TIL Immunotherapy at NCI

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jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: TIL Immunotherapy at NCI

Postby jhocno197 » Tue Nov 01, 2016 9:10 pm

DAS43, hope all goes well with the induction!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: TIL Immunotherapy at NCI

Postby ronswife » Wed Nov 02, 2016 11:00 am

I have a question on the TIL trials. How long does it take to actually get into the trials once you apply? Are there any steep fees? A lot of red tape?

I really believe Ron should be in one, since his cancer GREW again after good results on FOLFIRI. They put him on maintenance chemo in the summer and his 10/18 CT scan showed increased growth in his liver and his lung! Now his onc wants to try FOLFOX. Do you think this will do him any good?

For the whole past week that he took NO chemo at all, he is feeling weak and tired every day! Is this a sign of liver failure?

Thanks SO much!!

:x :( :?:
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

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DH2Sleen
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Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Wed Nov 02, 2016 11:54 am

ronswife wrote:I have a question on the TIL trials. How long does it take to actually get into the trials once you apply? Are there any steep fees? A lot of red tape?


I can tell you that the TIL trial at NIH will cost almost nothing for the patient, but travel for caregivers is not reimbursed. Any of the TIL trials will take several months. First step is to send all of your medical records and recent scans. They will be looking for a large (bigger than 1.5cm), easily resectable tumor. We had good results with two taken from the lung, but they can get them from other places as long as the surgery isn’t difficult. If they want to see you, they will invite you for a screening within a couple of weeks (they don’t normally pay travel for this visit). Then schedule surgery a couple weeks later. Then the waiting starts. If everything goes well, about 3 months after surgery, they will call you back for a month of in-patient treatment. The treatment includes a week of chemotherapy, the cell infusion, and a day or two of cytokine infusions, followed by a couple of weeks of waiting for your immune system to recover. After they let you go, they will want you to return every 6 weeks or so to check the shrinkage of the tumors. If everything shrinks and continues shrinking, they will reduce the visits to quarterly after about six months.

Also affecting timing, they require a 4 week chemo wash-out period before surgery and before cell infusion, so you need to consider whether that will be too long off chemo for him.

I think that M.D. Anderson plans a similar trial, but I don’t know anything about criteria, timing, or costs.
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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Sleen
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Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Nov 02, 2016 2:57 pm

ronswife wrote:For the whole past week that he took NO chemo at all, he is feeling weak and tired every day! Is this a sign of liver failure?

There is no way to know w/o testing. Have you looked at his bloodwork? Low hemoglobin (Hg or Hgb on lab reports) would make him feel that way. Reports are usually on an institution's patient portal. This is a question for the medical oncologist.

Regarding timing of events:
For reference, my initial screening visit was March 19, 2015.
Harvest surgery was April 1.
Cell Day was July 1.

A lot of data and some biologicals will be requested prior to an in-person screening visit. Is that what you mean by red tape?

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
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)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: TIL Immunotherapy at NCI

Postby dudette » Thu Nov 03, 2016 11:38 am

Just a quick heads up for patients, who are not based in the US:

I received an email saying that NCI does "off site registration" for overseas patients. However, they require their guinea pigs to remain in the US for 3-4 months after treatment.

Can any of you locals recommend a budget friendly area for flat-sharing? Doesn't have to be in Bethesda but needs access to public transport (anywhere up to 6 hours on bus or train is fine). Don't know how I would make this happen but doesn't hurt doing my research before going through the elaborate screening process.
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

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Sleen
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Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Nov 03, 2016 12:36 pm

dudette wrote:I received an email saying that NCI does "off site registration" for overseas patients. However, they require their guinea pigs to remain in the US for 3-4 months after treatment.


This is great news! Were you asking specifically about the TIL trial? I had different information when it came up a few months ago. At that time, they said that enrolling overseas patients was not possible, due to the nature of the follow-up appointments with this particular trial. It would be wonderful if they've reversed their opinion on this!!!

