TIL Immunotherapy at NCI

Please feel free to read, share your thoughts, your stories and connect with others!
gator.girl
Posts: 37
Joined: Thu Sep 05, 2013 1:05 pm

Re: TIL Immunotherapy at NCI

Postby gator.girl » Mon Mar 30, 2015 5:16 pm

Lol Kenny I wish I had an exotic reason why I chose that name! I think the one I had wanted was already taken and I had to think fast! I live in Florida and all my "real" treatment gets done at UF (that's were my GI oncologist is and where I had Y90 and surgery) - that is gator land - where the UF gators play.... I also sent my kids at Camp Kesem that was organized by UF students and I volunteered as their mental health professional so I felt some sort of tie with. UF!

I guess I should have used my blog name paddleboardgirl as I love stand up paddleboard! Oh well - never thought anyone would ask me!!!

Rachel :)
Dx 8/13 @ 40
Stage IV - innumerable mets to liver
12 rounds of Folfox + Avastin
8 months on maintenance
11/14 Y90 to right side of liver
01/15 Gallbladder removal and colon resection
02/15 Mets to lungs
Now on Folfiri

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: TIL Immunotherapy at NCI

Postby KWT » Mon Mar 30, 2015 6:14 pm

Ok, well I was wondering if you came from a long line of alligator wrestlers or something. :shock:

User avatar
Sleen
Posts: 311
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Mar 31, 2015 7:10 am

kennytwisted wrote:Should hear within two days if they take rats instead of mice.


LOL...I'm guessing that they do! Got my fingers crossed 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 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.

User avatar
lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: TIL Immunotherapy at NCI

Postby lilacbreastedroller » Tue Mar 31, 2015 8:06 am

So.... how was it? How are you? Aren't the tempurpedics great? And the chow there?? (Sleen)

:?:
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

User avatar
Sleen
Posts: 311
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Mar 31, 2015 8:54 am

ooh, yes. These mattresses are wonderful.
Food's good too--no complaints! My i.v. was placed on the first try, and the nurses have all been friendly and helpful.
Saw the attending briefly yesterday, but was out having a procedure when they came by this morning. He had a FLOCK of doctors with him--newbies, I assume. "My" resident was in the pack, too.

Hubby is staying at the lodge, which is a huge blessing.

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.

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: TIL Immunotherapy at NCI

Postby KWT » Fri Apr 03, 2015 5:46 pm

I recieved my vile to send off my blood today. :|

User avatar
Sleen
Posts: 311
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Sun Apr 05, 2015 1:57 pm

That's great news, Kenny!
Get those biologicals in the mail :D

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.

User avatar
DH2Sleen
Posts: 75
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Thu Apr 09, 2015 6:11 pm

I guess it is time to stop lurking here and post something so you can see the nice avatar Sleen made for me. The art work belongs to our daughter #2. This is my role in this deal, carrying the luggage for our little white mouse.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
09/2013 colectomy
10/2013 - 3/2014 FOLFOX
04/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
03/2015 enter TIL trial @ NIH
07/01/15 Receive 148E9 cells to target K-ras G12D mutation
08/11/15 Reduction=18%, no new tumors
09/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
01/26/16 46% but one suspicious met
03/24/16 46% but one growing
04/07/16 Lung lobectomy NED for the first time

mackswife
Posts: 263
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: TIL Immunotherapy at NCI

Postby mackswife » Tue Apr 14, 2015 10:51 am

My DH has officially thrown his hat in the TIL trial ring. We initiated contact with NIH a couple of weeks ago, and have submitted the initial paperwork and required blood sample for testing. We are currently checking off our #1 Bucket list dream...another trip to Italy to visit our son, daughter-in-law and granddaughter. We're loving every minute of our time here, but realize the clock is ticking. DH is on a chemo break...xeloda/celebrex has failed; folfirir/erbitux has failed. If DH finds out he's a candidate for this trial, he will choose to go forward rather than return to FOLFOX, which he sees as a short bridge to Hospice Care. I'll try to post updates on this thread as they might be helpful for others who are interested in pursuing this particular path.

Pattie
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list

User avatar
DH2Sleen
Posts: 75
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Tue Apr 14, 2015 11:10 am

I hope he gets in Pattie. We are progressing through the process. The people at NIH are great and we could not be happier with how they treated us. We just need those cells to grow and do their job.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
09/2013 colectomy
10/2013 - 3/2014 FOLFOX
04/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
03/2015 enter TIL trial @ NIH
07/01/15 Receive 148E9 cells to target K-ras G12D mutation
08/11/15 Reduction=18%, no new tumors
09/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
01/26/16 46% but one suspicious met
03/24/16 46% but one growing
04/07/16 Lung lobectomy NED for the first time

User avatar
lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: TIL Immunotherapy at NCI

Postby lilacbreastedroller » Tue Apr 14, 2015 4:47 pm

Pattie - Good luck to your husband. I'm crossing my fingers that he gets in!

Has he tried Stivarga? Nasty drug but did me some good. Of course, if he gets into the trial, no chemo.

atb
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: TIL Immunotherapy at NCI

Postby Ceebo » Tue Apr 14, 2015 7:44 pm

We just sent in the paperwork to get started in the process for this trial, also. Will keep you posted on how it goes.
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

mackswife
Posts: 263
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: TIL Immunotherapy at NCI

Postby mackswife » Thu Apr 16, 2015 3:46 pm

To DH2Sleen and Karin - Thanks for your well-wishes. We are currently in Italy visiting family and hope to have a message from NIH waiting when we return next week. To answer your question Karin - no, DH has not had stirvarga. Xeloda and Erb and Folfiri and Erb have both failed to stop progression. Onc. recommended going back on FOLFOX but told us to go to Italy first as he anticipated DH would be too sick to travel on FOLFOX. When our onc. found out we were interested in the trial, he encouraged us to proceed. But, he said he wouldn't recommend going back on chemo because DH needed to be as strong as possible to get through the trial. (Hope this makes sense....). Anyway, DH is feeling good right now, but we know his cancer is progressing rapidly. With the time lag you are telling us about in the trial, I feel certain he'll need to be on chemo to hold the line. I guess NIH will answer those questions if DH is a candidate. So far, we've only sent the blood sample back...haven't heard anything since then. Oh....one more thing for Karin - DH refused Stirvarga based on the fact that we haven't heard anything good about it. Man, this journey is tough!

Thanks so much for all the info you're sharing...it helps more than you know! Blessings to all....Pattie
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list

User avatar
DH2Sleen
Posts: 75
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Thu Apr 16, 2015 6:45 pm

I'm so excited to see so many people looking into this trial. Good luck to you all. Even though no colon cancer patients have been cured yet, I firmly believe we will start see complete remissions with this group of "mice". Sleen's progress through this trial has be perfect so far. Prayers for all of you.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
09/2013 colectomy
10/2013 - 3/2014 FOLFOX
04/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
03/2015 enter TIL trial @ NIH
07/01/15 Receive 148E9 cells to target K-ras G12D mutation
08/11/15 Reduction=18%, no new tumors
09/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
01/26/16 46% but one suspicious met
03/24/16 46% but one growing
04/07/16 Lung lobectomy NED for the first time

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: TIL Immunotherapy at NCI

Postby KWT » Tue Apr 21, 2015 12:25 pm

They want me to come in for scans and resection on the seventh :shock: this happens pretty quick. Decision time.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 56 guests