Beginning TIL Therapy at NIH Next Week

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IDF108
Posts: 15
Joined: Wed Nov 16, 2022 4:23 am
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby IDF108 » Fri Oct 13, 2023 6:48 pm

Rooting and praying for you!

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Fri Oct 13, 2023 7:27 pm

Good luck, brother!
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: 201
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Sat Oct 14, 2023 10:35 am

Wishing you the best of luck, Chrissy!
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

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Bpaint » Mon Oct 16, 2023 7:58 am

Thinking of you!
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby claudine » Mon Oct 16, 2023 10:27 am

Hope all goes well, keep us posted, you've been a real fighter!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 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; Xeloda/Avastin since 01/24

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Thedruid
Posts: 24
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Mon Oct 16, 2023 2:41 pm

Hello, PrayingforCCR

Having 4 lesions (that will become 2 soon) compared to the ammount of leasions you had before is an outstanding improvement and puts you back on the fighting arena. News surely could be better, but could be way worse too!
One step at a time. Hopefully you will having nothing new to fight and then there will be only the 2 left to worry about!
My best wishes for you !!!
TheDruid
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Beginning TIL Therapy at NIH Next Week

Postby claudine » Wed Oct 18, 2023 9:58 am

This is great news!!! Cancer battle is almost never a "one time done deal", it's more of a "guerre d'usure" where you have to keep hammering at it until it finally disappears. You seem to be on a good path!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 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; Xeloda/Avastin since 01/24

utahgal7
Posts: 201
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Wed Oct 18, 2023 11:56 am

Glad that you aren't in a lot of pain. Did you get PCA (patient controlled anesthesia)? If so, wonderful! Hope the chest tube isn't causing you too much distress. When I had VATS, I asked for a little something something before they pulled the chest tube.

You are a tough guy. I am sure that you are going to recover in no time. You got this, Chrissy!

Take care!
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: 201
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Wed Oct 18, 2023 2:43 pm

How long do you have to stay in the hospital this time? Hospital stays are no bueno. In no way am I trying to diminish what you are going through, because I can't even imagine how difficult it is. Plus, I don't want to be a shitty friend like that.

However, I have a male friend with colon cancer and he has literally been in the hospital at least 9 months out of the last year. He has experienced one setback after another. Unfortunately, he is ineligible for any trials because of multiple mets in various organs and he has accumulated over 1 million in medical bills.

I know your situation sucks but it could be much much worse, my friend.
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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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Thu Oct 19, 2023 5:42 am

Well, its out of there, YAY! Now let the answers be revealed for next step.
It's just amazing you found this therapy and was accepted! This could open the door for so many more of us.
Of course the long days in isolation during treatment would suck but who cares really.
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

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Fri Oct 20, 2023 11:15 am

Does this change their approach at all? Is there a surgical
option for the 2.2cm nodule?
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

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Thedruid
Posts: 24
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Fri Oct 20, 2023 12:53 pm

roadrunner wrote:Does this change their approach at all? Is there a surgical
option for the 2.2cm nodule?


Hello, PrayingforCCR,

If we are talking only about this nodule, there are options for it. Options range from surgical ones (but you are just leaving a VATS session) to simpler ones, like ablation. Of course, the usage any procedure needs to be carefully evaluated due to the location of the met, the possible presence of large blood vessels, etc...

Take a look at the link below:

https://www.annalsofoncology.org/article/S0923-7534(19)31500-5/fulltext#:~:text=Conclusion-,Radiofrequency%20is%20an%20option%20for%20treatment%20of%20small%20size%20lung,ones%20below%202%E2%80%933%20cm

Regarding radio ablation... I believe 2.2cm is on the limit of the acceptance size for radio ablation, but if needed theoretically you can just use larger caliber ammo, which, in this case is microwave ablation.

I am personally not a huge fan of SBRT, since it could make futures surgeries on the site more difficult due to tissue damage. On top of the "hot" ablations above there is also crio ablation, etc...

So, if the question was only about the 2.2cm nodule I believe the answer would be "there surely are treatments". The tricky part is not about the "surgical option", but the "approach" you mentioned above.

For any kind of surgery, surgeons are always looking for the big picture before giving green light to execute any procedure. Their main concern is to use a procedure to remove the 2.2cm nodule, which will surely also damage part of the surrounding lung tissue and then have more nodules in the near future to also remove, which will damage more tissue, etc... For everything I could read between the lines on papers for lung met removal, surgeons are always trying to use their procedures as a silver bullet, so, it will damage a little, but if there are no big probability of more mets on the long run, then it is ok.

I believe you need to discuss with a good surgeon that is aware of the treatment you are doing and the real possibility to have no more mets in the future, since your treatment could kill all the new small ones.
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23

User avatar
Thedruid
Posts: 24
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Beginning TIL Therapy at NIH Next Week

Postby Thedruid » Fri Oct 20, 2023 1:10 pm

roadrunner wrote:Does this change their approach at all? Is there a surgical
option for the 2.2cm nodule?


PrayingforCCR, I have one question for you I forgot to ask on my previous post: Regarding this 2.2cm "mass" found on your last exam.... was it the first time people saw it or was it present before and now they are just reporting its new size ?
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23

utahgal7
Posts: 201
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Fri Oct 20, 2023 2:21 pm

Sorry I am having a "blonde" moment, lol. I just want to make sure I understand you correctly, Chris. So you have 6 remaining lesions, am I correct? In line with Thedruid's previous posts, could these remaining 6 lesions be ablated? If so, could you possibly have lesions ablated first and then do the TIL therapy to kill any lingering micro metastases?
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: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Mon Oct 23, 2023 10:17 am

This situation seems pretty complex, and given your prior success with the TIL approach, that certainly seems to be your best option, at least from a distance. It sounds like you have 3 growing lesions (including the 2.2cm nodule), and 4 that are “stable or shrinking.” If that’s right, there may well be a point down the road where you may have a legit surgical option (though of course if the TILs clean it all out that’s best). I’d keep an eye on that possibility, e.g., all remaining problematic lesions are in one lobe, or nearly so, because at such a point a segmentectomy or lobectomy might be a good option. As I’ve related elsewhere, my LUL lobectomy was a bit of a challenge at first, but now (slightly over three months out) I have no effects on my life except that my runs are slower, and my max post-surgery is 2.75 miles (as opposed to 3-4 pre-surgery, but I’m still improving). So it may be no big deal if you have to go that way. I think you’re pretty fit and active from your prior accounts, so the only real long-term downside there would be loss of margin for any recurrence.

But all in all, that may be an option down the road. I think you’re in a very promising place, and while I get the “5 yrs.!” thing (I’m at 4 yrs./3 months), I hope it’s some comfort that—as your trial Doc said—you’re WAY better off than you were, and you’re an outlier and an inspiration to all of us.
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


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