Beginning TIL Therapy at NIH Next Week

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utahgal7
Posts: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Mon Jul 10, 2023 3:41 pm

pfccr,

Aren't you glad that you didn't agree with your one oncologist who wanted you to go on chemo for life? If I remember correctly, I believe you said she seemed to be a shill for big pharma.
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

rp1954
Posts: 1847
Joined: Mon Jun 13, 2011 1:13 am

Re: Beginning TIL Therapy at NIH Next Week

Postby rp1954 » Thu Jul 20, 2023 8:10 pm

prayingforccr wrote:I’m blessed in that Ive had the financial resources, time, researching skills, decent scientific backround, tenacity and access to unbelievable doctors and treatments to get to this current state....

Dr D indicated, “ The good news for you is that your TIL infusion bag was HIGHLY heterogeneous with a large diversity of T-cell clones. This allows for a multi-pronged approach where the cancer will still be defeated even if it is able to evade one of those clones/targets.“

Not 100% sure on what this means, and if it is such a benefit, then why not prepare them that way for everyone?


Have you ever asked them for all your blood tests, especially the immune assays? I would.
You can probably learn to decode them with a little professional help, reading, and practice.

Do you have the past and future schedule of blood draws?

prayingforccr wrote:2000 mg fenbendazole dissolved in scant dmso and topped with grapefruit juice
3000 mg liposomal vitamin c
2000 mg liposomal curcumin
25 grams full spectrum cbd oil
1/2 teaspoon black seed oil (yuck)
200mg cimetidine taken twice a day hours AWAY from other supplements
2 teaspoons mushroom extract powder (Lion's Mane, Reishi, Cordyceps, Maitake, Shiitake, Turkey Tail, Chaga) added to morning coffee
5 clicks ivermectin dissolved in vodka topped with grapefruit juice every three days.
I am intentionally NOT doing the artemisinin protocol because the sodium butyrate really reduced my wbc count and I DO NOT want to wipe out any of the tils.
I had stopped ALL supplements/protocols 8 weeks prior to, during and 8 weeks after my TIL therapy at nih.
8 week scans were very promising (lung lesions reduced 40% linearly/80% volume) so I am resuming the protocol to kill these things once and for all.


In your position, if they are doing "big assays" every 3 or 6 months, it might create some opportunities to tune your stack, especially if you can squeeze in some of your own lab tests on whatever budget.
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

rp1954
Posts: 1847
Joined: Mon Jun 13, 2011 1:13 am

Re: Beginning TIL Therapy at NIH Next Week

Postby rp1954 » Thu Jul 20, 2023 9:11 pm

prayingforccr wrote:
rp1954 wrote:
prayingforccr wrote:I’m blessed in that Ive had the financial resources, time, researching skills, decent scientific backround, tenacity and access to unbelievable doctors and treatments to get to this current state....

Dr D indicated, “ The good news for you is that your TIL infusion bag was HIGHLY heterogeneous with a large diversity of T-cell clones. This allows for a multi-pronged approach where the cancer will still be defeated even if it is able to evade one of those clones/targets.“

Not 100% sure on what this means, and if it is such a benefit, then why not prepare them that way for everyone?


Have you ever asked them for all your blood tests, especially the immune assays? I would.
You can probably learn to decode them with a little professional help, reading, and practice.

Do you have the past and future schedule of blood draws?

prayingforccr wrote:2000 mg fenbendazole dissolved in scant dmso and topped with grapefruit juice
3000 mg liposomal vitamin c
2000 mg liposomal curcumin
25 grams full spectrum cbd oil
1/2 teaspoon black seed oil (yuck)
200mg cimetidine taken twice a day hours AWAY from other supplements
2 teaspoons mushroom extract powder (Lion's Mane, Reishi, Cordyceps, Maitake, Shiitake, Turkey Tail, Chaga) added to morning coffee
5 clicks ivermectin dissolved in vodka topped with grapefruit juice every three days.
I am intentionally NOT doing the artemisinin protocol because the sodium butyrate really reduced my wbc count and I DO NOT want to wipe out any of the tils.
I had stopped ALL supplements/protocols 8 weeks prior to, during and 8 weeks after my TIL therapy at nih.
8 week scans were very promising (lung lesions reduced 40% linearly/80% volume) so I am resuming the protocol to kill these things once and for all.


