TIL Immunotherapy at NCI

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Sleen
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Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Sat Feb 03, 2018 12:59 pm

I asked the attending, but he only said that it's "really hard to pin down."
I knew that already :)

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.

sharijohn
Posts: 12
Joined: Wed Feb 07, 2018 2:51 am

Re: TIL Immunotherapy at NCI

Postby sharijohn » Thu Feb 08, 2018 5:23 am

Hi Celine, hope all is well. I am eagerly looking for a promising treatment for my mom. I’m a student and try actively looking for solution day and night researching. I actually cane across your story regarding your treatment at NIH. How was your experience? What was the response rate? Was it remission response for all patients that showed a response? Any inside on the gene mutations that could potentially benefit from this treatment? My mom is non msi-high stage iv with kras g12v mutation. Any suggestions would be helpful. It’s very hard juggling school while actively researching and taking control of this for my mom. I would also being willing to meet with you and or speak with you regarding your experience. Thank you again. :)

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

Re: TIL Immunotherapy at NCI

Postby NHMike » Thu Feb 08, 2018 11:53 am

Sleen wrote:I'm back to report on Follow-up #13. Lucky 13 :)

My scans show no signs of cancer! Bloodwork is good. Still NED.

They asked me to consent to a new study where they will do research on my T-cells. They'd like to figure out how to "turn back the clock" and revert them to a previous state, when they were stem cells. They want to know how/why my cells are behaving differently than some other patients' cells. I signed the papers--Patrick (DH2Sleen) signed as witness. I was assured that no apheresis would be necessary!

I got to meet another mCRC patient who will be starting the trial this week! Not sure if this person posts here or not.

The attending told us that they're working on changing the trial to use "young TIL" from the patients. They hope the young TIL will be more reactive. My understanding is that they'd use the patient's own T-cell receptors for this. I don't know the timeline for when this change is going to happen.

I'm due back in six months for follow-up 14.

Pro Tip: If you haven't yet tried Crystal Light powder in your iohexol, I highly recommend it. A very kind fellow-patient saved me from tossing my cookies in the CT waiting area on Monday by adding some flavor to my final cup of "juice". I know that some institutions use flavored slurries for their contrast, but NIH uses a clear, nasty-tasting (to me) watery contrast instead. It gets more and more difficult for me to swallow each time. I'll be packing Crystal Light from now on!

Celine


Thanks for the update. I went through the normal treatment but it's nice to know that this is a possibility if I get a recurrence.

I'd really like to know if I have one of the Alleles that this stuff works with.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

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Sleen
Posts: 310
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Feb 08, 2018 12:54 pm

sharijohn wrote:... I am eagerly looking for a promising treatment for my mom. ...How was your experience? What was the response rate? Was it remission response for all patients that showed a response? Any inside on the gene mutations that could potentially benefit from this treatment? My mom is non msi-high stage iv with kras g12v mutation. Any suggestions would be helpful...


Hello!
Very briefly: My experience is all on my blog (see link in sig.) there were many ups and downs.
Response Rate: They have not published the results yet, since it is an ongoing trial. I have heard of four patients who are experiencing a durable response. There may be more that I don't know of, however.
Gene Mutations: They expect to find a variety of mutations that will work. They're still learning. They attempt to create a treatment with whatever mutations and HLA the patient brings them.
Dr. Yang (who works with Dr. Rosenberg at NIH) has a trial specifically for G12V mutations, if the patient has a particular HLA. That trial info is here.
The trial that I did is listed in my sig.

If you'd like to learn about other trials, check out the Clinical Trial Finder.
Another great resource is colontown.

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.

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Sleen
Posts: 310
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Feb 08, 2018 12:57 pm

NHMike wrote:...it's nice to know that this is a possibility if I get a recurrence.


I agree! There is a lot more hope today than ever before! I think you're smart to keep reading and learning in case you might need the info some day. I'm hoping you won't need it though :)

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.

NHMike
Posts: 1359
Joined: Fri Jul 21, 2017 3:43 am

Re: TIL Immunotherapy at NCI

Postby NHMike » Thu Feb 08, 2018 1:02 pm

Sleen wrote:
NHMike wrote:...it's nice to know that this is a possibility if I get a recurrence.


I agree! There is a lot more hope today than ever before! I think you're smart to keep reading and learning in case you might need the info some day. I'm hoping you won't need it though :)

Celine


The Adjuvant chemo has been brutal too. I suspect that the TIL would have been easier than Neo-Adjuvant Chemo + Radiaion + Surgery + Adjuvant Chemo and I would have been left without loss of functionality. In ten years, I suspect that this will be the routine care if you have the right mutation + alleles and it will be far easier on patients.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

sharijohn
Posts: 12
Joined: Wed Feb 07, 2018 2:51 am

Re: TIL Immunotherapy at NCI

Postby sharijohn » Tue Mar 06, 2018 12:54 pm

Hi sleen my mom is going for a consult for til trial. How long do you have to be in the hospital? Can she be at a hotel or does she have to be there for 4-weeks?

