TIL Immunotherapy at NCI

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Maia
Posts: 2207
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Thu Feb 16, 2017 7:57 am

Hey, Celine's interview with Joan Lunden is on YT now, also: https://www.youtube.com/watch?v=Talj5pIrMLw

I just watched again...Got so happy for Celine and the family that I have to get up from my chair. And later, I could focus better on my hero, super admired scientist (years ago, I called this trial "Rosenberg trial", cfr. the second post in the first page of this thread). I see Dr Rosenberg and I want to take a plane and go and give him a hug. Imagine a whole life,so many years devoted to beat cancer and he starts to see these results. Still, so humble, such a hard worker. Mazal Tov, well done, Steven.

DAS43
Posts: 24
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Wed Feb 22, 2017 1:11 pm

Sending prayers to jdepp. Who should be a NIH starting the process for cell day, according to last post.
11/13 total blockage DX colon cancer IV, colostomy
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs

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Maia
Posts: 2207
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Wed Feb 22, 2017 4:35 pm

Yes!!!! Strong thoughts his way.

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Sleen
Posts: 278
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Feb 22, 2017 9:15 pm

Good luck to JDepp!!!

Celine
my blog: Cancer Riot

April 2016: lower left lung lobe removed. NED
8 mo. f/u: Progressive Disease in 1 of 7 tumors.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
partial colectomy Sep 2013 :: KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 26 yrs. kids: 21, 18, 14, 9, 7
SE Michigan home schooler, mechanical engineer, and programmer.

Pita
Posts: 630
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: TIL Immunotherapy at NCI

Postby Pita » Thu Feb 23, 2017 6:16 am

This is detailed of what I went through to apply for trial screening. If you're looking for actual trial info, this is not it, this pertains about how to prepare to be approved to start screening. Celine's post here, her blog and the TV special goes into the details of the trial itself.

My Onc's staff did the paperwork then forwarded it to me to forward to NIH/NCI along with uploading copy of last CT scan to PACS and this is when the trouble began. Onc closed over the weekend so I had to do everything myself, paperwork from Onc was not complete. I have a Mac and no Word program. Found that I could buy Word for one month and get a one time free 30 day trial, perfect! Went to install and my laptop is too old for it to install. Returned Word. Found a place that I could use Word online and download my papers, it was a struggle but I finally finished it and forwarded it along with latest blood test results.

The latest CD that I got had copies of scans for 1 PET, 2 CTs and a Xray, much too big to upload even though I zipped them. Left laptop on overnight and line was still in the same spot when I woke. Called the Dosimetrist where I had radiation and he suggested to get a new CD with only the latest CT on it and send only the Dicom file that has the pictures, glad the file department was open late. Yay, uploaded then I get a note from man at the Film Library that the file uploaded but no picts in it. What a wonderful help he was, uploaded and he sent note to RN/OCN and original contact that it uploaded.
Also think about what time zone you are in, I am PST/California and Maryland is East Coast, this was sometimes a problem. Remind them of this and give cell # instead of home # if you go out, they call many times.

I was contacted by someone that screened my application and soon after I heard from a Research Nurse Specialist. Usually this takes one week but was delayed due to my marking my app YES I am currently on active therapy treatment and the answer was no. Once it was corrected, everything moved pretty fast. What an amazing lady this RN/OCN was, she bent over backwards to help. She coordinated all with my Onc and Onc nurse.
Unfortunately my Onc thinks the Folfuri/Avastin is working based on reports of PET and CT scan. Applied for another trial at City of Hope and that Onc said my cancer had progressed, received opinions 2x from each Onc, no change. RN/OCN said I must have progression to get into the TIL, FDA requires it. So we agreed for me to send in the actual CD and reports that I mentioned above with PET and CTs. Sent overnight so she could submit to Board, which meets on Wed and Thurs, to go over and explain the split decision to them. You must have no prior treatment for 30 days once the Board approves.