In your position, if they are doing "big assays" every 3 or 6 months, it might create some opportunities to tune your stack, especially if you can squeeze in some of your own lab tests on whatever budget.


I’m headed up to nih aug 25-28
If you know my history, you know I am very much anti SOC unless its a last resort (and even not then) and am not afraid to explore alternatives.
That being said, I am not doing anything that might deplete/interfere with the tils.
I trust that they will continue to work, but my mind says it’s too good to be true.
The artemisinin protocol wiped out my wbc count because of the sodium butyrate, so while I consider that to be very effective, I am not screwing with this.
I’m living as if I’m cancer free, but the back of my mind is always afraid that the shoe is going to drop.
I see myself in bonus time and am very grateful.
I’m regretfully proud of how Ive conducted myself.
Ive had no choice.
I’ve made the best decisions for me and have been extraordinarily blessed in the care given to me.
I remember openly bawling/crying when Dr Stephanie Goff and Dr Aaron Dinerman accepted me into the til trial.
It was literally my only chance.
I will ask them for the immune assays if it might benefit the board.

I have to wonder if your " HIGHLY heterogeneous with a large diversity of T-cell clones" was due in part to the previous supplement stack.
Those assays already could have some off/on answers for you.
Yes, seeing and discussing them could benefit the board, too.
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

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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 Jul 24, 2023 11:19 am

I'm with you, RP1954

Since the first time PrayingforCCR made the comment he did not knew why the therapy worked so well with him, I thought it could be due the non-traditional treatment we was doing before.

Cheers,

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

roadrunner
Posts: 446
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Mon Jul 24, 2023 2:07 pm

Keep in mind that absent fairly extreme circumstances (e.g., immunosuppression related to organ transplantation) CRC pulmonary metastases are quite slow-growing. In many circumstances where many lesions “appear” at once, the phenomenon is best explained by lesions that have been too-small-to-detect passing relevant thresholds contemporaneously. That’s not to say many diverse factors didn’t (or couldn’t) affect growth or growth rate, but it can be a very difficult puzzle to solve.

I would think that the relatively rarity of your response (at least for past similar trials—I recall seeing a few complete or near complete remissions, but not many), the trial team will be very interested in your case, and trying to find evidence to support any theories they have.
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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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Tue Jul 25, 2023 4:28 am

prayingforccr wrote:... I’m going to be asking some questions aug 25-27 when I head on back up to maryland for scans.

    One thing you might want to look into before your August 25 meeting with the doctors is to check the link below to see if there is anything relevant about "Multimeric Binding" that might be relevant to your case. In your case, your cocktail of supplements might have had some kind of "Multimeric Binding" effect that enhanced your TIL outcome. (Just a suggestion... I'm not sure if it is relevant or not to your situation.)

    IGM-8444
    The potential of multimeric binding
Death receptor 5 is a member of the tumor necrosis factor receptor superfamily (TNFrSF) and is often expressed on the surface of cancer cells. Strong activation of the DR5 pathway requires multiple receptors to be cross-linked simultaneously by an antibody or other binding agent to create an apoptotic death signal to the cell. Unlike traditional IgG antibodies, IGM-8444 has 10 binding units, giving it an advantage to cross-link multiple DR5 receptors at once, sending a stronger signal to cause cancer cell death.

Reference : https://igmbio.com/pipeline/igm-8444/

User avatar
Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Beginning TIL Therapy at NIH Next Week

Postby Peregrine » Wed Jul 26, 2023 12:34 am

prayingforCCR wrote:... I will ask them for the immune assays if it might benefit the board...

