TIL Immunotherapy at NCI

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mackswife
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Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: TIL Immunotherapy at NCI

Postby mackswife » Fri Aug 14, 2015 12:11 am

Celine - I'm thrilled for you and your family. What wonderful news! I haven't seen a post from Karin (lilacbreastedroller) in awhile....hoping to hear a positive report from her in the near future. Pattie
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: TIL Immunotherapy at NCI

Postby JENNJ » Sun Aug 23, 2015 8:55 pm

Thank you SOOOO much for sharing all this information and your journey so far. I am reaching out to NCI tomorrow to get the ball rolling for my Dad- his oncologist seems excited about this trial for him.
Katy

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Sleen
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Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Mon Aug 24, 2015 8:43 am

Good luck to your Dad!

I'm glad to know that his oncologist is enthusiastic about the trial, because you'll be needing his/her support to get the required information to NIH.

Please keep me posted on his progress within the screening process. If I can help in any way, please let me know. If nothing else, I will be cheering from the sidelines!

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 2014 confirmed 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: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: TIL Immunotherapy at NCI

Postby JENNJ » Mon Aug 24, 2015 1:43 pm

Thank you for your support Celine!
Just filled out the screening questionnaire. My Dads CT scan is Wednesday this week so as soon as I can get my hands on the report I will forward that to them as well. Do you happen to know if BRAF mutations exclude a patient? Or does number of distant sites matter? My Dad is in excellent health but has mets to the lung liver and LNs.
Thank you!
Katy

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Sleen
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Re: TIL Immunotherapy at NCI

Postby Sleen » Mon Aug 24, 2015 5:09 pm

ANY mutation is acceptable. The trial will accept other cancers too, including all G.I. cancers, breast cancer--basically any cancer that results in solid tumors.

I can't think of a reason why distant sites would disqualify him, with the exception of mets to the brain (more than 3 is a disqualifier).

When he gets the CT, be sure to ask for a disk with the images. They should be able to hand you a disk soon after the scan is finished. (At my local hospital I can walk out with a disk 30 min. after the scan.) If/when he passes the initial screening, NIH will want to see the images for themselves (and also the report). Your Dad will probably have to sign for this, so ask at check-in while he's present.

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 2014 confirmed 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: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: TIL Immunotherapy at NCI

Postby JENNJ » Mon Aug 24, 2015 6:01 pm

Thank you Celine. I'm so anxious to get the ball rolling I just pray he makes it all the way to treatment. Your help is priceless.
Katy

pfCml73183
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Facebook Username: Celeste Marie Comeau
Location: FL

Re: TIL Immunotherapy at NCI

Postby pfCml73183 » Mon Aug 24, 2015 6:28 pm

I am rooting for you girls. This is what makes this forum so precious : people helping each other reach their goals.
Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: TIL Immunotherapy at NCI

Postby JENNJ » Tue Aug 25, 2015 8:52 am

Celine,
I am so excited about your progress. Have there been other colon cancer patients that have done the trial and had it fail?
Katy

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: TIL Immunotherapy at NCI

Postby JENNJ » Tue Aug 25, 2015 3:07 pm

Just heard from NIH. They want my Dads CT scan overnight-ed-i should have the disk Thursday which means hopefully they will get it before the weekend. They said they need to see at least 10% growth, even stable disease will not qualify. The ONLY worry I have about the trial is the 12 weeks with no treatment at all. The 4 weeks until the biopsy shouldn't be a problem but the additional 8 weeks for the cells to grow is the issue. 3 months is a long time. We know that his cancer is fast growing per Champions so I don't know what to think about that. I will update as I hear.
Thank you
Katy

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: TIL Immunotherapy at NCI

Postby jortego128 » Tue Aug 25, 2015 3:27 pm

So happy that this therapy appears to be working for you! You have done an incredible job with the updates, they are very much appreciated! Will pray for your healing tonight and will continue from now on!
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

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DH2Sleen
Posts: 81
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Tue Aug 25, 2015 8:45 pm

JENNJ wrote: The ONLY worry I have about the trial is the 12 weeks with no treatment at all. The 4 weeks until the biopsy shouldn't be a problem but the additional 8 weeks for the cells to grow is the issue. 3 months is a long time.


