Beginning TIL Therapy at NIH Next Week

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roadrunner
Posts: 309
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Wed Oct 12, 2022 7:13 pm

This does sound quite promising. Not just clearing a big hurdle, but also sounds like you are doing at least decently as to reactivity. I hope this good fortune continues for you!
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: 460
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sun Oct 16, 2022 10:02 am

Third immunotherapy completed friday (opdivo only)

Will be doing fourth infusion in three weeks followed the next day by scans to see if it is working (I have my doubts).

NIH is ready to go if/when there is progression.

That would be my last shot.

Exactly one year ago today, md anderson gave me one year to live without treatment, so I’m in bonus time, I guess.
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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beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Wed Oct 19, 2022 9:24 am

How are you feeling on this protocol?
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 460
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Oct 19, 2022 10:33 am

beach sunrise wrote:How are you feeling on this protocol?


Just a little itchy.

Ive stopped all my other supplements/protocols, but will resume them if my scans in three weeks indicate that the CTLA-4 and PD-1 inhibitors in concert with the sbrt are working.

I have all the faith in the world in my Doctors and don’t think they would waste money, time, effort on treatments that they didn’t believe would have at least a modicum of a chance of success, but I don’t see any evidence that these work on MSS KRAS tumors.

I’m prepared for bad news and the next step would be the TIL treatment at nih after a one month washout.
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: 186
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Wed Oct 19, 2022 11:22 am

It seems that immonotherapy for MSS (Including KRAS) is at the cutting edge of research right now, so i think it's reasonable that we don't have much data. Although there's signs that it's not for naught:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8353537/

I hope you get great results, you still have options too which is good.
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: 460
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Oct 19, 2022 11:48 am

MadMed wrote:It seems that immonotherapy for MSS (Including KRAS) is at the cutting edge of research right now, so i think it's reasonable that we don't have much data. Although there's signs that it's not for naught:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8353537/

I hope you get great results, you still have options too which is good.


Interesting.

Not sure how much of an influence the additional sbrt will be, but I have to hope for the best!

Ive really dreaded restarting treatment because in my mind it always meant the beginning of the end, and just that much closer to “I’m sorry. There’s nothing more we can do for you”.
Last edited by prayingforccr on Wed Oct 19, 2022 4:49 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

MadMed
Posts: 186
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Wed Oct 19, 2022 12:00 pm

I think (and I believe you were the first one I saw mention this) the SBRT causes and abscopal effect, is an immune reaction. I'm not a Dr, but this would seem like CTLA-4 and PD-1 inhibitors + immune reaction is goodness. No?
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: 460
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Oct 19, 2022 12:14 pm

MadMed wrote:I think (and I believe you were the first one I saw mention this) the SBRT causes and abscopal effect, is an immune reaction. I'm not a Dr, but this would seem like CTLA-4 and PD-1 inhibitors + immune reaction is goodness. No?


I’m not sure what to expect/hope for.

I’ve always believed that somehow, someway I was going to get to remission.

Now that I’m getting toward the end of the road, doubt (reality?) is flooding in.

No matter how things work out (or don’t), Ive given it my all since dx.

We’ll know in three weeks!
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
beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Wed Oct 19, 2022 9:23 pm

A little itchy isn't a bad side effect. How are your blood panel counts? liver, ect?
Appt with lung surgeon is 10/31
Onc appt on Monday. I will go over things with him and dig out of him some important questions I should ask surgeon.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 460
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Oct 20, 2022 12:59 am

beach sunrise wrote:A little itchy isn't a bad side effect. How are your blood panel counts? liver, ect?
Appt with lung surgeon is 10/31
Onc appt on Monday. I will go over things with him and dig out of him some important questions I should ask surgeon.


The side effects would/will be cumulative, but so far so good.

Bloods are excellent.

Had a panel done last week.

NYU/Langone not even testing cea or 19-9 which I found to be weird, but I guess it doesn’t matter because the die is cast and treatment will be determined/guaged solely by imaging.

Also, I think the immunotherapy can have real wonky effects on the blood tests.

I’m most concerned about my thyroid, tbh.

We’re in binary territory now……..if the treatment is working and the lesions are stable or shrinking, we continue…….if they progress, then it’s off to nih.

Hoping you get some actionable answers from your upcoming consultations, beachsunrise.

For what it’s worth, my vats to remove two lesions for the TIL was not a big deal.
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: 460
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Tue Nov 08, 2022 6:36 am

SBRT and immunotherapy has failed.

Mets have progressed and there is more lymph node involvement.

There is a new lesion on my left adrenal gland.

Headed up to Bethesda today for testing/brain mri/health directive/consent forms

Treatment is expected to commence mid december.

I’m not at all optimistic and will be getting all my affairs in order before beginning.

I can’t believe this is happening.

If TILs don’t work, life expectancy is under a year.
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: 743
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby Claudine » Tue Nov 08, 2022 1:52 pm

I'm so sorry to read this! But you are not out of options yet, "it's not over until it's over"... My husband had laparoscopic adrenalectomy which was very successful, that's maybe something to look into as a TIL complement (i.e., TIL systemic, complemented with local ablations).
Try not to lose hope XXXXX
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: 460
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Nov 10, 2022 4:46 pm

Formally accepted to TIL therapy today.

Started crying.

Treatment begins the week after Thanksgiving and is expected to last 3-4 weeks.

Week 1: immune system is brought close to zero
Week 2: til infusion followed by 4-8 interleukin 2 infusion roughly every 8 hours
Week 3: keytruda
Week 4: recovery

Expected weakness for 4-6 weeks after

Scans will be performed 6 weeks after TIL infusion, then six weeks after that to evaluate efficacy.

This is it.
Last edited by prayingforccr on Sun Nov 20, 2022 9:34 pm, edited 2 times 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

Claudine
Posts: 743
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby Claudine » Thu Nov 10, 2022 7:36 pm

We’re all rooting for you, pfccr. I hope you are able to get some enjoyment out of the upcoming Thanksgiving holiday, even though I am sure it will not be easy...
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

roadrunner
Posts: 309
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Fri Nov 11, 2022 4:58 pm

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!
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.)


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