Beginning TIL Therapy at NIH Next Week

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Luna18
Posts: 19
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: Beginning TIL Therapy at NIH Next Week

Postby Luna18 » Sat Aug 13, 2022 11:04 am

prayingforccr wrote:
ginabeewell wrote:I hadn’t realized immunotherapy was available for patients who weren’t MSI, unless they had a high tumor mutation rate.

Really interested to follow this and hoping for all the best for you!!


Mass Gen is doing a clinical trial using sbrt/opdivo/yervoy for mss

https://clinicaltrials.gov/ct2/show/NCT ... w=2&rank=1

Will it work? Who knows?

I think between the two treatments (first one at nyu/weill beginning in two weeks, and the other at nih later in the fall) that I have a real shot at remission.

I also think you have a real shot at remission! Please, keep sharing with us. Sending you love ,
Best wishes,
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colostomy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection, and colostomy reversal
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

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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 » Mon Aug 15, 2022 5:25 pm

Proud of you for staying ahead, being proactive!
Keep your strong body and mind.
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: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Fri Aug 26, 2022 5:28 pm

beach sunrise wrote:Proud of you for staying ahead, being proactive!
Keep your strong body and mind.


Next thursday is the first of 6 sbrt, and next friday the first opdivo/yervoy infusion (concurrent sbrt and immunotherapy for abscopal effect)

TILs cooking in the nih lab in maryland.

This is it.

This is my final push.

December will be three years since dx.

I won’t do any SOC treatments if these don’t work.

I think they will.

I’m blessed to have access to them.
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 Aug 26, 2022 7:30 pm

Good luck ccr, I’ll be praying and hoping. This should work!
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 » Sat Aug 27, 2022 10:03 am

Rooting for you, it’s the future of cancer treatment! You worked hard to make this yours instead of SOC!
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

Rikimaroo
Posts: 433
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Beginning TIL Therapy at NIH Next Week

Postby Rikimaroo » Wed Aug 31, 2022 5:17 pm

Glad to hear this. SOC sucks. I hope this works for you
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

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

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Thu Sep 01, 2022 2:06 am

Thank you, all.

Today will be my first of six sbrt to a couple of lung lesions administered over the next week.

Tomorrow, I will do my first infusion of opdivo/yervoy (concurrent administration of immunotherapy and radiation)

While I am beyond grateful for the treatments, Ive been a little depressed now that the time to begin them is here.

There is no more denial.

If these treatments don’t work, that’s it. Game over.

Nowhere to run to after this.

I’m also dreading the, as yet, unknown side effects from the immunotherapy.

But I don’t have any choice but to go straight through and try my best.
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 » Tue Sep 06, 2022 5:20 pm

Great attitude going forward!
I am always cheering for you.
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: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Sep 07, 2022 7:54 pm

beach sunrise wrote:Great attitude going forward!
I am always cheering for you.


Thank you, beach sunrise

You have always been so supportive.

Always been so positive.

I did my first infusion of yervoy and my 5 sbrt to a single lung met.

Other than the usual gastrointestinal issues in the morning, all is well.

Hard to believe this can work, but hey.

Flying back to fla friday and will return to ny every third friday to ny for opdivo/yervoy infusions until my TILs are ready at the nih, at which time I will stop treatment for a month prior to TIL infusion and a month’s stay in bethesda.

Yes.

I am lucky as hell for the treatment I am getting.
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 Sep 07, 2022 8:21 pm

I will wave as you fly over my house, ha
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: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Sep 21, 2022 11:51 am

So…………..some new curve balls.

About 50% of the time the harvested TILs do not react to, or the reaction to the tumor cells in the lab is too weak, and this means the procedure would be ineffective, and hence, not pursued. We will know in two weeks.

Additionally, they will not perform the infusion/procedure unless the cancer is progressing.

Serious curveball as I have started opdivo/yervoy after sbrt a few weeks ago.

I like to list all potential outcomes to determine what my best course of action would be.

Potential outcomes:

1) TILs don’t respond so my only recourse is to pursue the opdivo/yervoy every three weeks for up to two years unless there is progression or side effects become unbearable.

2) TILs respond but lesions are shrunk by the opdivo/yervoy in which caseI would pursue opdivo/yervoy until progression.

3) TILs respond, but lesions do not respond to opdivo/yervoy would mean TIL infusion after a one month washout.

4) TILs respond, but SBRT/opdivo/yervoy achieve regression in all lung lesions. TILs would be held in reserve indefinitely.

I have no idea what to root for now.

My head is spinning as I am tossed back into limbo and facing the prospect of immunotherapy until my disease gets worse :(, or that treatments don’t work at all.

Will be going back and adding my previous protocols sans the cbd.

Might as well try and kill as much as I can while doing the immunotherapy.

Part of me wants to just say “ Fuck it, I’m done.” Three years is enough already.

The loneliness is almost unbearable.
Last edited by prayingforccr on Wed Sep 21, 2022 3:03 pm, edited 3 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

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

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Wed Sep 21, 2022 2:45 pm

Ugh sorry this got complicated. I think you want to root for TIL regardless of opdivo/yervoy.

If opdivo/yervoy give you good results/disease control great, that may get you to a point of getting to YAG or VATS and remove the cancer through other means.
If opdivo/yervoy can't control the disease, TIL has to work.


In my mind, the key is time with QoL. Ideally getting rid of the cancer would be optimal, short of that, getting a tolerable control is a good thing.
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 Sep 21, 2022 3:08 pm

It is so hard to live with uncertainty! We all want to know what will happen and when, but unfortunately with cancer one has to do their best to live with a lot of uncertainty...

When you say
they will not perform the infusion/procedure unless the cancer is progressing
, is it something new to you? That wasn't discussed before? Seems like a pretty huge omission if that's the case!

Wishing you strength for the upcoming two weeks - it's so hard to enjoy life when so much hinges on a future event.

Take care 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: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Wed Sep 21, 2022 3:11 pm

Claudine wrote:It is so hard to live with uncertainty! We all want to know what will happen and when, but unfortunately with cancer one has to do their best to live with a lot of uncertainty...

When you say
they will not perform the infusion/procedure unless the cancer is progressing
, is it something new to you? That wasn't discussed before? Seems like a pretty huge omission if that's the case!

Wishing you strength for the upcoming two weeks - it's so hard to enjoy life when so much hinges on a future event.

Take care XXXXX


I think I was hearing what I wanted to hear and failed to piece everything together.

I said to nih today that I almost regret having done the sbrt and the immuno and wish I had done nothing.

Dr said it would have been possible that I would have progressed to the point that treatment would not be an option then either.

Really messed up situation now.
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 Sep 21, 2022 3:28 pm

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


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