I, for one, would be interested in knowing what your various Immunoglobulin levels are.

https://www.hopkinsallchildrens.org/Patients-Families/Health-Library/HealthDocNew/Blood-Test-Immunoglobulins-(IgA-IgG-IgM)-(1)

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Beginning TIL Therapy at NIH Next Week

Postby MadMed » Fri Aug 04, 2023 12:13 am

In clinical trials, the therapy seems to work more than 80 percent of the time.


What!
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

roadrunner
Posts: 446
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Sat Aug 19, 2023 7:25 pm

I am really hoping for continued good news. Your success with this therapy is an inspiration and, I hope, an indicator of the progress with TIL therapy they predict in this paper. I don’t suppose they tell you too much about their overall ongoing results, but their positive attitude toward you and your individual results has to be a tremendously exciting context clue. I wish you the best going forward!
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

Markdale
Posts: 103
Joined: Wed Dec 02, 2020 4:45 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Markdale » Fri Aug 25, 2023 5:04 am

Hey preyingforccr, sorry it hasn’t worked how we all hoped. You still have options, it’s great they’re still willing to operate. Hope you’re feeling well
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
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

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Beginning TIL Therapy at NIH Next Week

Postby Rock_Robster » Fri Aug 25, 2023 5:31 am

prayingforccr wrote:There is also discussion of repeating the entire treatment.

Sorry mate, not the news we were all hoping for. Still, it sounds like you’re nonetheless in a much better place than before this treatment. And the fact that you can even type that sentence confirms you’re one tough MF.

All strength and luck for the next wave of things.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

Markdale
Posts: 103
Joined: Wed Dec 02, 2020 4:45 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Markdale » Fri Aug 25, 2023 5:35 am

prayingforccr wrote:
Markdale wrote:Hey preyingforccr, sorry it hasn’t worked how we all hoped. You still have options, it’s great they’re still willing to operate. Hope you’re feeling well


The fact that they are willing to repeat the entire procedure is astounding.

omg was that a difficult, terrible experience and not one I am at anxious to repeat.

But I would give it one, last shot.

True mate, sounds like they believe in the science behind the treatment and they also believe you have a chance of beating this.
The way I see it is some shrunk so it could’ve worked on some micro Mets that are not visible which would be in your favour, they will take 2 Mets out reducing your load and possibly repeating the whole thing with an even bigger variety of TILS.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
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

Bianca10
Posts: 119
Joined: Thu Jun 29, 2023 4:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Bianca10 » Fri Aug 25, 2023 8:05 am

prayingforccr wrote:CEA has increased every three months from 1.2 to 1.6 to 2.0 to now 4.2

Not good.


Hey,

Firstly apologies for the results but as others have said it sounds like your team still have options and are being relatively optimistic which is always positive!

I still don’t know how to very easily navigate this site so please forgive my ignorance, but if you don’t mind me asking, when the nodules were discovered was surgery not an option at all? I have read and understand you didn’t want to pursue chemotherapy.

Bianca10
Posts: 119
Joined: Thu Jun 29, 2023 4:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby Bianca10 » Fri Aug 25, 2023 9:35 am

There were too many, Bianca.[/quote]
Really sorry to hear that, but fingers very tightly crossed for the coming weeks/months and the potential new plans.
Hang in there, you’ve got this.

utahgal7
Posts: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby utahgal7 » Fri Aug 25, 2023 10:28 am

pfccr:

Wow, that's tough news. It's extremely consoling that the clinical trial doctors are willing to try again. That says a lot. Although the trial was difficult, I would definitely try again. Also, I think it is consoling that your doctors are NOT drawing a line in the sand by requiring additional chemotherapy. Look, I know you don't want to hear this and I know you are opposed to additional chemotherapy. Chemo sucks, I get it. I am on FOLFIRI now. It's not so bad, much easier than CAPOX.

I know there are some isolated cases where patients were able to be cured without ANY chemo, but those cases are few and far between. Every patient that I have known that has resisted chemotherapy, unfortunately, it wasn't a good outcome. It is something to think about.

Sending out positive vibes to the universe for you. Despite everything you are going through, I hope you have been able to enjoy summer.

Take care - Chris,

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


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