Beginning TIL Therapy at NIH Next Week

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JulesW
Posts: 32
Joined: Thu Jun 21, 2018 1:48 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby JulesW » Wed Jun 14, 2023 12:21 pm

Hi Praying for CCR,
I recently learned of someone else with lots of lung mats and running out of standard of care options. She's asking about trials what was the number of the trial? NCT if you don't mind
Best, JulesW
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.7cm)
Laser pulm. metastectomy B Germany 10/18 and 11/18
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
10/21 MSK partial cystectomy node turned out to be peritoneal implant
12/22 UCSD CRS surgery PCI score 8, 1m small bowel resected
NED after 6 and 1/2 years

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Beginning TIL Therapy at NIH Next Week

Postby Rock_Robster » Thu Jun 15, 2023 7:39 pm

prayingforccr wrote:
JulesW wrote:Hi Praying for CCR,
I recently learned of someone else with lots of lung mats and running out of standard of care options. She's asking about trials what was the number of the trial? NCT if you don't mind
Best, JulesW



https://www.clinicaltrials.gov/ct2/show/NCT01174121

Happy to help/answer questions anyway I can.

You’re a good egg :)
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

JulesW
Posts: 32
Joined: Thu Jun 21, 2018 1:48 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby JulesW » Mon Jun 19, 2023 3:24 pm

Hi Praying for CCR,
Thanks for the trial number. Hope you're doing all right. I had a major cyto reductive surgery at UCSD just before Christmas 2022 for peritoneal mats from recto-sigmoid cancer. Currently I'm technically NED but peritoneal mets have a high rate of recurrence. I haven't exhausted standard of care but I'm taking note of trials that look interesting.
Best wishes to you
JulesW
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.7cm)
Laser pulm. metastectomy B Germany 10/18 and 11/18
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
10/21 MSK partial cystectomy node turned out to be peritoneal implant
12/22 UCSD CRS surgery PCI score 8, 1m small bowel resected
NED after 6 and 1/2 years

JulesW
Posts: 32
Joined: Thu Jun 21, 2018 1:48 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby JulesW » Wed Jun 21, 2023 6:02 pm

No natural remedies. Just alternative laser metastectomy when I was told I was inoperable 5 years ago after they found seven spots in my lungs the largest of which was 1.7 cm
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.7cm)
Laser pulm. metastectomy B Germany 10/18 and 11/18
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
10/21 MSK partial cystectomy node turned out to be peritoneal implant
12/22 UCSD CRS surgery PCI score 8, 1m small bowel resected
NED after 6 and 1/2 years

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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Fri Jun 23, 2023 7:58 am

pfccr -

While you are waiting for your end-of-August follow-up scan to take place, are you following any special diets or special regimens to help build up your immune system?

User avatar
Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Sun Jun 25, 2023 2:24 pm

prayingforccr wrote:... My goal is to climb Camelback Mountain on my birthday in june next year...

Best wishes for a good scan on August 24. After that you will have about 10 months to work on regaining lost muscle mass and strengthening your feet and legs in preparation for the Camelback Moutain hike. It might help to strengthen your feet and ankles now by taking long walks along the sandy beach every day.

Will you be doing the hike alone, or will somebody be accompanying you? Have you done this particular hike before?

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

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Sun Jun 25, 2023 7:33 pm

prayingforccr wrote:Sent some quick questions today to nih about some issues that had been bothering me/creeping into my everyday:

1) As a responder, what is the % of my response as of my last scans?

2) Understanding the tils do not replicate/reproduce, is it possible/probable/unlikely that they will exhaust themselves/no longer be effective?

3) How many lesions were in my lungs as of last scans (including those showing treatment effect)? Are there fewer than november’s baseline?

4) is it possible/probable/unlikely that the lesions could mutate rendering the tils no longer effective?

Answers:

1) By RECIST 1.0 criteria, you are -52.2% in your target lesions. Remember this only includes a select few of your tumors (5 lung and 1 adrenal). I actually would imaging your % decrease is actually larger if we accounted for ALL of your lesions; by estimates your disease is approaching 75% down.

