Beginning TIL Therapy at NIH Next Week

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Jacques
Posts: 677
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Beginning TIL Therapy at NIH Next Week

Postby Jacques » Sat Dec 17, 2022 5:03 am

On December 7th, prayingforccr wrote:Finished with 5 days of immuno suppressants (cyclophosphamide, fludabarine).

My lymphocyte and monocytes counts are now 0; wbc is 1.2 K/mcL.

Will do a treatment of Keytruda today (December 7th), then rest until the TIL cells are infused in a short procedure on Friday (December 9th )

This will be followed within 24 hours (December 10th) by interleukin 2 which will be given every 8 hours with the maximum doses being 10 with most patents stopping after 5 or so.

Next week will be daily neupogen shots accompanied by transfusions, as needed.

I will be getting 4 more Keytruda infusions administered every three weeks. (i.e., another 3 months to go after December 9th)

Scans will be done six weeks from infusion (~January 20th, 2023), followed by another set of scans six weeks after that (~March 3rd, 2023) to determine efficacy.
....

Hi Chris,

We're rooting for you and thinking about you often. Hang in there, another three months or so to go ...

If I'm not mistaken, it looks to me like your TIL treatment timeline is something like this:
  • December 9th - TIL infusion.
  • December 10th - Interleukin 2 treatment
  • ~ +/-December 9th - First cycle of Keytruda
  • ~January 20, 2023 -Efficacy scans after second cycle of Keytruda
  • ~March 3, 2023 - Efficacy scans after fourth cycle of Keytruda
  • Mid-March - Final assessment of TIL efficacy
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prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Fri Dec 23, 2022 8:46 am

nmorgen wrote:Oh, I am really looking forward to your results. If you don’t mind me asking how hard has this treatment been?


Thank you, all.

I am back home in fla now.

Treatment was difficult.

They took my immune system down to 0 (no wbc/no lymphocytes) and so I was neutropenic for weeks.

I lost 15 lbs and all my hair.

I was in the same room/hospital bed for 25 days being constantly poked/prodded/tested/drained every few hours.

The worst part is when my platelets fell really low, I passed about 100 blood clots which stripped all the skin.tissue in my rectum/anus leaving me with fissures and making every bm an excruciating event.

Other than the bm problem, Ive bounced back pretty well.

Had cbc yesterday which was good, and will be doing keytruda infusions at the nih every three weeks until scans in mid jan, then in march.

Merry Christmas, everyone.
11/19: colonoscopy
12/19: 6 cm stage 3 rectal cancer
1-3/20: 20 sessions of radiation/capecetibine/clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary 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 sbrt and immunotherapy failed
12/22 TIL Therapy
4/23 Lesions 40% smaller linearly/80% smaller by volume
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beach sunrise
Posts: 856
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Fri Dec 23, 2022 11:27 am

Holding on to the positive thoughts over here.
I pray it works.
You have been thru hell for sure.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
3/30/23 14.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test
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nmorgen
Posts: 79
Joined: Sat Nov 05, 2022 10:31 am

Re: Beginning TIL Therapy at NIH Next Week

Postby nmorgen » Fri Dec 23, 2022 6:23 pm

That does sound really rough. I really hope you feel great soon and all of this leads to no cancer. Happy Holidays!
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, Lynch Syndrome
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
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prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Dec 29, 2022 3:59 pm

Returned for my every three week keytruda infusion.

Will return in three weeks for another round of keytruda and my first scans since infusion.

The scans six weeks after those will be used to determine efficacy, or lack thereof.
11/19: colonoscopy
12/19: 6 cm stage 3 rectal cancer
1-3/20: 20 sessions of radiation/capecetibine/clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary 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 sbrt and immunotherapy failed
12/22 TIL Therapy
4/23 Lesions 40% smaller linearly/80% smaller by volume
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prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Jan 19, 2023 7:58 am

Yesterdays bloodwork indicated a cea of 1.4 (down from 14 pretreatment)

Is this significant?

I don’t know. Will ask doctors today.

It isn’t a bad thing.
11/19: colonoscopy
12/19: 6 cm stage 3 rectal cancer
1-3/20: 20 sessions of radiation/capecetibine/clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary 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 sbrt and immunotherapy failed
12/22 TIL Therapy
4/23 Lesions 40% smaller linearly/80% smaller by volume
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utahgal7
Posts: 118
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Thu Jan 19, 2023 9:11 am

Chris,

CEA coming down is a good sign. Are you feeling better, i.e. pain, energy level, appetite?

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
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Luna18
Posts: 23
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: Beginning TIL Therapy at NIH Next Week

Postby Luna18 » Thu Jan 19, 2023 9:27 am

I think it is a very good thing! You made my day with this news.
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colostomy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection, and colostomy reversal
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED
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prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Jan 19, 2023 3:12 pm

So……….nice to share some good news with the board.

My cea is 1.4; down from a pre treatment 14

All the lesions are smaller.

Many have holes and appear to be collapsing.

The doctors all came to my room and were very excited.

It’s early, but these are the best results that could have been prayed for.

One more keytruda infusion in 3 weeks, then definitive scans 3 weeks after that.

Today is a win.
11/19: colonoscopy
12/19: 6 cm stage 3 rectal cancer
1-3/20: 20 sessions of radiation/capecetibine/clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary 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 sbrt and immunotherapy failed
12/22 TIL Therapy
4/23 Lesions 40% smaller linearly/80% smaller by volume
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roadrunner
Posts: 371
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Thu Jan 19, 2023 5:14 pm

Tremendous! Sounds very promising. I hope things continue in this great direction.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)
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Claudine
Posts: 771
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby Claudine » Thu Jan 19, 2023 6:24 pm

What tremendously great news!!! I'm so happy and excited for you :D :D :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22
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Rock_Robster
Posts: 780
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Beginning TIL Therapy at NIH Next Week

Postby Rock_Robster » Thu Jan 19, 2023 11:40 pm

Excellent news - certainly sounds like a significant drop to me (and not just a drop, but a drop to now within “normal” range). Fingers crossed the imaging agrees! You’ve worked damn hard for this.

Rob
41M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA Nov18: 14>2
Jun22: 5
Dec-Apr23: 17>22
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, tiny lung mets
3/22 PVE, lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Stable. Lymph/peri undetectable
4/23 Minor progression. XELIRI+Bev
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Rock_Robster
Posts: 780
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Beginning TIL Therapy at NIH Next Week

Postby Rock_Robster » Thu Jan 19, 2023 11:41 pm

Sorry I commented before you added the scan results - great news!
41M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA Nov18: 14>2
Jun22: 5
Dec-Apr23: 17>22
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, tiny lung mets
3/22 PVE, lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Stable. Lymph/peri undetectable
4/23 Minor progression. XELIRI+Bev
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MadMed
Posts: 207
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Fri Jan 20, 2023 12:34 pm

Finally some good news. This is excellent pccr, now we want more success!
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
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nmorgen
Posts: 79
Joined: Sat Nov 05, 2022 10:31 am

Re: Beginning TIL Therapy at NIH Next Week

Postby nmorgen » Fri Jan 20, 2023 2:03 pm

I am so glad to hear your news!
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, Lynch Syndrome
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
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