Beginning TIL Therapy at NIH Next Week

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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 » Thu Mar 02, 2023 6:08 pm

Outstanding pccr, such hard work, this is great news!
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

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby IM64 » Thu Mar 02, 2023 8:53 pm

That is a really great news! My sincere congratulations!
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

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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 » Thu Mar 02, 2023 9:09 pm

This is great!
I am so happy for you!
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

prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Fri Mar 03, 2023 8:09 am

roadrunner wrote:That is fabulous news! Certainly well-earned given what you went through to get this treatment. Did you discuss where it all goes from here? Is there an expectation that you’ll likely continue to see progressive benefit, or are you in uncharted waters? If the latter, are there next steps you can consider now, or are you in a holding pattern?


I am due back in eight weeks for another round of scans with the expectations that the lesions will continue to shrink/cavitate.

It is expected that the treatment is a durable one and that the tils will be working for years, but there is the possibility that they simply stop working.

No more keytruda.

I did 5 rounds.

I will restart the fenben/liposomal curcumin /cbd oil regimen, and ivermectin dissolved in vodka every three days until my next scans.

This is a freaking miracle.
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

roadrunner
Posts: 371
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Fri Mar 03, 2023 1:50 pm

Even better! It’s great to hear that you had such a strong and exceptional response to therapy. It will be interesting to see if they were onto something with this trial, as well. Good luck with the continued recovery!
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.)

nmorgen
Posts: 79
Joined: Sat Nov 05, 2022 10:31 am

Re: Beginning TIL Therapy at NIH Next Week

Postby nmorgen » Sat Mar 04, 2023 3:01 am

I am so glad to hear that the treatment is working! Congrats! Hopefully your immune system will eliminate those mets.
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

Claudine
Posts: 771
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 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

prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sat Mar 04, 2023 6:30 pm

Claudine wrote:Where’s the dancing emoji?? So happy for you PFCCR!


cea bounced up to 1.6 but no one seemed to care very much

Not out of the woods yet.

Don’t think Ill ever be fully out :(

But good news is good news.

Hope can be a great thing.

The dx seems like it was yesterday.

It’s been a helluva three and a half years.

I’ve lost everything.

But I’m alive.
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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Thedruid
Posts: 18
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

prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sun Mar 12, 2023 7:02 am

Irishmum wrote: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?


Congratulations on getting accepted into the trial, Irishmum!!!

I had been speaking with them as well before I got the word from nih.

https://share.upmc.com/2021/01/tumor-in ... ymphocyte/

Having read the summary of Pitt’s trial, I don’t know that they use interleukin 2 and keytruda after the infusion.

If they do, it looks like the exact same trial I went through at nih.

I would say, try to put on weight before the trial (I lost 20 lbs)

If you will dm me, I will send you my cell and I would be happy to answer any of the many questions I’m sure you have.

I am nowhere near out of the woods, but have had a very good early response.
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

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

prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Mon Mar 13, 2023 1:57 pm

There are differences regarding the IL-2 and keytruda

Sent you my phone #
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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Jacques
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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.


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