Beginning TIL Therapy at NIH Next Week

Please feel free to read, share your thoughts, your stories and connect with others!
prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sat Jul 30, 2022 12:42 pm

I will undergo a VATS procedure to harvest a tumor(s) from my lungs Tuesday, and leukapherisis Thursday to remove as many of my white blood cells as they can.

They will attempt to extract lymphocytes currently within and fighting the harvested tumor and grow them in the billions in the laboratory for four to five weeks, after which time I will undergo Keytruda to stimulate the immune system pre infusion, then followed by interleuken 2 post infusion.

The time in the hospital for the keytruda/TIL infusion/interleukin 2 is anticipated to begin in mid to late September, to be four to five weeks in duration and is not without risk (primarily from the interleukin 2).

I will continue to update as things, hopefully, progress.
Last edited by prayingforccr on Sat Aug 13, 2022 3:23 pm, edited 1 time in total.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

MadMed
Posts: 174
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Sat Jul 30, 2022 7:10 pm

Outstanding pccr, good luck, this is a good plan. I hope for you and all of us this works. Please let us know how it goes, we’re all rooting for you.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Tue Aug 02, 2022 5:51 pm

VATS wedge tumor harvest completed today.

Leukapheresis scheduled for Thursday.

Then home for six to eight weeks while the TIL are grown in the lab (hopefully).

Then back here for four to five weeks for infusion etc etc.
Last edited by prayingforccr on Fri Aug 05, 2022 5:55 pm, edited 2 times in total.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Tue Aug 02, 2022 6:11 pm

MadMed wrote:Outstanding pccr, good luck, this is a good plan. I hope for you and all of us this works. Please let us know how it goes, we’re all rooting for you.


Thank you, MadMed.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

Markdale
Posts: 41
Joined: Wed Dec 02, 2020 4:45 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Markdale » Tue Aug 02, 2022 6:29 pm

Hope you’re recovering well from the surgery. Treatment sounds very interesting, really hope it works
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Fri Aug 05, 2022 5:58 pm

prayingforccr wrote:VATS wedge tumor harvest completed today.

Leukapheresis scheduled for Thursday.

Then home for six to eight weeks while the TIL are grown in the lab (hopefully).

Then back here for four to five weeks for infusion etc etc.


Looks like the TILs will take 2-4 months to grow in the lab.

I need to do treatment up until one month before the infusion at nih, and am looking to do the sbrt/opdivo/yervoy until such time looking to get that abscopal effect going before the TILs are introduced.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

DarknessEmbraced
Posts: 3713
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Beginning TIL Therapy at NIH Next Week

Postby DarknessEmbraced » Sat Aug 06, 2022 7:59 am

I hope all goes well for you. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

MadMed
Posts: 174
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Sat Aug 06, 2022 4:56 pm

Good to see things progressing pccr. This is a good plan.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sat Aug 06, 2022 6:23 pm

MadMed wrote:Good to see things progressing pccr. This is a good plan.


Thank you, MadMed.

I recognize how extraordinarily “lucky” I am to have all the stars align and afford me these treatments.

I think it’s the Holy Grail.

If I had listened to mskcc/mda/local oncologist, I would be almost a year into FOLFIRI/Avastin with no hope of cure or remission.

I refused the treatment and would do so again today and tomorrow.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

Thedruid
Posts: 7
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Mon Aug 08, 2022 8:35 pm

I am really interested on knowing more about this treatment, PrayingforCCR. As it uses keytruda during the treatment, should I understand this treatment is valid only for MSI people ?

Thanks,

theDruid
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B colon cancer, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX started in 08/29/18 - finished 2/5/2019
Stage 4
Liver met found in 01/2020. RadioAblation in 02/2020

User avatar
beach sunrise
Posts: 694
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Mon Aug 08, 2022 9:08 pm

Been thinking about you pccr!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Aug 10, 2022 8:36 pm

Thedruid wrote:I am really interested on knowing more about this treatment, PrayingforCCR. As it uses keytruda during the treatment, should I understand this treatment is valid only for MSI people ?

Thanks,

theDruid


Keytruda is ancillary to the treatment, really.

The crux is that lymphocytes that are currently within and fighting my mets/lesions will be extracted and grown in the lab by the billions with the intention of infusing them back into my body via the bloodstream in the hope/expectation that they will seek out any cancerous cells in my body and kill them.

It’s personalized immunotherapy, basically.

Dr Rosenberg wrote a paper in the nejm on this in 1988, he is the father of immunotherapy, and is the head of nih where I am being treated.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Aug 10, 2022 8:37 pm

beach sunrise wrote:Been thinking about you pccr!


Thank you, beachsunrise.

I am going to push hard the next four months, and am expecting the best outcome.

I’m going to be doing the sbrt/opdivo+yervoy treatment prior to the TIL.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

User avatar
ginabeewell
Posts: 558
Joined: Wed Oct 24, 2018 10:30 am

Re: Beginning TIL Therapy at NIH Next Week

Postby ginabeewell » Fri Aug 12, 2022 5:19 pm

I hadn’t realized immunotherapy was available for patients who weren’t MSI, unless they had a high tumor mutation rate.

Really interested to follow this and hoping for all the best for you!!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sat Aug 13, 2022 10:51 am

ginabeewell wrote:I hadn’t realized immunotherapy was available for patients who weren’t MSI, unless they had a high tumor mutation rate.

Really interested to follow this and hoping for all the best for you!!


Mass Gen is doing a clinical trial using sbrt/opdivo/yervoy for mss

https://clinicaltrials.gov/ct2/show/NCT ... w=2&rank=1

Will it work? Who knows?

I think between the two treatments (first one at nyu/weill beginning in two weeks, and the other at nih later in the fall) that I have a real shot at remission.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy


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



Who is online

Users browsing this forum: No registered users and 6 guests