Beginning TIL Therapy at NIH Next Week

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claudine
Posts: 813
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby claudine » Sat Mar 04, 2023 11:15 am

Where’s the dancing emoji?? So happy for you PFCCR!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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; Xeloda/Avastin since 01/24

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Thedruid
Posts: 24
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Thu Mar 09, 2023 8:29 pm

Hello, PCCR

I am very very happy for the outcome of your treatment. I hope those TILs continue the fight for a loooooong time and that you start getting some NEDs in the near future ! Your news made my day !

TheDruid
_____________________________________
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

Irishmum
Posts: 7
Joined: Sat Feb 19, 2022 6:38 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Irishmum » Sat Mar 11, 2023 4:05 pm

WOW!! Congratulations @prayingforccr!
You have given me and I'm sure many others a reason for hope and optimism. Thank you for your willingness to share your story. I am enrolled in a clinical trial in Pittsburg. I am due to receive my TIL infusion in May. (fingers and toes are crossed) How intense was the time during the admitted hospital stay? Any tips you can share?
Female 52
4/21 Dx w/ Stage 3 RC
Tumor Location: lower rectum
Tumor type: Adenocarcinoma with Neuroendocrine features
MSS stable
Tumor size (2.5cm)
4/21: 8 rounds FOLFIRINOX followed by
6 weeks of chemoradiation w/capecitabine
Near CR of primary
12/21 Scan shows 3 Liver Mets
1/22 3 more rounds FOLFIRINOX
2/22: Growth in liver mets
3/22: Liver resection #1
5/22 SBRT with TAS 102 for solitary new liver met
8/22 NED
11/22 Still NED
CCR of primary
1/23 3 new liver Mets
5/23 TIL Therapy

Irishmum
Posts: 7
Joined: Sat Feb 19, 2022 6:38 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Irishmum » Sun Mar 12, 2023 9:30 am

@prayingforccr-
Thank you! You are right-I have so many questions! I can't direct message you as it says I have not posted enough. I wonder if you can direct message me and I would then be able to respond? The trial I am enrolled in is at Allegheny which is also in Pittsburgh. I will have the IL-2 as well and Keytruda infusions following the Til infusion.

https://clinicaltrials.gov/ct2/show/NCT05576077
Female 52
4/21 Dx w/ Stage 3 RC
Tumor Location: lower rectum
Tumor type: Adenocarcinoma with Neuroendocrine features
MSS stable
Tumor size (2.5cm)
4/21: 8 rounds FOLFIRINOX followed by
6 weeks of chemoradiation w/capecitabine
Near CR of primary
12/21 Scan shows 3 Liver Mets
1/22 3 more rounds FOLFIRINOX
2/22: Growth in liver mets
3/22: Liver resection #1
5/22 SBRT with TAS 102 for solitary new liver met
8/22 NED
11/22 Still NED
CCR of primary
1/23 3 new liver Mets
5/23 TIL Therapy

Irishmum
Posts: 7
Joined: Sat Feb 19, 2022 6:38 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Irishmum » Sun Mar 12, 2023 9:35 am

I had the Apheresis procedure last week. Is that different than Leukapherisis? The NCI trial you are in sounds almost exactly like the one I am in. Do you know if there are differences?
Female 52
4/21 Dx w/ Stage 3 RC
Tumor Location: lower rectum
Tumor type: Adenocarcinoma with Neuroendocrine features
MSS stable
Tumor size (2.5cm)
4/21: 8 rounds FOLFIRINOX followed by
6 weeks of chemoradiation w/capecitabine
Near CR of primary
12/21 Scan shows 3 Liver Mets
1/22 3 more rounds FOLFIRINOX
2/22: Growth in liver mets
3/22: Liver resection #1
5/22 SBRT with TAS 102 for solitary new liver met
8/22 NED
11/22 Still NED
CCR of primary
1/23 3 new liver Mets
5/23 TIL Therapy

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Beginning TIL Therapy at NIH Next Week

Postby Jacques » Wed May 10, 2023 12:23 pm

Good luck on your scans this week. When you get a chance, please let us know what you find out.

IDF108
Posts: 17
Joined: Wed Nov 16, 2022 4:23 am
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby IDF108 » Thu May 11, 2023 12:38 pm

Congratulations!! Prayed for you last night :-) Very happy!

claudine
Posts: 813
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby claudine » Thu May 11, 2023 1:38 pm

Fantastic news :D :D :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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; Xeloda/Avastin since 01/24

Markdale
Posts: 110
Joined: Wed Dec 02, 2020 4:45 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Markdale » Thu May 11, 2023 6:17 pm

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 colonoscopy
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
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex2

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Fri May 12, 2023 10:16 am

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

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Beginning TIL Therapy at NIH Next Week

Postby nmorgen » Wed May 17, 2023 10:38 pm

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
6/1/23 Opdivo CEA 2.6

rnb828
Posts: 6
Joined: Sun Oct 16, 2022 11:52 am

Re: Beginning TIL Therapy at NIH Next Week

Postby rnb828 » Fri May 19, 2023 8:47 am

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
7/23- CEA 3

User avatar
beach sunrise
Posts: 1092
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Sun Jun 04, 2023 2:28 pm

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 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens 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

Postby Mtnrspctwfe » Mon Jun 05, 2023 1:31 am

So glad you’re getting great results!!! Happy for you!

User avatar
beach sunrise
Posts: 1092
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Tue Jun 06, 2023 12:30 pm

Thank you, pccr! It feels good to have so much support.
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 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


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