Beginning TIL Therapy at NIH Next Week

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roadrunner
Posts: 471
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Fri Aug 25, 2023 11:06 am

Sorry you got this less-than-ideal news. It does sound like you may still be in a good position in the “whack-a-mole” game, which still looks winnable. Also sounds like there is still hope for a systemic redo if necessary. Seems odd that most went one way and a few the other, but it seems the numbers are on your side and I guess that’s what they’ll investigate when they do the wedges. Hang in there, brother! This may well (at worst) be early innings.
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

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Fri Aug 25, 2023 12:24 pm

Chris,

I sent you a DM.

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

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Fri Aug 25, 2023 2:20 pm

pccr,

No worries...I guess you'll see it when you see it...lol
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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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Fri Aug 25, 2023 9:57 pm

Peregrine wrote:
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.

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beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Sat Aug 26, 2023 12:13 am

I know you feel deflated even though you expressed it could happen is still hard to soak up.
You still have options for the ones that evaded TIL's. That is very good news!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Sat Aug 26, 2023 2:18 am

Peregrine,

Sorry that I used the wrong terminology (DM not PM) as well.

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

roadrunner
Posts: 471
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Sat Aug 26, 2023 10:56 am

Just shooting from the hip:

I think you need a full break down of lymphocyte numbers and trends. I’d also want to know if they’ve seen effects on same, and do you fit into those patterns? Do they mean anything for your prospects?

I think I’d also ask whether they’ve seen your pattern of response before, and if so, what has happened long term?

P.S. re: Lymphocytes—Do you know what your low lymphocyte numbers are caused by? Pelvic radiation causes a drop, but it recovers at least somewhat. Certainly after two years, at least in most people. Also, you haven’t had chemo for a long time. The timing of any drop and likely causes would be potentially interesting to me. Of course, given what you’ve gone through for TIL therapy, that might be obscured at this point. Just mentioning because you said you’ve had a “consistently low” lymphocyte level.

I’d also say this—Pulmonary mets tend to be slow growing, so much so that there are some serious folks who believe pulmonary metasectomy is unjustifiable. (Obviously, we’ve got lots of people on just this forum who prove that wrong.) while you’re asking all the right questions around this, you seem to have reduced the burden greatly, perhaps putting surgical/ablative management/cure back on the table. I recall sometime ago that MD Anderson (I believe) gave you 3 years with chemo and 1 without. I’d be interested in available time periods now in case you can’t reverse it with the TILs. With surgical/ablative “whack-a-mole”/chemo (I know you’re opposed)/without. That may be several years or more with a well-chosen plan. That matters because things are moving very fast now in terms of new therapies. You’re living proof that trials can be life-savers, so time should be part of your strategy, I believe. At least if necessary.

I’d note that even just your list is a ton for these guys to handle. Over time, though, I hope you can get this info and more. Your situation is hyper-complex, maybe even unique.

Sorry, that’s pretty disorganized thinking. I will give it more thought.
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

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Sat Aug 26, 2023 5:30 pm

I know you are stressed over your CEA. I stress over my CEA all of the time. My oncologist told me at my last appointment that he doesn't get worried about CEA until it reaches at least 8. So don't panic yet.
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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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Sat Aug 26, 2023 10:51 pm

prayingforccr wrote:These are the questions I have queued up for this week’s follow up:

How many lesions are there currently?
How many lesions were there in november?
Have any lesions completely resolved?
Are any lesions “on the verge” of being completely resolved?
Are there any new lesions since november?
Did the three or three or four lesions in question shrink initially?
How does their size compare to november?
What are the possible reasons treatment stopped working?
I have had a consistently low lymphocyte count in my bloodwork (around 10%) Could this have impacted the results?
Supposing these are the only three or four renegades, the remaining lesions resolve, what would our plan look like?
When would the decision be made to ablate/sbrt/vats the remaining one or two currently progressing lesions?
cea 1.2, 1.4, 2, 4 very concerning
How much smaller is adrenal met?
Currently, what is the best outcome we are hoping for?
Is it possible/probable/unlikely the remaining lesions and adrenal lesion could fail and progress?
Why might repeating the treatment a second time work when it didn’t this time (what, if anything would be different)?

The doctors gave me VERY little information as they had just seen the scans, and so, had very little themselves.

Asking for help/input as to questions you guys think I should ask.

As always, thank you for caring.

Last edited by Peregrine on Wed Aug 30, 2023 1:18 pm, edited 1 time in total.

Bianca10
Posts: 125
Joined: Thu Jun 29, 2023 4:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Bianca10 » Wed Sep 06, 2023 10:46 am

prayingforccr wrote:VATS to remove two of the breakaway lesions is scheduled for October 17 preceded by scans to determine the status of the remaining lesions.

The best thing that could happen between now and then is for the 9 lesions that continued to show treatment effect continue to shrink without mutation.

The worst thing would be for some or all of those nine to mutate/show progression in which case treatment would be thrown into doubt.


Stay positive! You’ve got this!
Whilst there’s options on the table there’s always hope!

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beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Wed Sep 06, 2023 6:44 pm

Super great news!
Think about the positive now.
You probably already know this so reminder that walking and a spirometer def helps get lung function back quickly.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1861
Joined: Mon Jun 13, 2011 1:13 am

Re: Beginning TIL Therapy at NIH Next Week

Postby rp1954 » Wed Sep 06, 2023 11:37 pm

I'd consider more vitamin D3, astragulus, beta glucans, immugenic and mushroom powders for the next 5 weeks.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Markdale
Posts: 109
Joined: Wed Dec 02, 2020 4:45 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Markdale » Thu Sep 07, 2023 12:26 am

I might of missed it in your previous posts, will you go through the whole procedure again will it have an effect in the tils from previous? When they harvest the new tils and grow them do they think they will work on the Mets that have shown a good response?
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex2

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Fri Sep 08, 2023 8:51 am

Chris,

You got this. I have been praying for you. Stay positive.


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

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

Re: Beginning TIL Therapy at NIH Next Week

Postby L0729 » Sat Sep 16, 2023 6:24 pm

prayingforccr wrote:
beach sunrise wrote:Super great news!
Think about the positive now.
You probably already know this so reminder that walking and a spirometer def helps get lung function back quickly.


This will be my second vats IF all goes “well”

The first one banged me up for about a month, but all things considered, wasn’t a big deal.

It’s the preliminaries, really.


I’m cheering you on and hoping you get fantastic results, as I think this is an area if they get it right could benefit many. I’m doing soc with a trial drug right now folfiri/Bev and really not dealing well with folfiri. Since I’m newly reversed the rectal pain is excruciating, not sure if it’s radiation damage newly awakened or what but I don’t think I can do this much longer. TIL seems like an alternative I’d like to pursue, though I do not know if I have the right attributes for TIL. I think you’ve had a really get response and also options for dealing with the troubling Mets. Appreciate all those who have done trials into uncharted waters. Keep at it! Looking forward to reading on your success
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


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