Did they tell you he could not have chemo between the tumor removal surgery and the cell infusion? I don't think they require that. We talked at some length with the attending Dr. about whether Sleen should take capacitabine between visits and we decided not to, but it was up to Sleen. I think that they will let his onc put him back on chemo if he needs to be. Be sure to talk about it with them (both NIH and onc).
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
9/2013 colectomy
10/2013 - 3/2014 FOLFOX
4/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
3/2015 enter TIL trial @ NIH
7/1/15 Receive 148E9 cells to target K-ras G12D mutation
8/11/15 Reduction=18%, no new tumors
9/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
1/26/16 46% but one suspicious met
3/24/16 46% but one growing
4/7/16 Lung lobectomy NED for the first time
3/3/20 Still NED "cured"

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: TIL Immunotherapy at NCI

Postby JENNJ » Tue Aug 25, 2015 9:06 pm

DH2Sleen wrote:
JENNJ wrote: The ONLY worry I have about the trial is the 12 weeks with no treatment at all. The 4 weeks until the biopsy shouldn't be a problem but the additional 8 weeks for the cells to grow is the issue. 3 months is a long time.


Did they tell you he could not have chemo between the tumor removal surgery and the cell infusion? I don't think they require that. We talked at some length with the attending Dr. about whether Sleen should take capacitabine between visits and we decided not to, but it was up to Sleen. I think that they will let his onc put him back on chemo if he needs to be. Be sure to talk about it with them (both NIH and onc).

Thank you! I spoke to a Linda Williams who I believe is a screening nurse and she told me that no chemo was allowed at all during the 12 week period. I'm glad you told me because even the possibility of being able to take something will direct us whether to pursue the trial. I'll see what they say after they see his scans.
Thank you again for all your help!!
Katy

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Sleen
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Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Aug 26, 2015 6:19 am

JENNJ wrote:...she told me that no chemo was allowed at all during the 12 week period


After they gather all of your Dad's medical information, if they determine that he is a potential candidate for the trial, they will invite him to go to NIH to have more scans, and to meet two of the doctors. During this in-person screening, you will be able to ask questions, and the docs will explain in detail what the trial involves. You'll see an immunotherapy fellow first, and then later one of the attending doctors will join the discussion.

It is possible that they have changed the protocol, however, I advise that you don't make any decision one way or the other until you meet in person with the doctors at NIH. In my case, the protocol was that the patient DID continue chemo during the interval between surgery and cell-infusion--but once we met in person, they made an exception based on my individual case.

Once you meet with the doctors, the initial screening criteria might go out the window, is what I'm trying (poorly!) to say.

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 2014 confirmed 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: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

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Sleen
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Aug 26, 2015 9:18 pm

For those following this thread, I want to make sure that these two points are clarified. There seems to be some miscommunication going on between callers and the screening nurse. I contacted my NIH doc this morning to ask if the inclusion/exclusion criteria for the trial had changed. He said that it had not.

JENNJ wrote:They said they need to see at least 10% growth, even stable disease will not qualify.

My doc offered the following: We treat people who are progressing on standard therapies. If a patient is having a good response to standard therapy then we cannot and will not ask her to stop effective standard therapy to try our experimental therapy (if a patient is having a good response to standard therapy, then she would not call us because she does not need us).


JENNJ wrote:I spoke to a Linda Williams who I believe is a screening nurse and she told me that no chemo was allowed at all during the 12 week period.

The patient must be off therapy for 4 weeks prior to the tumor-harvesting surgery, however, if they wish to resume therapy after surgery, that is their choice.

I wrote this post, shortly after I completed the TIL-trial, which may be helpful.

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 2014 confirmed 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: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: TIL Immunotherapy at NCI

Postby JENNJ » Thu Sep 03, 2015 10:54 am

Well they have the scan and the report- anxiously awaiting to hear their preliminary decision...
:shock:
Katy


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