sep 25, 2016 9:26 am

AngelaN wrote:DAS43 - My husband andI will be there at the same time. Maybe we can catch up!
Angie


That would be great!
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

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

Re: TIL Immunotherapy at NCI

Postby Sleen » Sun Sep 25, 2016 11:18 am

You MUST tell us if you're both in apheresis at the same time :)

That would be pretty wild. Of course, we'd need photographic evidence ;)

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.

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

Re: TIL Immunotherapy at NCI

Postby DAS43 » Tue Oct 04, 2016 10:14 am

Had apt at NIH today for pulmonary test. Lol took an hour and 15min to go 25 miles! Fora 10min test. Glad I moved away from this area 10 years ago. NIH itself is great. Tmrw will meet with surgeon at 9am. Traffic will beat nightmare once again 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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