2) TILs CAN replicate. There are stem-like memory/progenitor TILs that have the sole job of harnessing a "memory" phenotype that can be expanded in population once the target (your cancer) is seen again. This is why TILs work so well to dissolve micro-metastatic disease that we cannot see on scans; it is still possible for all your clones to become exhausted and then no longer be effective, but TILs can indeed divide and expand beyond their initial expansion in the lab and once the patient receives them with IL-2

3) There are probably 10-20 total lesions in your body. Some have disappeared, so yes there are fewer than the November baseline scans.

4) Cancer can always mutate or change, but usually this mutation will have already happened (if it happened/happens at all) when it had settled into wherever it is now (lungs, adrenal, etc...). There are two big evasion mechanisms for cancer with immunotherapy that we have seen.....LOH (loss of heterozygosity, meaning the tumor loses the HLA gene that allows it to present the cancer mutation protein on its surface to the T-cell) or loss/change of antigen (when the original cancer mutation that was targeted by the TIL clone has either been lost/deleted or changed/mutated further). The good news for you is that your TIL infusion bag was HIGHLY heterogeneous with a large diversity of T-cell clones. This allows for a multi-pronged approach where the cancer will still be defeated even if it is able to evade one of those clones/targets.



This is such great information pccr, thank you for sharing. I read it as good news for your situation, i pray and hope it pays off completely.
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

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby claudine » Mon Jun 26, 2023 10:41 am

I feel like you're not of the most optimistic nature, pfccr, but these news ought to give you a positive boost! That's terrific that the treatment is working so well for you :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

Colongirl2021
Posts: 8
Joined: Tue Oct 05, 2021 9:10 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Colongirl2021 » Sun Jul 02, 2023 11:30 am

This is my first post and I'm not sure how to use this forum or tag people but prayingforccr do you mind sharing your mutations with us? Are there any posts to discuss the quality of life on this trial? Was it physically very hard on your body? Is there a way for me to DM you to ask questions. I'm thinking about enrolling but nervous as i had a bad experience on an immunotherapy trial.

L0729
Posts: 75
Joined: Sat Mar 26, 2022 4:40 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby L0729 » Sun Jul 02, 2023 3:43 pm

The trial you are doing. Would you say it’s more for someone without liver involvement?
So happy to see it’s working, sounded like it was tough but worth it
2/22 - Dx stage 4 rectal cancer T4 4cm, 1cm from AV - age 60
EMVI + MSS 2 liver mets 2.1 cm and 1cm
Kras G12V, TP53, RAD51D
3/22 3 Folflox 6 1w/o oxi.
6/7 - Liver resection, liver abaltion
7/7 28 days chemoradiation
10/26 - LAR, temp. ileo. (1/9 nodes, partial response - T3, moderately diff)
12/22-2/23 4 Folfox at 50%
4/3 - Reversal
3/8 scan clear, monitoring lung nodules
6/29 scan, new liver 3cm met, 3 lung nodules increasing, susp. subcarinial lymph node

Colongirl2021
Posts: 8
Joined: Tue Oct 05, 2021 9:10 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Colongirl2021 » Sun Jul 02, 2023 10:25 pm

Thank you so much for your willingness to share your number with me to discuss the trial. It won't allow me to PM you. When I tried it states "We are sorry, but you are not authorised to use this feature. You may have just registered here and may need to participate more to be able to use this feature."

Would you be willing to PM me? Thank you so much!

User avatar
Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Wed Jul 05, 2023 1:01 am

prayingforccr wrote:...
Can't figure out how to delete dms in full mailbox so as to send more


You can click on the link below and follow the instructions for "If folder is full"

Rules, folders & settings
https://coloncancersupport.colonclub.com/ucp.php?i=ucp_pm&mode=options

You can also opt to "Add folder" and call it something like "Archive" so that you have an empty folder where you can move messages from your Inbox to Archive in order to free up space in your Inbox.

In fact, you can add up to four additional folders, each one with a different name, and each one can hold up to 50 messages, so, altogether you can save up to 200 of your old Inbox messages by moving them from the Inbox to one of the newly created folders.

PS: On this message board we do not use the term "DM". Here we use the term "PM", which is short for Personal Message.

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Mon Jul 10, 2023 12:59 pm

That’s fabulous news! At least a great step on your journey to a cure to have that perspective from your experts. Inspirational.
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
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

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

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Mon Jul 10, 2023 1:17 pm

holy smokes that's awesome to hear!
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

utahgal7
Posts: 201
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Mon Jul 10, 2023 2:23 pm

That's great news! It sounds like you had an incredible response.

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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles


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