Were you able to get through?
Celine
TIL Immunotherapy at NCI
Re: TIL Immunotherapy at NCI
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.
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.
Re: TIL Immunotherapy at NCI
The main scientist on my team, Dr. Tran, wrote to say that he thinks he now knows how/why the one tumor progressed despite all the others being killed. (Six of seven tumors were killed by TIL therapy.) Theories prior to my surgery were that the non-responding tumor could have developed a new mutation that my TIL didn't recognize, or that it lost its ability to "express MHC I". Tests soon after surgery revealed that it DID still carry the G12D mutation, and it DID retain its MHC Class I expression. Further analysis ensued.
As my immunotherapy fellow likes to say, "Dr. Tran did a bunch of Science on it", and he discovered that the tumor had evolved in a way that caused it to delete an entire chromosome. Chromosome 6, he said, is where the key genes for the immune system reside. Normal cells have two copies of this chromosome, but the tumor's cells had only one copy. The missing copy was the one that included the HLA C*08:02, which is the one needed in order for my TIL to recognize their target (the G12D mutation).
There is a more detailed explanation on my blog (see sig.), but suffice to say, cancer is REALLY SNEAKY and I'm glad they cut the bastard out.
Follow Up #8 next week. Hoping scans are clear.
News re: the shutdown. They are now authorized to treat one patient per week on the TIL trial.
Celine
As my immunotherapy fellow likes to say, "Dr. Tran did a bunch of Science on it", and he discovered that the tumor had evolved in a way that caused it to delete an entire chromosome. Chromosome 6, he said, is where the key genes for the immune system reside. Normal cells have two copies of this chromosome, but the tumor's cells had only one copy. The missing copy was the one that included the HLA C*08:02, which is the one needed in order for my TIL to recognize their target (the G12D mutation).
There is a more detailed explanation on my blog (see sig.), but suffice to say, cancer is REALLY SNEAKY and I'm glad they cut the bastard out.
Follow Up #8 next week. Hoping scans are clear.
News re: the shutdown. They are now authorized to treat one patient per week on the TIL trial.
Celine
Last edited by Sleen on Thu Aug 04, 2016 11:49 pm, edited 2 times in total.
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.
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.
Re: TIL Immunotherapy at NCI
Sleen wrote:Follow Up #8 next week. Hoping scans are clear.
Celine
Sleen,
Good luck next week. Hope (& praying) it's the best of news
.You and your family will be in my thoughts and prayers,
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 - 16 years and counting!
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 - 16 years and counting!
Re: TIL Immunotherapy at NCI
Good luck with your scans!
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 ???
2/21/17 Folfuri & Avastin
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 ???
2/21/17 Folfuri & Avastin
-
Wonderfullymade
- Posts: 140
- Joined: Tue Jan 12, 2016 4:33 pm
Re: TIL Immunotherapy at NCI
That's great news!
Is this trial still accepting people? I don't know where it's at it but would be interested in seeing if I qualify. Maybe that's what's going on with me...
Wonderfully made
Is this trial still accepting people? I don't know where it's at it but would be interested in seeing if I qualify. Maybe that's what's going on with me...
Wonderfully made
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
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
Re: TIL Immunotherapy at NCI
Yes, they are still recruiting.
See trial link in my sig and read the inclusion / exclusion criteria on the .gov site.
It is being done only at NIH (Bethesda, MD). It is a Phase 2, non-randomized trial.
Celine
See trial link in my sig and read the inclusion / exclusion criteria on the .gov site.
It is being done only at NIH (Bethesda, MD). It is a Phase 2, non-randomized trial.
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.
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.
Re: TIL Immunotherapy at NCI
Had a great visit to NIH earlier this week.
Scans were great--still NED.
Details on my blog (link in sig.). The TIL lab's very own Lab Guru read my humble blog post about the progressing tumor and told me that it was "Surprisingly accurate." I consider it high praise!
I'm not due back there until December.
Celine
Scans were great--still NED.
Details on my blog (link in sig.). The TIL lab's very own Lab Guru read my humble blog post about the progressing tumor and told me that it was "Surprisingly accurate."
I consider it high praise!I'm not due back there until December.
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.
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.
Re: TIL Immunotherapy at NCI
FANTASTIC news Celine! SO happy for you!!
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.
-
Wonderfullymade
- Posts: 140
- Joined: Tue Jan 12, 2016 4:33 pm
Re: TIL Immunotherapy at NCI
That is indeed wonderful news!
I submitted my preliminary paperwork and scans are on there way. I will keep you posted on my progress!
Wonderfullymade
I submitted my preliminary paperwork and scans are on there way. I will keep you posted on my progress!
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
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
Re: TIL Immunotherapy at NCI
Wonderfullymade--that is exciting!
Best wishes to you. I look forward to your update(s)!
Celine
Best wishes to you. I look forward to your update(s)!
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.
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.
Re: TIL Immunotherapy at NCI
Sleen wrote:Had a great visit to NIH earlier this week.
Scans were great--still NED.
Details on my blog (link in sig.). The TIL lab's very own Lab Guru read my humble blog post about the progressing tumor and told me that it was "Surprisingly accurate."
I'm not due back there until December.
Celine
CONGRATULATIONS
Keep up the good work. So very happy for you.
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 - 16 years and counting!
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 - 16 years and counting!
Re: TIL Immunotherapy at NCI
Never posted before and wishing I didn't need to now. I was DX 11/13 went to the Hosp in severe pain. Couldn't have a BM 2 days later surgery for colostomy and DX of stage iv colon cancer. I was 41! What the hell. Matastisized to my liver. Started folfox 1/14, liver resection 3/14, 8/14 finished chemo. Ostomy reversal 12/14. Back to work 3/15. 8/19/16. Found 3 mets to lungs. 3 lobes. Devastated. Scared. Been silently watching this post hoping to never need this info. I have already applied for this trial. Waiting to hear. Celine Do u know if Karin had success? I know its new and their isn't much info, but if it doesn't work can I try other tx? I live in western Maryland and Bethesda is only 3 hrs away so I'm hopeful this will work
Deb
Deb
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
10/16 trial at NIH TIL
9/17 partial responder to TIL protocol
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs
10/16 trial at NIH TIL
9/17 partial responder to TIL protocol
Re: TIL Immunotherapy at NCI
OMG, Deb! You are way too YOUNG to be going through something like this!!
Praying you get into that trial ASAP!!
Praying you get into that trial ASAP!!
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.
Re: TIL Immunotherapy at NCI
Thanks ronswife.
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
10/16 trial at NIH TIL
9/17 partial responder to TIL protocol
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs
10/16 trial at NIH TIL
9/17 partial responder to TIL protocol
Re: TIL Immunotherapy at NCI
DAS43 wrote:Celine Do u know if Karin had success? I know its new and their isn't much info, but if it doesn't work can I try other tx? I live in western Maryland and Bethesda is only 3 hrs away so I'm hopeful this will work
Unfortunately, the TIL treatment did not work for Karin.
Regarding your second question: It depends.
The TIL trial now includes an anti-PD1 antibody (Keytruda). This will exclude patients from some (not all) other trials.
The TIL trial does not exclude candidates for having used a prior cancer immunotherapy.
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.
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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