Beginning TIL Therapy at NIH Next Week

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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 » Sun Nov 27, 2022 5:51 am

beach sunrise wrote:My onc works with DR.Williams with certain patients.
I sent my scans to him last year. Didn't hear anything back so inquired about why not. Found out he moved his practice and sent scans to old place and he never received them. No idea what happened to the scans.
I might have to try him again also.


From my discussion with Dr Williams, it seems the current direction of the treatments is converting MSS tumors into mismatch repair deficient (MMI) tumors so that they will be more receptive to immunotherapy drugs. There is also a reliance on the abscopal effect after injecting immunotherapy drugs directly into ablated tumors.

Does it work? I don’t know.

But my impression is that he is a Dr who actively tries to heal his patients.

Unlike most who are simply middlepersons for two or three pharmaceutical companies treating patients with regimens proven to not work.
Last edited by prayingforccr on Mon Nov 28, 2022 1:13 am, edited 1 time in total.
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 » Mon Nov 28, 2022 1:12 am

Dear Chris,

In my opinion, your scan is not that bad. It is a hard call on the TILs. A 25% objective response rate though not great, but could we get synergy following up behind it? I think since you are set up for it, then probably try it. I don't think it will put you at a worse risk.

Sincerely,

Jason
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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Claudine
Posts: 771
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby Claudine » Tue Nov 29, 2022 9:54 am

That sounds rather positive? Wishing you much luck with your upcoming treatment!
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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prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Tue Nov 29, 2022 10:13 am

Claudine wrote:That sounds rather positive? Wishing you much luck with your upcoming treatment!


Looks like I’m down to the river card, Claudine.
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 Dec 01, 2022 8:02 pm

Cost of treatment at Williams Cancer Institute

PEF ablation + intra-tumoral immunotherapy:
• Six CT guided Pulsed Electric Field ablations with intra-tumoral full immunotherapy injections to lung lesions to be done approximately once a week, under anesthesia
o Immunotherapy (CD-40, CD-47, CsF1r, OX-40, LAG-3, Opdivo, B7H3, Yervoy, CpG, Parecoxib) injection.
PEF ablation (single charge):
Intra-tumoral immunotherapy (per procedure):
Total:
$ 22,800.00 $ 34,550.00

$ 230,100.00 Total

Quarter of a million dollars with no data to back up if it works or not :(
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
Top
prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Dec 07, 2022 4:26 am

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, then rest until the til cells are infused in a short procedure on friday.

This will be followed within 24 hours 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.

Scans will be done six weeks from infusion, followed by another set of scans six weeks after that to determine efficacy.

I am scouring germany to find a center that might offer the cryoablation/immunotherapy injection combination (for less than 250k) should the tils not work (15% ORR)

I am shaving my head today, as the cyclophosphamide guarantees delayed baldness after a couple of weeks :(

I think I’m probably pretty close to the end of the road, yet I’m still hopeful for today.
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
Top
prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Fri Dec 09, 2022 4:45 pm

TILs were infused today at 3:00

Go get em, boys!!!
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
Top
Markdale
Posts: 66
Joined: Wed Dec 02, 2020 4:45 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Markdale » Fri Dec 09, 2022 8:52 pm

Hoping you have a good response.
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: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule Biopsy unsuccessful
1/1/21 thoracotomy 1 met removed that wasn’t noticed on ct
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
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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 09, 2022 9:25 pm

Markdale wrote:Hoping you have a good response.


Thank you, “markdale”.

Scans in 6 weeks and then 6 weeks after that.

The second set of scans will determine efficacy.

Currently doing interleukin 2 infusions every eight hours until blood work indicates it is no longer safe to do so (most likely kidney #s)
Last edited by prayingforccr on Sat Dec 10, 2022 4:51 am, edited 2 times in total.
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
Top
MadMed
Posts: 207
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Fri Dec 09, 2022 9:41 pm

Fight on! Hope those supercharged immune cells do the job!
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 Dec 09, 2022 10:05 pm

Oh, I am really looking forward to your results. If you don’t mind me asking how hard has this treatment been?
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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roadrunner
Posts: 371
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Fri Dec 09, 2022 11:01 pm

I am pulling for you, friend.
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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Peregrine
Posts: 139
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Sat Dec 10, 2022 12:52 am

Good luck with your TIL's. I'm glad you were able to qualify for this procedure.

Take care ...
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Thedruid
Posts: 18
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Sat Dec 10, 2022 9:01 pm

I am praying for you here, PrayingforCCR. I hope this treatment will do the trick for you!
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23
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Markdale
Posts: 66
Joined: Wed Dec 02, 2020 4:45 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Markdale » Fri Dec 16, 2022 6:06 pm

How are you handling the treatment prayingforccr?
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: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule Biopsy unsuccessful
1/1/21 thoracotomy 1 met removed that wasn’t noticed on ct
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
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