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Sleen
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Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Mar 06, 2018 5:23 pm

For consult patients are not normally inpatient.
Harvest surgery and apheresis will require a 2-to-4 day hospital stay.
If all goes well, the treatment visit will require 3 to 4 weeks inpatient. Sometimes patients stay elsewhere at the beginning of this stretch, but once nutropenia sets in, they're safest in the hospital.

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.

sharijohn
Posts: 12
Joined: Wed Feb 07, 2018 2:51 am

Re: TIL Immunotherapy at NCI

Postby sharijohn » Mon Mar 12, 2018 12:44 am

jdepp wrote:I'm on my way back from Bethesda after an NIH TIL trial follow up. The first scan wasn't very good, so I expected to be dropped from the trial today, but the second scan was mixed: some lesions slightly larger, some slightly smaller, so I may be getting some benefit after all. I'm scheduled to rinse & repeat the scan in a month. Wishing DAS43 & all others the very best. /jdepp


What mutation, stage, and micro satiliete status do you have?

sharijohn
Posts: 12
Joined: Wed Feb 07, 2018 2:51 am

Re: TIL Immunotherapy at NCI

Postby sharijohn » Mon Mar 12, 2018 1:16 am

sdino wrote:My Wife had lung wedge resection surgery this week 1/8/18 at NCI/NIH to harvest her TILs. Everything went well and today we will go home after she completes Aspheresis. Now we wait and see for 3 months if the harvested cells grow with the proper mutations. Incredible stuff going on down here in Bethesda, MD.


Hello my mom is doing the this trial and we are waiting. How was your result? Was the response immediate? Are you in remission??

sdino
Posts: 56
Joined: Tue Mar 28, 2017 5:32 pm

Re: TIL Immunotherapy at NCI

Postby sdino » Mon Mar 12, 2018 7:05 am

Hi Sharijohn - We are still awaiting word from NCI/NIH if her TIL cells are reactive in the lab. Should know something within the next 2 weeks or so...

Steps and timelines after TIL harvest Surgery:
1. After TIL Harvest Surgery = 2 to 3 weeks if cells are growing by the billions.
2. After TIL Harvest Surgery = 2 to 3 months in lab to see if TILs are reactive. - This is where we are at.
3. TIL infusion @ NCI = 4 to 6 week stay in hospital.
Caregiver for Wife 52 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-1.5cm
MSS, KRAS-mut G12D; TP53
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17, 8/17 Start Xeloda + Avastin
CT Scans: 5/17 colon & lung met shrinkage,11/17 and 1/18 slight progression lungs/colon; 5/18 stable lungs/colon
NCI YOUNGER TIL Trial NCT03412877 - 1/18 VATs lung surgery 2 mets wedge resect
CEA: 16 - 11/16; 0.6 - 5/17; 3.0 - 11/17; 4.4 - 1/18; 5.7 - 2/18; 4.9 - 3/18, 4.0 - 5/18

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DH2Sleen
Posts: 74
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Mon Mar 12, 2018 8:40 am

sdino wrote:Steps and timelines after TIL harvest Surgery:
1. After TIL Harvest Surgery = 2 to 3 weeks if cells are growing by the billions.
2. After TIL Harvest Surgery = 2 to 3 months in lab to see if TILs are reactive. - This is where we are at.
3. TIL infusion @ NCI = 4 to 6 week stay in hospital.

I just wanted to add that the process doesn't end with release from the NIH hospital. After release, the patient is seen for follow-up every 4 to 6 weeks. The first follow-up doesn't typically show remission, but, if it is working, it may show some haziness around the tumors on the CT scans. The second or third follow-up may show some shrinkage, but they will not consider the patient to have responded until they have 2 consecutive scans that show at least 30% reduction in targeted-tumor major-axis total length. So, my point is that this process takes a lot of time. But, if it works, it is well worth it.
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

DAS43
Posts: 46
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Fri Mar 16, 2018 1:39 pm

Just returned home from my 3 Month check-up at NIH. good news nothing has changed. The tumors they are monitoring in my left lung has remain the same size although they still think it is fading. I will go again in 3 months which will be June for another CT scan and MRI brain scan. I asked while I was there what the current success rate is and I was told it's around 25% . That number is for all cancers except the melanoma the melanoma is much higher. I was also asked to participate in another study. They will be using samples from the tumor they took that they have left over to make stem cells with the hope of being able to program those stem cells into tumor infiltrating lymphocytes. Very exciting things happening at 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: 310
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Fri Mar 16, 2018 4:04 pm

wooHOO! So glad to see this update :) :) :)
I signed the same consent. Exciting stuff!

Congratulations!!!

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.

mariane
Posts: 618
Joined: Sun Sep 13, 2015 6:16 pm

Re: TIL Immunotherapy at NCI

Postby mariane » Fri Mar 16, 2018 4:51 pm

Congratulations!!!#
This 25% is very very exciting number!
Such a good, good news!
Thank you! And best wishes!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!


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