TIL Immunotherapy at NCI

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DAS43
Posts: 38
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Fri Jul 14, 2017 7:57 am

:D. Great news Celine! Can I ask who your new fellow is? I received an email and found out I will have new research nurse when I go back. Kinda sad over that I really loved my nurse she was great!
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

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Sleen
Posts: 295
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Fri Jul 14, 2017 8:05 am

Sent a PM.

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 26 yrs. kids: 21, 18, 15, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Fri Jul 14, 2017 8:14 pm

Sleen wrote:We're back from follow-up #12. All good!
They've decided to schedule the next one for SIX MONTHS out. This is a first for me. We'll see if Dr. Rosenberg lets the order stand (he vetoed it last time it was suggested).

My clinic visit was one of the shortest ever, which is OK by me ;)

Celine


Celine, CONGRATULATIONS on your continued success. I am so 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 - 10 years and counting!

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: TIL Immunotherapy at NCI

Postby pdp497 » Mon Sep 11, 2017 12:54 pm

Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Wed Sep 13, 2017 6:22 pm

pdp497 wrote:Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.


Since you are currently being treated there, can you call or email them directly and see what they say?

Good luck,

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!

User avatar
DH2Sleen
Posts: 65
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Thu Sep 14, 2017 5:40 am

pdp497 wrote:Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.

Here is a link to the study: https://clinicaltrials.gov/show/NCT02757391
They had an original planned start date of Aug 2016. It has been pushed back a couple of times and they updated it last week to Dec 2017. It might be best to ask your doctors if they think this will actually start up this year; if not, you would probably get started faster at NIH.
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

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: TIL Immunotherapy at NCI

Postby pdp497 » Thu Sep 14, 2017 9:46 am

DH2Sleen wrote:
pdp497 wrote:Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.

Here is a link to the study: https://clinicaltrials.gov/show/NCT02757391
They had an original planned start date of Aug 2016. It has been pushed back a couple of times and they updated it last week to Dec 2017. It might be best to ask your doctors if they think this will actually start up this year; if not, you would probably get started faster at NIH.

Thanks for the information. I am actually still on my first line treatment so I won't be eligible for either study for at least several months I am just trying to find the best options and be ready to pursue them. I am sure both trials will be difficult to get in to so I am glad there is more than one. I am probably leaning toward the NIH as a first choice because they have been doing it much longer even though it would increase the travel and they seek to provide more follow up care. The MDA version indicates only 6 months of follow up after completing the protocol, which seems short. After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved? Thanks again for taking the time to respond, I am happy your wife has had such an amazing response and her story has given me hope through these difficult times.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

DAS43
Posts: 38
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Thu Sep 14, 2017 5:27 pm

:D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.
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

jdepp
Posts: 485
Joined: Sun Sep 28, 2008 7:53 pm

Re: TIL Immunotherapy at NCI

Postby jdepp » Thu Sep 14, 2017 8:23 pm

Fabulous news! Keep on keepin' on!
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

User avatar
DH2Sleen
Posts: 65
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Fri Sep 15, 2017 5:23 am

pdp497 wrote: After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved?

Three years ago, when we worked so hard to get into this trial, I would have said that it was our only option... either this trial succeeds or we have no hope. Now, I think there are real options for just about everyone. I still think the TIL trial at NIH is the ultimate solution, but other protocols are working for particular mutational configurations. And, some of the friends we have made participating in this trial have not been successful because it didn’t kill off 100% of their tumors.
But I still recommend this trial, at NIH, for a few reasons. 1) Nobody has more experience, 2) It costs nothing for the patient after the first visit (caregivers may get lodging, but maybe not), 3) NIH has done additional follow-up treatments whenever there was a chance it would get the patients disease-free, 4) No charges ever hit our insurance co-pays or deductibles, 5) If it doesn’t kill off 100% of the disease, you still have all other conventional therapies and most trials to turn to.
I think the key to success with this trial is to do it early. Ironically, you need to be fairly healthy (while mortally ill) to handle the treatment. But to answer your question, it was well worth it for us… life changing.
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

User avatar
DH2Sleen
Posts: 65
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Fri Sep 15, 2017 5:25 am

DAS43 wrote::D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.

Awesome!!!!!! So you are officially a Partial Responder now?
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

User avatar
Sleen
Posts: 295
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Fri Sep 15, 2017 6:06 am

wooHOO, DAS!!! That is fantastic news! I bet you've got the whole Surgery Branch doing cartwheels :)
C O N G R A T U L A T I O N 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 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 26 yrs. kids: 21, 18, 15, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: TIL Immunotherapy at NCI

Postby pdp497 » Fri Sep 15, 2017 1:52 pm

DH2Sleen wrote:
pdp497 wrote: After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved?

Three years ago, when we worked so hard to get into this trial, I would have said that it was our only option... either this trial succeeds or we have no hope. Now, I think there are real options for just about everyone. I still think the TIL trial at NIH is the ultimate solution, but other protocols are working for particular mutational configurations. And, some of the friends we have made participating in this trial have not been successful because it didn’t kill off 100% of their tumors.
But I still recommend this trial, at NIH, for a few reasons. 1) Nobody has more experience, 2) It costs nothing for the patient after the first visit (caregivers may get lodging, but maybe not), 3) NIH has done additional follow-up treatments whenever there was a chance it would get the patients disease-free, 4) No charges ever hit our insurance co-pays or deductibles, 5) If it doesn’t kill off 100% of the disease, you still have all other conventional therapies and most trials to turn to.
I think the key to success with this trial is to do it early. Ironically, you need to be fairly healthy (while mortally ill) to handle the treatment. But to answer your question, it was well worth it for us… life changing.

DH@Sleen:

Thanks for the information. I was just diagnosed in July and am still on my first line treatment so I know I am not yet eligible for the trial but I plan on applying to it as soon as I can while I am still in good health outside of the cancer. On the Clinical Trials website it seems to indicate you only need to have failed one first line treatment but I have seen in other places that you need to have failed on at least 2 treatments first, do you know what the actual criteria is? Also thanks for taking the time to respond going through this process is so difficult and being at the beginning of it it helps to have people willing to give advice and let you know about the process.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

DAS43
Posts: 38
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Fri Sep 15, 2017 3:14 pm

DH2Sleen wrote:
DAS43 wrote::D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.

Awesome!!!!!! So you are officially a Partial Responder now?

Yes I am :D
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

User avatar
Sleen
Posts: 295
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Fri Sep 15, 2017 6:22 pm

pdp497 wrote:On the Clinical Trials website it seems to indicate you only need to have failed one first line treatment but I have seen in other places that you need to have failed on at least 2 treatments first, do you know what the actual criteria is? Also thanks for taking the time to respond going through this process is so difficult and being at the beginning of it it helps to have people willing to give advice and let you know about the process.


Hi pdp!
At the .gov website under "Inclusion Criteria" it says (among other things), "...All patients must be refractory to approved standard systemic therapy. Specifically : Metastatic colorectal patients must have received oxaliplatin or irinotecan."

When I was accepted onto the trial, I had previously only undergone treatment with FOLFOX.

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 26 yrs. kids: 21, 18, 15, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.


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