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 » Wed Sep 21, 2022 3:44 pm

beach sunrise wrote:Goodness! Not sure what it all means but seems like you still have an option if the other doesn't work?


I’ll know in about two weeks or so if TILs is even an option.

If it is, then I do immunotherapy for up to two years until progression/regression or side effects become unbearable.

If it isn’t, then I do the immunotherapy for up to two years until progression/regression or side effects become unbearable.

Limbo foreva.
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

Claudine
Posts: 746
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby Claudine » Wed Sep 21, 2022 3:45 pm

Really messed up situation now.


Why? If I understand correctly:
* Current treatment works, no need for TIL -> cured
* Current treatment does not work, TIL possible and works -> cured

Of course there are all the "in between", which may not lead to a cure NOW but if QoL is good under current treatment, there's always the possibility of new cures in the future, even though I know you're not interested in pursuing treatment unless with curative intent available now. But that bridge isn't ready to be crossed, you will know a lot more in a couple of weeks. How long before the docs decide if the current treatment is working?
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: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Sep 21, 2022 3:53 pm

Claudine wrote:
Really messed up situation now.


Why? If I understand correctly:
* Current treatment works, no need for TIL -> cured
* Current treatment does not work, TIL possible and works -> cured

Of course there are all the "in between", which may not lead to a cure NOW but if QoL is good under current treatment, there's always the possibility of new cures in the future, even though I know you're not interested in pursuing treatment unless with curative intent available now. But that bridge isn't ready to be crossed, you will know a lot more in a couple of weeks. How long before the docs decide if the current treatment is working?


I think scans are done after the third or fourth treatments, then every three months thereafter.

First bridge to cross is whether my TILs respond well enough in the lab to pursue treatment at nih.

That will be determined in about two weeks time.
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

Claudine
Posts: 746
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby Claudine » Wed Sep 21, 2022 3:59 pm

I hope you manage to enjoy life in the meantime (easier said than done, I know...). How's the FL weather now? Are you still swimming daily?
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: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Sep 21, 2022 4:04 pm

Claudine wrote:I hope you manage to enjoy life in the meantime (easier said than done, I know...). How's the FL weather now? Are you still swimming daily?


I pass the eye test.

Am swimming daily and have been going to stretch classes twice a week which have really helped.

Headed to ny tomorrow for fri infusion num 2.

This shit is never ending as everyone here knows.

I’m back to living until my next set of scans.

Alone.
Last edited by prayingforccr on Wed Sep 21, 2022 4:37 pm, edited 1 time in total.
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 » Wed Sep 21, 2022 4:32 pm

I’m going to echo Claudine and argue for “the glass is (at least) half-full” here. I totally get that your TILs need to make the grade, so clearly we’re all rooting for that. Beyond that, though, the other options all seem to hold promise. If the immunotherapy works, you’ve got at least regression and more time (for curative therapy and just in general). Plus the TILs are on ice, so nothing is lost. If not, you go right to the TILs, which is a promising new approach that may yield real benefits, either in terms of cure or time. As Claudine pointed out, time isn’t just time, it’s also progress, and the potential for curative progress or more life extensions.

I definitely understand the way emotions get buffeted around on this journey, and your has heavy wind right now, for sure. But a lot of these look favorable at the moment. The one caution I’d propose: If you supplement your program with alternative therapies, I’d suggest making sure they don’t interact poorly with the immunotherapy or—if it comes to that—the TILs. I expect you’ve got that covered, but just noting in case you haven’t thought of it. I recall that your alternative approaches had some immunosuppressive effects in the past, so it’s something to be mindful of, perhaps. Anyway, good luck with this, whether it’s the immunotherapy coming through for you, the TILs, both, or even an abscopal effect!
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 » Wed Sep 21, 2022 5:04 pm

Just sent email (names redacted):

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

I don’t recall a conversation about the treatment being contingent on a response in the lab prior to infusion.

I definitely don’t remember discussing that we need to see progression whilst on the bridge treatment prior to TIL infusion.

I don’t see any indication of this in the description of the trial.

Very confused and less enthusiastic/hopeful.
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 » Wed Sep 21, 2022 6:14 pm

Follow up email:

Dr D

Will discuss ending treatment with Dr C on friday.

I will almost certainly stop opdivo/yervoy after the fourth treatment then sit tight until progression if TILs seem to be effective in the lab.

That makes the most sense to me.

If the TILs arent effective, Ill probably stop treatments after the fourth immuno unless there are dramatic results.

I can’t be in limbo anymore and don’t want to do treatments every three weeks and live between scans forever.

I’m done.
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 Sep 22, 2022 8:56 am

Opdivo/yervoy infusion 2 done.

Return in three weeks for opdivo.

Then opdivo/yervoy three weeks after that.

Scans in about two months to determine whether it’s working (shrinking lesions)

Will know whether the TILs are working in vitro in two weeks as there is a supply chain issue with the reagents.
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 » Fri Sep 30, 2022 5:15 pm

Reagents due next week.

Testing the following week.

Results the week after that.

Endless limbo.
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

MadMed
Posts: 187
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Fri Sep 30, 2022 5:58 pm

Stay strong ccr, you’re due some good news. I’m praying 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

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

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Tue Oct 11, 2022 8:35 pm

TILs responded in vitro enough to justify treatment at nih if/when SBRT and immunotherapy fails.

Scans in about 7 weeks to determine treatment.

Very happy about the news.
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

MadMed
Posts: 187
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Tue Oct 11, 2022 9:26 pm

Excellent news, get those little soldiers in there and fight on!
Good news ccr!
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: 746
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby Claudine » Wed Oct 12, 2022 9:29 am

Great news :D
Now you have several very promising options!
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: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Oct 12, 2022 10:27 am

“ When we cut out tumors for TIL they are randomly cut into multiple "fragments" that are separated to test different areas of lymphocytes. Typically tumors are cut into 24 fragments. Each fragment (depending on its reactivity) is a potential population of lymphocytes that can be isolated and grown to billions of cells for treatment. I can't tell you the exact median/mean number of fragments that are deemed reactive in our patients (remember typically 2/3 have reactive TIL but only 1/3 [50% of the reactive TIL] get treatment due to progression or other issues) but when they are reactive it can range from 1 fragment to almost all. The typical number is 3-6 based on what I've seen so far.

I think the best way to think about this is NOT that the number of fragments determines a robust treatment. You really just need an isolated population of lymphocytes within a fragment that recognize the mutated cancer (usually it is a particular mutation that is being recognized, which we will attempt to parse out). Based on your reactivity experiment, it looks like there are multiple reactivities and therefore you will get MULTIPLE fragments expanded for treatment in you infusion bag.

Let me know if this answered your questions or simply tied your brain in a bigger knot...the key thing to recognize is that you have passed a very KEY step in our protocol where others fail and now it is just a matter of making sure you get to treatment”.

I had 5 fragment reactions from the nodules removed via VATS about two months ago.
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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