Jacques wrote:Good luck on your scans this week. When you get a chance, please let us know what you find out.
Thank you, Jacques.
At hotel now.
Bloods/scans tomorrow am. Results/meeting with docs in the afternoon.
Stable would be a win.
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
Thank you, Jacques.
At hotel now.
Bloods/scans tomorrow am. Results/meeting with docs in the afternoon.
Stable would be 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
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
Just received text from Dr Dinerman saying I could come anytime early for meeting. Does this mean good news, I asked? Yep. Everything continued shrinking he replied.
In cab on way back to nih for details.
In cab on way back to nih for details.
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
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
Sending out some more great news to everybody…….lesions continue to shrink……many are on the verge of complete disappearance/being declared scar tissue……the trend is strong and the expectation is further shrinkage until my next scans in 3/4 months……the hope is for a complete cure at this point…..Dr Dinerman said they are really happy they decided to treat me and that I’m a responder, and now a historic patient………I KNOW my prayer team is a huge reason for my miraculous response…..though not out of the woods yet, the results continue to be better than could be hoped for…..thank you always for your prayers, well wishes, positive vibes
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
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
Re: Beginning TIL Therapy at NIH Next Week
Congratulations!! Prayed for you last night 
Very happy!
Very happy!Re: Beginning TIL Therapy at NIH Next Week
Fantastic news 
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
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
Re: Beginning TIL Therapy at NIH Next Week
Well done, very impressive results. You didn’t give up and found a treatment that gave results. I’m all for following the standard of care at the start but for stage 4 after that we need something more. Good work
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
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
Re: Beginning TIL Therapy at NIH Next Week
This is so awesome pccr, I am truly happy 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
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
Re: Beginning TIL Therapy at NIH Next Week
Congratulations! I am so happy for you!
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
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
Re: Beginning TIL Therapy at NIH Next Week
This is such wonderful news! Thank you for sharing your experience with us. This gives so many tremendous hope & encouragement.
Wife of Dx 8/2022 (42 yr old)
Stage IV- Sigmoid Colon, Liver/LN Mets
MSS/KRAS G12A
Baseline CEA-65; Began FOLFOX w/Avastin 9/22
4/23- Liver & Colon Resection (T4bN0M1a)- 0/23 LN
5/23- Began Xeloda; CEA 5
Stage IV- Sigmoid Colon, Liver/LN Mets
MSS/KRAS G12A
Baseline CEA-65; Began FOLFOX w/Avastin 9/22
4/23- Liver & Colon Resection (T4bN0M1a)- 0/23 LN
5/23- Began Xeloda; CEA 5
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prayingforccr
- Posts: 518
- Joined: Sun Jun 28, 2020 4:44 pm
Re: Beginning TIL Therapy at NIH Next Week
rnb828 wrote:This is such wonderful news! Thank you for sharing your experience with us. This gives so many tremendous hope & encouragement.
I am not out of the woods.
I am GRATEFUL
I am happy to answer any and all questions
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
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
To my knowledge til therapy is currently only administered in the us at nih (under Dr Rosenberg) and the university of Pittsburgh.
My understanding is that it has much better outcomes for melanoma and blood diseases and a very low response rate for epithelial (solid) tumors.
Why my treatment/response has been so dramatic is a mystery. Dr Dinerman believes it is to do with my specific neo antigens on the tumor cells themselves which are highly identifiable by the tils.
I’m nowhere near out of the woods, but am hopeful the tils will continue to do their thing until NED (dare to dream)
I’m due back for scans at the end of august and will update then, but continue to check this site to see if I might help in anyway.
My understanding is that it has much better outcomes for melanoma and blood diseases and a very low response rate for epithelial (solid) tumors.
Why my treatment/response has been so dramatic is a mystery. Dr Dinerman believes it is to do with my specific neo antigens on the tumor cells themselves which are highly identifiable by the tils.
I’m nowhere near out of the woods, but am hopeful the tils will continue to do their thing until NED (dare to dream)
I’m due back for scans at the end of august and will update then, but continue to check this site to see if I might help in anyway.
Last edited by prayingforccr on Sun Jun 04, 2023 9:27 pm, 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
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
Even though it was a hard therapy. You did it and I believe it will continue to work.
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
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
-
Mtnrspctwfe
- Posts: 8
- Joined: Wed Mar 02, 2022 7:14 am
- Facebook Username: mtnrspct
Re: Beginning TIL Therapy at NIH Next Week
So glad you’re getting great results!!! Happy for you!
-
prayingforccr
- Posts: 518
- Joined: Sun Jun 28, 2020 4:44 pm
Re: Beginning TIL Therapy at NIH Next Week
beach sunrise wrote:Even though it was a hard therapy. You did it and I believe it will continue to work.
Whole board is pulling for you in Germany
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
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
-
prayingforccr
- Posts: 518
- Joined: Sun Jun 28, 2020 4:44 pm
Re: Beginning TIL Therapy at NIH Next Week
Mtnrspctwfe wrote:So glad you’re getting great results!!! Happy for you!
Thank you.
Will they continue?
Jury is out everyday.
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
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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