Beginning TIL Therapy at NIH Next Week

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prayingforccr
Posts: 478
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Fri Jan 20, 2023 4:08 pm

Thank you, everybody.

I wasnt expecting good news headed up to md, but when I saw my cea (1.4) and confirmed it was the correct base/factor, I got a little anxious.

I am beginning the 20 day artemisinin protocol tonight, will be alternating fenben and niclosamide dissolved in dmso each day, daily liposomal curcumin, and will take ivermectin dissolved in vodka every other day until my next scans.

I’m going to kill these lesions.
Last edited by prayingforccr on Sat Jan 21, 2023 4:59 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

User avatar
beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Sat Jan 21, 2023 2:49 pm

Impressive results so far!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

prayingforccr
Posts: 478
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sat Jan 21, 2023 6:54 pm

beach sunrise wrote:Impressive results so far!


Wasn’t going to get too down if scans/bloods weren’t good.

Not going to get too high with this latest news.

But, it’s the first time in over a year and a half that I’m not living under a 24/7 damocles sword of imminent, inevitable self demise.

I have hope.

The cea of 1.4 is nuts.
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: 478
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby prayingforccr » Sun Jan 29, 2023 6:17 pm

Hi Dr G

Just curious if Dr Rosenberg has seen my early results, and if so, in any comments/thoughts relayed to you and the team?

REPLY

Yep! The whole team including Dr. Rosenberg is very excited by the response we are seeing. He emphasized that we keep a close eye on your follow up. It does happen that we see a good response on the first set of scans but then see growth layer— so it is really the durability of the response that we get most excited about. It will be very telling to see what your next set of scans look like.

Hope that helps some.

Stay well.

So………….wasn’t going to get too down if results were poor/stable. Haven’t gotten too crazy excited with latest positive tests.

But I’ll take good results anytime I can get them. They’ve been rare the past two years.

Last infusion of keytruda this week, then chill until scans first week of march.

After a considerable amount of thought, Ive held off any supplements/protocols, and will continue to do so through next scans, as I want a very clear picture of how the TILs alone are working (or not).

I will definitely be augmenting them regardless of results in March.
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: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby beach sunrise » Mon Jan 30, 2023 1:04 pm

The good results so far is a WIN!!!
You have been thru hell so great attitude you have now.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: Beginning TIL Therapy at NIH Next Week

Postby roadrunner » Mon Jan 30, 2023 3:58 pm

I agree with Beach and the others—this is definitely a big win!

In light of your trial team’s excitement, do you know what their specific innovation(s)/differentiation with this trial’s TIL approach is? Also, did they drop any hints as to whether you’re an outlier in their trial, or are they seeing promising results across the board? (I understand they may keep that close.)
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: 478
Joined: Sun Jun 28, 2020 4:44 pm

Re: Beginning TIL Therapy at NIH Next Wee

Postby prayingforccr » Mon Jan 30, 2023 8:05 pm

roadrunner wrote:I agree with Beach and the others—this is definitely a big win!

In light of your trial team’s excitement, do you know what their specific innovation(s)/differentiation with this trial’s TIL approach is? Also, did they drop any hints as to whether you’re an outlier in their trial, or are they seeing promising results across the board? (I understand they may keep that close.)


Well…….my Resident’s quote was “We were due for a win around here”.

From my understanding, the approach has much greater success with blood cancers and melanoma than it has had in epithelial cancers.

I put the chances of home run success in my case at around 5% prior to treatment based on my research and coded discussions with a few of the doctors.

I’m nowhere near spiking the football, but I’ll take good news where I can get some.

The approach was very straightforward; lesions resected by vats, extract t cells from lesions, test in vitro for response, multiply/expand tils in lab, reduce immune system to near 0, one infusion of keytruda, infuse tils via port/line, administration of as much interleukin 2 as blood tests advise (3 in my case), neupogen injections, recovery until bloods reach levels that allow you to go home, keytruda infusions every three weeks for a total of four, scans at 6 and 12 weeks.

Happy to answer any questions/fill in anything I missed.
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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