TIL Immunotherapy at NCI

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bobhuang1
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Joined: Sat Apr 08, 2017 11:34 pm
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Re: TIL Immunotherapy at NCI

Postby bobhuang1 » Sun Apr 09, 2017 8:56 am

Jacques wrote:Is this the trial that you mentioned? https://www.clinicaltrials.gov/ct2/show/study/NCT01174121?show_desc=Y#desc


Yes! That's exactly the trial that we applied. Thanks!

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DH2Sleen
Posts: 60
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Wed Apr 12, 2017 6:35 am

bobhuang1 wrote:We applied to this clinical trial by Dr. Rosenberg and we will fly down to Bethesda next week for a "final" screening. My question is, what kind of experience others have during this screening? Any details? And what to expect after the screening in terms of timeline? What can I do as a caretaker to make the whole thing less painful/stressful for my wife?


I'm sorry it took three days to reply to this request; We just got back from NIH last night. Celine is now officially one year NED. To answer your question, the best place I know of to go is Sleen's blog: cancerriot.blogspot.com . But if you have been following this thread, I suppose you've already seen that. Do you have a specific question that the blog doesn't address?

In general, the timing drags slowly:
screening - schedule surgery one to two weeks later
surgery - wait for cells to grow, sequence, test, grow some more, test again, schedule treatment about 12 weeks later
Treatment - two days of scans and bloodwork, seven days of chemo, cell infusion, three days of IL2, two to three weeks of recovery, all inpatient.
Followup - scans every four to six weeks for six to twelve months, then quarterly or so.
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 Apr 12, 2017 1:23 pm

bobhuang1 wrote:Hello, I found this thread via a Google search and just registered. I have been taking care my wife ever since she was diagnosed with colon cancer on Christmas 2015. Unfortunately after 12 sessions of Folfox and 4 cycles of FOLFIRI+Avastin, the illness still progressed. We applied to this clinical trial by Dr. Rosenberg and we will fly down to Bethesda next week for a "final" screening. My question is, what kind of experience others have during this screening? Any details? And what to expect after the screening in terms of timeline? What can I do as a caretaker to make the whole thing less painful/stressful for my wife? Thanks much!

Bob


Hi Bob,

The initial screening will include blood work, EKG, CT scans, and potentially an MRI. There may be other tests, too. The next day, she'll meet an immunotherapy fellow (this is typically a surgical resident currently on fellowship with the NIH). After that, she'll meet with an attending physician. This person reports directly to Dr. Rosenberg. The attending physician will probably repeat a lot of what the fellow said, but it's good to hear it a second time. They'll talk about what the next steps will be, if the screening tests all come out favorable to eventual TIL therapy.

My screening visit happened on March 19, 2015. I blogged about each visit. Check out the link to my blog, cancerRiot in the signature of this post for many more details.

I wish your wife THE BEST. I hope that you're both amazed by the care she will receive at NIH. Please let me know if I can answer any other questions.

Celine (aka Sleen)
my blog: Cancer Riot

12 mo. f/u: NED!
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, 14, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

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Sleen
Posts: 286
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Location: Detroit
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Re: TIL Immunotherapy at NCI

Postby Sleen » Wed Apr 12, 2017 1:39 pm

Hello!

I am happy to report that follow-up #11 happened earlier this week and there is still no sign of cancer! It has been just over a year since I was declared NED after the lung lobectomy.

I have to chase down a kidney stone or two before I return for my next follow-up. My labs were a bit off this time, and the NIH docs think it is related to stones. I will see a local urologist soon to hopefully sort all of that out. My energy is abysmal, but my spirits are soaring :)

Holding lots of hope for our friends here who are in various stages of this trial!

Celine
my blog: Cancer Riot

12 mo. f/u: NED!
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, 14, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

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Maia
Posts: 2331
Joined: Fri Aug 24, 2012 8:00 am

Re: TIL Immunotherapy at NCI

Postby Maia » Wed Apr 12, 2017 2:59 pm

Celine!!!!!!!! So happy to hear!!!! xoxoxoxo

bobhuang1 , if you read ALL the pages of this thread and, as DH2Sleen has said, the blog that Celine has written about all her experience, http://cancerriot.blogspot.com, you will know almost exactly what to expect :)

Cheering big time for all those in this trial!

Lee
Posts: 4829
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Wed Apr 12, 2017 5:44 pm

DH2Sleen wrote:. . . Celine is now officially one year NED. . .


That is so totally AWESOME :D

Congratulations on your success and may you ALWAYS reside in NEDville.

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!

DAS43
Posts: 31
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Fri Apr 14, 2017 6:42 am

Celine great news! Very happy for you
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

DAS43
Posts: 31
Joined: Thu Aug 18, 2016 8:10 pm

Re: TIL Immunotherapy at NCI

Postby DAS43 » Thu Apr 20, 2017 12:10 pm

At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :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

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DH2Sleen
Posts: 60
Joined: Thu Jan 29, 2015 10:10 am

Re: TIL Immunotherapy at NCI

Postby DH2Sleen » Thu Apr 20, 2017 1:20 pm

DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D

That is great news in my opinion. The scans I've seen have shown this fuzzy aura around the tumors that shrink from this process. I hope you are feeling well and the tumors go away completely.
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: 286
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: TIL Immunotherapy at NCI

Postby Sleen » Thu Apr 20, 2017 5:47 pm

DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D


Sounds like great news!!! :D

Celine
my blog: Cancer Riot

12 mo. f/u: NED!
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, 14, 10, 8
SE Michigan home schooler, mechanical engineer, and programmer.

Lee
Posts: 4829
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Thu Apr 20, 2017 8:28 pm

DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D


So totally AWESOME, congratulations,

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!

bitchslapped
Posts: 1246
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: TIL Immunotherapy at NCI

Postby bitchslapped » Sun Apr 23, 2017 9:33 pm

Stopping by to congratulate all who are in this trial & thanks for the continued followups here.
A special shout out to Celine w/such wonderful news!

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

andy21
Posts: 375
Joined: Tue Jun 26, 2012 4:07 pm
Location: N California

Re: TIL Immunotherapy at NCI

Postby andy21 » Tue Apr 25, 2017 1:45 pm

Congrats to Celine.
1st case of NED using immunotherapy in Colon Cancer, hoping for many more success stories now.
I believe targeted immunotherapy is the solution which will be beneficial to many patients.
Caregiver: To 67 Yr father
diag. Stage IV, 5/12, liver mets
6 cycles Xelox/Avastin, Start 06/12
Stage 1 of Two Stage Resection Surgery in Dec, 12. 2nd line fails.
T Cell Trial May-Jul, 2013
Becomes a Heavenly Angel in August, 2013

Lee
Posts: 4829
Joined: Sun Apr 16, 2006 4:09 pm

Re: TIL Immunotherapy at NCI

Postby Lee » Thu Apr 27, 2017 10:28 am

DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D


Sounds like good news to me too. Congratulations,

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!

jdepp
Posts: 479
Joined: Sun Sep 28, 2008 7:53 pm

Re: TIL Immunotherapy at NCI

Postby jdepp » Tue May 23, 2017 8:52 pm

I'm on my way back from Bethesda after an NIH TIL trial follow up. The first scan wasn't very good, so I expected to be dropped from the trial today, but the second scan was mixed: some lesions slightly larger, some slightly smaller, so I may be getting some benefit after all. I'm scheduled to rinse & repeat the scan in a month. Wishing DAS43 & all others the very best. /jdepp
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


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