TIL Immunotherapy at NCI

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Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: TIL Immunotherapy at NCI

Postby Ceebo » Sat Dec 26, 2015 7:17 am

So glad to hear you are doing so well!! Wonderful news--enjoy the holidays with your family!! --Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Re: TIL Immunotherapy at NCI

Postby Cfbiff » Sat Jan 23, 2016 6:33 pm

Just submitted blood work and tumor sample for testing to see if I would be a candidate. Looking forward to reading great results for you in Jan!
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

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Sleen
Posts: 319
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Sat Jan 23, 2016 8:08 pm

Cfbiff wrote:Just submitted blood work and tumor sample for testing to see if I would be a candidate. Looking forward to reading great results for you in Jan!


Good Luck! Please keep us posted.

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 34 yrs. kids: 28, 25, 21, 16, 14
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Re: TIL Immunotherapy at NCI

Postby Cfbiff » Sat Jan 23, 2016 9:04 pm

Celine, thanks for the note. It won't let me respond through private message. No we don't know each other. We are interested in anything that will give us a chance. I'm stage IV with liver mets...so far I'm responding to tho folfox, but know from reading these boards that doesn't last. So we are trying to apply for any hope we can find as our docs approach is to treat with chemo and just ride it out until death. My life is worth more than that.
They expressed surprise that I would be contacting them so early, but were thankful as we could get much of the screening out of the way.
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

User avatar
Sleen
Posts: 319
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Sun Jan 24, 2016 4:39 pm

Cfbiff wrote:My life is worth more than that.

Absolutely!

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 34 yrs. kids: 28, 25, 21, 16, 14
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

User avatar
Sleen
Posts: 319
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Tue Jan 26, 2016 7:52 pm

Happy Day!

My CT showed 46% shrinkage in the (four) target tumors since treatment began (July 2015). I'm officially a "partial responder" to the trial. Still hoping to get to "complete response"--the attending told me today "all we can do is wait".

I didn't realize how stressed I was until today's visits were finished. Time to hibernate ;)

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 34 yrs. kids: 28, 25, 21, 16, 14
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

Lund5505
Posts: 69
Joined: Tue Jul 08, 2014 1:37 am

Re: TIL Immunotherapy at NCI

Postby Lund5505 » Tue Jan 26, 2016 8:37 pm

That is such exciting news. So hoping you get to complete. I have been watching your progress with great enthusiasm. You are so strong and brave you have all my respect. After seeing your experience I am beginning the process of applying for this trial and a couple of others as well.
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Re: TIL Immunotherapy at NCI

Postby Cfbiff » Tue Jan 26, 2016 9:20 pm

Fabulous encouraging news.....6 months out from treatment and progress accelerating......so cool. Happy for you!
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: TIL Immunotherapy at NCI

Postby midlifemom » Tue Jan 26, 2016 9:47 pm

Congrats you "partial responder" :lol:
Thanks for being part of this trial and for keeping us in the loop.
Enjoy your hibernation.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: TIL Immunotherapy at NCI

Postby lpas » Tue Jan 26, 2016 9:51 pm

Woohoo!! That's the kind of news I love to hear!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: TIL Immunotherapy at NCI

Postby lpas » Wed Jan 27, 2016 3:50 pm

Sleen,

I've been thinking about your post and was meaning to ask if you've heard anything from the doctors about how other trial patients are doing? Just curious if your success is considered somewhat of an anomaly, or if other trial participants have been seeing similar responses. Do you know of any others who are colorectal?

Also--from your blog posts, it sounds as though yours is one of the only cases where the KRAS mutation has been targeted, which surprises me a little. Is that correct? Do you have any idea if they've seen promising results with any of the other more common mutations as of yet (e.g. APC, p53, BRAF, SMAD4, PIK3CA, HER2/ERBB2, etc.)?

Thanks so much for all that you've contributed on this subject. It really is fascinating.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

User avatar
Sleen
Posts: 319
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Jan 27, 2016 10:28 pm

lpas wrote:...it sounds as though yours is one of the only cases where the KRAS mutation has been targeted...

So far, my case is the first and only that targeted a known driver-mutation.

lpas wrote:...how other trial patients are doing?

I have heard from a couple of patients. The doctors speak only in general terms. There have been 2 responders so far, however, they have changed the protocol recently. Patients now will get pembrolizumab in addition to TIL. This latest change to the treatment is too new at the moment to determine whether it will improve outcomes, but the docs are hopeful that it will.

lpas wrote:Do you know of any others who are colorectal?

Yes! I will let them tell their own stories. I met two of them at my last follow-up. I'm excited for them both!!! It will be a few months before their outcomes are known.

lpas wrote:Do you have any idea if they've seen promising results with any of the other more common mutations as of yet
The other responder had TIL that reacted against the ERBB2IP mutation.

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 34 yrs. kids: 28, 25, 21, 16, 14
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: TIL Immunotherapy at NCI

Postby lpas » Thu Jan 28, 2016 10:28 am

Sleen wrote:
lpas wrote:...it sounds as though yours is one of the only cases where the KRAS mutation has been targeted...

So far, my case is the first and only that targeted a known driver-mutation.

lpas wrote:...how other trial patients are doing?

I have heard from a couple of patients. The doctors speak only in general terms. There have been 2 responders so far, however, they have changed the protocol recently. Patients now will get pembrolizumab in addition to TIL. This latest change to the treatment is too new at the moment to determine whether it will improve outcomes, but the docs are hopeful that it will.

lpas wrote:Do you know of any others who are colorectal?

Yes! I will let them tell their own stories. I met two of them at my last follow-up. I'm excited for them both!!! It will be a few months before their outcomes are known.

lpas wrote:Do you have any idea if they've seen promising results with any of the other more common mutations as of yet
The other responder had TIL that reacted against the ERBB2IP mutation.

Celine


Very interesting. Thanks so much!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Re: TIL Immunotherapy at NCI

Postby Cfbiff » Sat Mar 19, 2016 10:14 am

Any updates?
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

User avatar
Sleen
Posts: 319
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Sat Mar 19, 2016 12:37 pm

Not yet. Next follow-up visit is coming up at the end of the week.

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 34 yrs. kids: 28, 25, 21, 16, 14
SE Michigan home schooler, unemployed mechanical engineer, and programmer.


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