Got the call yesterday...off to NIH tomorrow! Update - Not accepted

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mackswife
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Location: Atlanta, Ga.

Got the call yesterday...off to NIH tomorrow! Update - Not accepted

Postby mackswife » Tue May 19, 2015 11:16 am

The fine folk at NIH (or NCI) in Bethesda called yesterday, and asked if DH could be in Bethesda, Md. for a full day of evaluation and consultation on Thursday. We were in Florida at the time, helping my mother who is in the hospital with pneumonia. She was in the middle of a move to an assisted living facility when she became ill. Anyway, we had spent the previous 3 days helping coordinate her move and trying to help sort out all the health issues at the hospital (because a diagnosis of pneumonia and Parkinson's requires consults from Neurologists, Pulmonary Specialists, Infectious Disease doctors, Gastroenterologists, Physical Therapists, and Respitory Therapists). It was in the midst of this whirlwind that "THE CALL" finally came! The Rosenberg TIL trial may actually be within reach!

We left mom (bless her heart) in the care of my brother (Bless his heart!), headed back to Atlanta, and made reservations to fly to Bethesda tomorrow. Will not find out if DH has officially been accepted into the TIL trial until next week.

Tired, Hopeful, Excited, Scared.....I'll try to post updates about our experience for those of you who might also be looking into this exciting clinical trial.

Pattie

Update 5/22 - Our experience at NIH (NCI) was amazing. The day of testing and interviews was very long and exhausting...and thorough. A highlight of our trip was getting to meet Karin (lilacbreastedroller) who is doing well half-way through the protocol. It was great to meet a fellow "club member".

Sadly, we received a telephone call from the physicians yesterday telling us that DH was not a candidate for the trial. The tumor they wanted to resect for the protocol was "too close to the kidney, and has probably invaded the kidney." So the surgeon felt it would be unsafe to proceed. So, DH has 2 choices left....more chemo (folfoxiri) or palliative care. DH will make that decision soon, and he'll have my full support. He's grateful to have had the opportunity to explore this trial, but has no interest in "turning over another rock". We're still in the stands, cheering the rest of you on.

Pattie
Last edited by mackswife on Sat May 23, 2015 5:00 am, edited 1 time in total.
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

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

Re: Got the call yesterday...off to NIH tomorrow!

Postby DH2Sleen » Tue May 19, 2015 11:25 am

I'm so sorry to hear that you were not able to proceed in this trial. Glad you were able to say "Hi" to Karin while you were there. These trails really are something of a craps shoot.
Last edited by DH2Sleen on Mon May 25, 2015 9:04 am, edited 1 time in total.
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"

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: Got the call yesterday...off to NIH tomorrow!

Postby Stanfordmom » Tue May 19, 2015 11:32 am

I am so happy for your both. Hope your DH gets in the trial!
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Got the call yesterday...off to NIH tomorrow!

Postby skypup » Tue May 19, 2015 11:46 am

Good luck and thanks for letting us know. Do they pay travel expenses?

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: Got the call yesterday...off to NIH tomorrow!

Postby janderson » Tue May 19, 2015 12:53 pm

That is great news. You will at least have your foot in the door now.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Got the call yesterday...off to NIH tomorrow!

Postby KWT » Tue May 19, 2015 2:32 pm

That super news. Good luck.

Theresa, they don't pay until you're officially accepted into the trial.

testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: Got the call yesterday...off to NIH tomorrow!

Postby testing765 » Tue May 19, 2015 2:39 pm

Have a safe trip and I hope your DH is accepted into the trial and has a great response to the treatment.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

NY Metsrule
Posts: 14
Joined: Sun Jan 11, 2015 7:20 pm

Re: Got the call yesterday...off to NIH tomorrow!

Postby NY Metsrule » Tue May 19, 2015 2:49 pm

Great news! Good luck.
Dx 10/31/14, Age 45/ Stage IV
Sigmoid, with 4 mets liver- CEA 69.8
12/5/14 adrenal gland biopsy + for mets
12/16/14 Folfox6 started- 4/16/15
4/15 portal vein embolization
5/20/15 surgery: sigmoid colon resection,right lobe liver resection,left adrenal gland excision, peritoneal mets
5 more chemos, no oxi, just 5-FU
10/19/2015 Ct scan clear, CEA 1.8

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lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: Got the call yesterday...off to NIH tomorrow!

Postby lilacbreastedroller » Tue May 19, 2015 2:52 pm

Fantastic news! Come see me - I'll PM you with my room number and details. You can check out the layout of the room and figure out what to bring when your DH is an inpatient

Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

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

Re: Got the call yesterday...off to NIH tomorrow!

Postby Ceebo » Tue May 19, 2015 4:37 pm

We still haven't heard anything yet. It's a little frustrating and stressful. When did you start the process with NIH? I really think a part of our problem is the research nurse we are working with. I'll give her a call tomorrow and see where we are at in the process.

I just found out today that my husband didn't qualify for a clinical trial at the UPMC for patients with peritoneal mets, due to his liver mets. He would have gone through the HIPEC procedure followed by a vaccine trial. We have prayed God will open the doors he wants us to go through and that one definitely was closed.

Glad you are on your way soon to NIH. Wishing you the very best!!

--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

mackswife
Posts: 263
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: Got the call yesterday...off to NIH tomorrow!

Postby mackswife » Tue May 19, 2015 7:10 pm

Thank you all for your encouraging words. To Cindie - I feel your pain! We were also feeling very discouraged and a little frustrated as communication with the research nurse just seemed to stop a few weeks ago. Then, yesterday, a different nurse (Marie) called with the news that we were invited up for the consultation. I don't know exactly what happened but I hope you hear soon. We started the process in April....sent the blood work in on April 9, and other paper work in on April 23. We've been concerned because we know Mack's cancer has been progressing pretty rapidly lately. He's been off chemo for 2 months. I'll keep you posted if I learn anything about the process that might help. We're going to look up Karin on Thursday...she "sounds" good!
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

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jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: Got the call yesterday...off to NIH tomorrow!

Postby jgall » Wed May 20, 2015 7:05 am

Good news! I'm so happy for you.

We tried to get my DH into it, but because of his biliary stent he was disqualified. I guess since they wipe out the immune system, having a foreign body like that in htere increases the infection risk too much.

Wishing you all the best of luck for this!
Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

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

Re: Got the call yesterday...off to NIH tomorrow!

Postby Sleen » Wed May 20, 2015 3:34 pm

Great news, Pattie!
I really hope that your hubby gets in. Gotta admit, I'm jealous that you get to visit Karin :)

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 33 yrs. kids: 27, 24, 20, 15, 13
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Got the call yesterday...off to NIH tomorrow!

Postby DarknessEmbraced » Wed May 20, 2015 3:57 pm

Congratulations! Very happy for you! Good luck!!! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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Sleen
Posts: 318
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: Got the call yesterday...off to NIH tomorrow! Update - Not accepted

Postby Sleen » Sun May 24, 2015 10:40 pm

mackswife wrote:Sadly, we received a telephone call from the physicians yesterday telling us that DH was not a candidate for the trial.


Oh, I am truly sorry. It can be devastating when an option is pulled. Best wishes to Mack as he discerns the next step. This is a horrible disease :(

Please keep us updated.

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 33 yrs. kids: 27, 24, 20, 15, 13
SE Michigan home schooler, unemployed mechanical engineer, and programmer.


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