Beginning TIL Therapy at NIH Next Week

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prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sun Nov 13, 2022 12:32 pm

roadrunner wrote:Pfccr: I’m going to echo Claudine’s good wishes. As you know, this is a very promising therapy, and I think there’s a good chance you will see significant benefits from it. I hope you get the kind of response you did to your primary with TNT, but even if it doesn’t go quite that far, there seems to be a good chance it’ll carry you forward to other positive steps. Good luck!



Thank you, roadrunner.

I have no idea/expectations of what to hope for.

I just know this is my last shot.

I don’t see a lot of evidence that this works outside of melanoma and neck squamous cell carcinoma, but the doctors are enthusiastic.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

roadrunner
Posts: 310
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Sun Nov 13, 2022 2:41 pm

As I expect you’ve seen, there are a number of small published studies that have shown quite substantial gains in PFS and OS vs. controls in CRC, so it’s clear the therapy is active if well-designed. And as I think you also know, the approach in general is “hot” in the solid tumor area—lots of people are trying to fine tune it so as to get results similar to those in hematological malignancies and melanoma. I don’t know what specific therapeutic angle or dosage approach your trial employs, but past successes in CRC do suggest that further improvements are on the horizon, and may already be here. That’s probably why your doctors are optimistic. I hope they’re right!
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.)

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sun Nov 13, 2022 3:24 pm

roadrunner wrote:As I expect you’ve seen, there are a number of small published studies that have shown quite substantial gains in PFS and OS vs. controls in CRC, so it’s clear the therapy is active if well-designed. And as I think you also know, the approach in general is “hot” in the solid tumor area—lots of people are trying to fine tune it so as to get results similar to those in hematological malignancies and melanoma. I don’t know what specific therapeutic angle or dosage approach your trial employs, but past successes in CRC do suggest that further improvements are on the horizon, and may already be here. That’s probably why your doctors are optimistic. I hope they’re right!


I’m doing this treatment with the Dr credited with its development (Dr Steven A Rosenberg).

I know I’m getting the best care and am unbelievably grateful, whatever the results.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

roadrunner
Posts: 310
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Sun Nov 13, 2022 4:16 pm

Even better. Then if there advances to be had, you’re in the right place to get them.
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.)

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sun Nov 13, 2022 8:17 pm

roadrunner wrote:Even better. Then if there advances to be had, you’re in the right place to get them.


I’m DEFINITELY going back to supplement protocol after treatment.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Mon Nov 14, 2022 10:24 am

Just got off the phone with Doctor at nih.

“Success” would be stable disease for 3 months :(

Always, always, always held out hopes for remission somehow.

I will have tried/looked into absolutely everything.

Doing will and end planning this week.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

roadrunner
Posts: 310
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Mon Nov 14, 2022 5:44 pm

I understand how that sounds, but I assume that’s their low-end “success” threshold, though they hope for more, no?
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.)

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Mon Nov 14, 2022 6:37 pm

roadrunner wrote:I understand how that sounds, but I assume that’s their low-end “success” threshold, though they hope for more, no?


I’m hoping there’s a UPOD component here, but this hit me really hard.

Ive just started expectorant coughing in the past week and have lost 7 lbs.

I’m going all in on protocol after the procedure leading into six week scans (artemisinin/ivermectin/niclosamide/liposomal turmeric/mushrooms)

And I am going to fast (restricted calorie intake/no sugars) hard.

There will be subsequent scans six weeks later to determine efficacy.

I will have done LITERALLY everything I could to try to beat this at that point.

Cancer is a relentless master :(
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Nov 17, 2022 5:32 pm

Looking into ablation at Williams Cancer Institute in mexico as my final, final backup plan.

The current number of lesions is an issue in the us

I gotta try :(
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

User avatar
Thedruid
Posts: 12
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Thu Nov 17, 2022 5:55 pm

How many lesions do you have, PRAYINGFORCCR? Are they all located in the lungs or are you planning to also execute ablation in the (likely) adrenal gland?
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B colon cancer, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX started in 08/29/18 - finished 2/5/2019
Stage 4
Liver met found in 01/2020. RadioAblation in 02/2020
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy to remove 04 PALN in 11/2021
Folfox started (again) in 11/21 until 05/22
Removal of lung node in 11/2022. Confirmed metastasis

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Nov 17, 2022 6:03 pm

Thedruid wrote:How many lesions do you have, PRAYINGFORCCR? Are they all located in the lungs or are you planning to also execute ablation in the (likely) adrenal gland?


The adrenal gland is new.

I have about 18 freaking nodules confined to lungs only.

Maybe some get resolved by the tils?

Need be, do the adrenal seperately
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Nov 17, 2022 6:50 pm

Williams Cancer Institute in mexico

Anyone have any color on this?

It’s 100% out of pocket

https://williamscancerinstitute.com/
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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

User avatar
Thedruid
Posts: 12
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Thu Nov 17, 2022 8:20 pm

Hello, PRAYINGFORCCR

I remember in the past to read several comments about a procedure with laser to clean up lung nodules. Several discussions happened around 2018-2019, when I discovered I had cancer. This is why I remember this topic. I can see comments from non-cancer forums from around 2009 about this procedures, so, by now it is more than tested and approved. The procedure can clean up A LOT of nodules (up to 100 at a time) with a very good outcome. I am not a doctor, but maybe it would worth doing some research.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6753410/

I remember in the past there was only one doctor expert on this procedure, named Alex Rolle, but I know he trained several others around the world.
https://www.ctsnet.org/home/arolle

Below is a link for some discussions on this topic. On this forum or on the "Cancer Survivor Network" there is more about this procedure.

https://csn.cancer.org/discussion/comme ... nt_1611383 (one generic topic about colon cancer metastized to lungs and thi treatment)
https://csn.cancer.org/discussion/31354 ... e-to-lungs (another thread where people also mentions the treatment)

Maybe the advantage for you would be to possibly remove all lung mets at once and still keep a lot of healthy lung parenchyma. This could reduce the impact of the surgery on your quality of life if compared to other treatments that might remove a lot of lung tissue.

Again, I think some more research on the topic is needed, but maybe this is one more possible alternative for you. Let me know if I can help somehow.

Cheers
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B colon cancer, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX started in 08/29/18 - finished 2/5/2019
Stage 4
Liver met found in 01/2020. RadioAblation in 02/2020
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy to remove 04 PALN in 11/2021
Folfox started (again) in 11/21 until 05/22
Removal of lung node in 11/2022. Confirmed metastasis

User avatar
Thedruid
Posts: 12
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Fri Nov 18, 2022 8:55 am

Hey, hello, PryingforCCR

I am sorry. I added some info about the laser treatment of lung mets, but looking at another thread on this forum I can see you are completely aware of the doctor, procedure, etc... I believe the answer above did not added much to your current knowledge and options.

theDruid
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B colon cancer, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX started in 08/29/18 - finished 2/5/2019
Stage 4
Liver met found in 01/2020. RadioAblation in 02/2020
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy to remove 04 PALN in 11/2021
Folfox started (again) in 11/21 until 05/22
Removal of lung node in 11/2022. Confirmed metastasis

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Fri Nov 18, 2022 12:42 pm

Thedruid wrote:Hey, hello, PryingforCCR

I am sorry. I added some info about the laser treatment of lung mets, but looking at another thread on this forum I can see you are completely aware of the doctor, procedure, etc... I believe the answer above did not added much to your current knowledge and options.

theDruid


Not a problem, Thedruid.

Appreciate the help.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had 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


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