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
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)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: TIL Immunotherapy at NCI

Postby dudette » Thu Nov 03, 2016 3:46 pm

I asked about whether they know of any researchers in Germany or somewhere other in Europe who are doing TIL "stuff". While they couldn't help me with my question, the research nurse mentioned that they would screen me overseas for the following TIL trial: https://clinicaltrials.gov/ct2/show/NCT01174121?term=10-C-0166&rank=1

That's pretty big news because it never occurred to me that I might be able to participate in a clinical trial in the US. Hopefully it's good news for others on here, too.
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

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Sleen
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Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Nov 03, 2016 4:38 pm

HOLY BEANS!
Thank you for sharing this news. The link you posted is the same one we're talking about on this thread. Not sure if you're aware of that?
Fantastic! Please keep us posted on your screening process.

What country are you in?

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
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)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: TIL Immunotherapy at NCI

Postby dudette » Fri Nov 04, 2016 4:14 pm

I'm in Germany. Apologies for creating confusion by re-posting the link.

Thanks to this thread I became aware of the TIL trial.
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

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Sleen
Posts: 314
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Fri Nov 04, 2016 8:24 pm

dudette wrote:I'm in Germany. Apologies for creating confusion by re-posting the link. Thanks to this thread I became aware of the TIL trial.

I'm so glad that you did post it! Thank you!!!

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
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)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

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Sleen
Posts: 314
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Nov 17, 2016 2:56 am

I am back from follow-up #9. Seems they want to keep scanning me every three months or so.
This set of scans showed that ALL IS WELL, still.

Exciting news this time is that Dr. Rosenberg met with me in the clinic. He informed me that the NEJM will be publishing the story of my case in a few weeks. It was surreal.

I asked my fellow specifically, "How many responders have there been?" and he said, "2 of 11". He said that my case is included in those figures.

More news: The first patient to be treated after the shut down will receive cells very soon! The shut down of the NIH labs this past summer is part of the reason they've only got eleven cases to report. Given the fact that I was told that I was one of "7 or 8" that got treated on cohort 2, they must not have treated more than four patients on cohort 3 so far.

An update is on my blog. See link in sig.

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
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)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Thu Nov 17, 2016 6:04 am

Dearest Celine,
I'm so happy for you, so happy. What other words I could use. Thank you for sharing this with us : ))

(Now I'll go and brag about knowing online "an historic figure in medicine" :P :wink: )
Celebrate with the family!!!!!!!!!
much love

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: TIL Immunotherapy at NCI

Postby Wonderfullymade » Thu Nov 17, 2016 8:57 am

So happy to hear your good news! Exciting to be "published" isn't it!? Thank you for helping find a cure for this nastiness!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

KElizabeth
Posts: 400
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Facebook Username: KElizabeth
Location: Omaha

Re: TIL Immunotherapy at NCI

Postby KElizabeth » Thu Nov 17, 2016 7:50 pm

DH2Sleen wrote:
I think that M.D. Anderson plans a similar trial, but I don’t know anything about criteria, timing, or costs.


I've been lurking following all the posts from this thread, and just first wanted to thank you for keeping us informed on this important trial, and congratulations on your success. I've been hanging on to my application but I'm not ready to apply yet.
I did want to share since I saw you mention other trial locations that I have some information that the Trial could come to University of Nebraska Medical Center in Omaha.
I happened to end up sitting next to a prestigious pancreatic cancer reasarcher, Dr. Hollingsworth on a flight home to omaha about 8 months ago. He had just left Baltimore after meeting with Dr Rosenberg and others about bringing the trial to Omaha. He suggested it would be within 2 years if it went through. It was funny because I had a copy of the time magazine which featured the article about Dr Rosenberg'so trial and was explaining to my son about the trial and my desire to try to get in and Dr Hollingsworth overheard. :D
I'm just very hopeful for something like this to come to the Midwest.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Lee
Posts: 5967
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Thu Nov 17, 2016 8:22 pm

Sleen wrote:I am back from follow-up #9. Seems they want to keep scanning me every three months or so.
This set of scans showed that ALL IS WELL, still.

Exciting news this time is that Dr. Rosenberg met with me in the clinic. He informed me that the NEJM will be publishing the story of my case in a few weeks. It was surreal.

Celine


Happy Dance, Happy News :D . So very happy for you.

Congratulations, keep up the AWESOME job!

Love this thread. Thank you for all the info and the people that you have helped..

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!


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