Now a new problem pops up. My Onc wants me back on chemo, been without for 4 weeks now and don't know how much longer I would have to be off. He also said to think about the toll it would take on me and my husband to fly 6 hours one way the many times we would have to go there and part of process is to stay in hospital for 30 days. Alternative would be to go on chemo, take new CT scan April 30, be off chemo for 30 days. If progression then send CD and I will start where I left off, get approval from Board. Now the problem becomes my age, I was 70 Nov 2016 and that is their limit. Still might not get approved because the time it takes for the trial I will have turned 71. Chance it or not? RN/OCN also told me that they screened 33 applicants and out of those 33 only 3 were approved to start the trial. Pretty crappy odds I think for me, so I decided to withdraw for now.
Started chemo the 21st, have been approved for immu trial at City of Hope and only need to be off chemo for 14 days before screening. Also appt set up to see Thoracic Surgeon to get an evaluation.

This same TIL NCT02757391 has started? at MD Anderson in Houston, Texas 3 hours away and there are plans to start in San Diego, under 2 hour drive and neither have an age limit. Have a call into MDA and/or will wait for San Diego.
I sure hope this helps others out to prepare for the screening, for me it was not a piece of cake!
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

jdepp
Posts: 471
Joined: Sun Sep 28, 2008 7:53 pm

Re: TIL Immunotherapy at NCI

Postby jdepp » Thu Feb 23, 2017 6:54 am

Thanks all. Yes, I'm starting the chemo portion of the trial later today. Having read Akasleen's play-by-play and commentary, I have an idea of what to expect. Best wishes to everyone pursuing every strategy against cancer.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16

Lee
Posts: 4529
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Thu Feb 23, 2017 11:13 am

good luck jdepp

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

DAS43
Posts: 24
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Mon Mar 20, 2017 7:12 pm

I am home from NIH

Just wanted to let everyone know I was released on Saturday. I truly believe I received the best care from them. The chemo is tough. Il2 is worse. The Doctors and nurses do a great job getting you through it. I received 98 billion cells truly amazing. I was only able to handle 4 doses of the IL2. It gave me horrible shakes. I have had patients who have had grandmal seizures. I have a new appreciation for what they feel. ( I know my shakes weren't half as bad as a seizure. ) very tired but happy to be home. Already got lots of love from the grand babies.
11/13 total blockage DX colon cancer IV, colostomy
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs

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Maia
Posts: 2207
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Mon Mar 20, 2017 9:24 pm

So so so happy and hopeful for you, Deb!!! Let's wait for those little powerful players do their wonderful job!!!
Sending strong, best thoughts your way! : )

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Sleen
Posts: 278
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Mar 21, 2017 9:22 am

CONGRATULATIONS, Deb!

Celine
my blog: Cancer Riot

April 2016: lower left lung lobe removed. NED
8 mo. f/u: Progressive Disease in 1 of 7 tumors.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
partial colectomy Sep 2013 :: KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 26 yrs. kids: 21, 18, 14, 9, 7
SE Michigan home schooler, mechanical engineer, and programmer.

jdepp
Posts: 471
Joined: Sun Sep 28, 2008 7:53 pm

Re: TIL Immunotherapy at NCI

Postby jdepp » Tue Mar 21, 2017 11:40 am

Welcome back, Deb. I agree with you: the chemo was bad but the IL2 was worse. From my experience, after a few days resting at home, the energy starts to come back fast. It helps that people aren't stealing your blood every day and taking your vital signs every 4 hours :)

Wishing you the best. /jdepp
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16

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DH2Sleen
Posts: 58
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Tue Mar 21, 2017 1:31 pm

I'm so happy for both Jed and Deb. Go TILs Go. I can hardly wait to hear about your scans in a few weeks.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
09/2013 colectomy
10/2013 - 3/2014 FOLFOX
04/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
03/2015 enter TIL trial @ NIH
07/01/15 Receive 148E9 cells to target K-ras G12D mutation
08/11/15 Reduction=18%, no new tumors
09/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
01/26/16 46% but one suspicious met
03/24/16 46% but one growing
04/07/16 Lung lobectomy NED for the first time

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LPL
Posts: 105
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: TIL Immunotherapy at NCI

Postby LPL » Tue Mar 21, 2017 4:15 pm

jdepp & DAS43
I hope you two will have fantastic results, just like Sleen :D
You all give so much hope for others !
Wishing you all the best !!! /LPL
DH @65 Emergency colostomy 3/18/16
DX: CC recto-sigmoid junction 4/11
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets:3 Liver resectable
T4aN1bM1a Stage IVa 2/9 Ln
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
Chemo: 4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open resections):
3/18 Colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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