Back from NIH good news kind of about TIL trial

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teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Back from NIH good news kind of about TIL trial

Postby teri3 » Sun Aug 19, 2018 11:04 am

I m back from my return to discuss my starting the TIL trial. I got what I feel is mixed results about starting TIL trial. After reviewing all my scans and labs they have decided that I'm doing so well on FOLFIRI + Avistin that they are delaying my starting the trial because I've made just good progress on chemo. I suppose this is good news but its a bit of a let down after preparing myself to start the end of September :(
But the BEST news is my T cells are growing and some are showing to be reactive to my tumors! I hate having to wait but it does make sense to not stop some thing that's working and when I do start there will be less cancer cells to deal with.
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Back from NIH good news kind of about TIL trial

Postby NHMike » Sun Aug 19, 2018 12:20 pm

teri3 wrote:I m back from my return to discuss my starting the TIL trial. I got what I feel is mixed results about starting TIL trial. After reviewing all my scans and labs they have decided that I'm doing so well on FOLFIRI + Avistin that they are delaying my starting the trial because I've made just good progress on chemo. I suppose this is good news but its a bit of a let down after preparing myself to start the end of September :(
But the BEST news is my T cells are growing and some are showing to be reactive to my tumors! I hate having to wait but it does make sense to not stop some thing that's working and when I do start there will be less cancer cells to deal with.
Teri


That sounds like great news. I can understand why they feel that you should stay on current treatment as it is working.

I would have loved something like this if I qualified as you don't have to go through the surgical stuff that can have permanent effects.

It's great to hear progress on NCI/TIL.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

sdino
Posts: 72
Joined: Tue Mar 28, 2017 5:32 pm

Re: Back from NIH good news kind of about TIL trial

Postby sdino » Sun Aug 19, 2018 1:35 pm

Same here, Til infusion scheduled in April 2018, new TIL trial offered to us then. Stable CT scans in Mar-May-July 2018. On hold, then.... my Wife was offered in June - 4 NIH trials, 2 TILs and 2 Vaccines. We had 2nd infusion of TILs or vaccine's slated for Aug 2018. Then they decided on 2 trials (TILs or CISH Protocol).. then Aug 2018 date cancelled (no progression in late July CT), NIH is still figuring out which Trial to use. So we wait and she is currently on Xeloda+Avastin.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-2.3CM
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/16 to 1/8/17
CT Scans: 5/17 colon & lung met shrinkage,11/17 to 7/19 slight progression
iTCR TIL Trial NCT03412877 4/19 to 5/19 Off trial, - Sept. 2019 doing Original TIL trial NCT01174121
CEA:16-11/16; 0.6-5/17; 5.1-9/18; 5.4-10/18; 26.9-7/19

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Back from NIH good news kind of about TIL trial

Postby teri3 » Sun Aug 19, 2018 2:19 pm

Thanks NHMike. I get it but I just want to get started lol.

Sdino...theyve offered me the same things on my first meeting in April and have brought up the new trial to me too. It's a little nerve racking to me but they are the smart people and I'll do what they decide. It's exciting that they have so much going on right now and I'm glad to be part of it.
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

sdino
Posts: 72
Joined: Tue Mar 28, 2017 5:32 pm

Re: Back from NIH good news kind of about TIL trial

Postby sdino » Sun Aug 19, 2018 3:10 pm

Yes Teri3, I think the longer we can hold out, the better their technology is getting. Proof in April when we went from the original TIL trial to the newer Younger TIL trial and vaccines offered). Of course you/they have to weigh the options as not to put you at risk. Exciting times with Dr Rosenberg's Team !
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-2.3CM
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/16 to 1/8/17
CT Scans: 5/17 colon & lung met shrinkage,11/17 to 7/19 slight progression
iTCR TIL Trial NCT03412877 4/19 to 5/19 Off trial, - Sept. 2019 doing Original TIL trial NCT01174121
CEA:16-11/16; 0.6-5/17; 5.1-9/18; 5.4-10/18; 26.9-7/19


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