Trying Keytruda Off-Label (MSS with a Twist)

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Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby Jack&KatiesMommy » Mon May 14, 2018 4:04 pm

Bschreibs
I am being treated by Dr. Kemeny at Memorial Sloan Kettering in NYC and by Dr. VanDeusen at the James Cancer Hopsital in Ohio locally. I am getting the off-label Keytruda through the James Cancer Center.
Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection!
8/13; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

anitaw
Posts: 35
Joined: Wed Jan 16, 2013 9:06 pm

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby anitaw » Tue May 15, 2018 9:51 pm

Cynthia,
So sorry you are dealing with new mets. Thank you for posting this information. You are always an inspiration to me.
Anita
DX 2/12 Stage IV CC, mets to liver
3/12 - 12/12 Folfox + Avastin
2/13 - 5/13 Folfuri + Vectibix
HAI Pump - 6/13
2 stg liver res - 11/13 & 4/14
Clear scans: 5/14, 8/14, 9/14
1/15 new met in liver, ablated 6/15
11/15 - new met in liver, surgery 1/16, start Folfuri again
2/16 Scan: NED! Every day is a gift. 6/16 new mets, 2 lymph nodes
3/18 Lymph nodes resection, NED, Folfox again

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Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby Jack&KatiesMommy » Mon May 28, 2018 8:36 pm

UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection!
8/13; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

henry123
Posts: 136
Joined: Sun Oct 08, 2017 3:25 am

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby henry123 » Tue May 29, 2018 12:21 am

Jack&KatiesMommy wrote:UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."


I think it can take upto 12 weeks before body starts responding even then there may be pseudo progression.
3 weeks is definitely too short a time to determine response.
Hang in there and visualise magic happening in your body as your new trained immune system destroys the bad cells.
Best of luck.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

lpas
Posts: 1007
Joined: Wed Nov 19, 2014 11:11 pm

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby lpas » Tue May 29, 2018 2:37 pm

You're in my thoughts, Cynthia. Keeping fingers, toes and everything else crossed that a good response is still coming.
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 & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2, 2.4, 2.1
Mom to a 4 & 6yo

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juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby juliej » Tue May 29, 2018 4:35 pm

Jack&KatiesMommy wrote:UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."

Agree with other poster that 3 weeks is too short to know if it's working or not. I've known patients who had actual tumor growth :shock: for a few cycles before it kicked it. Give it time. Are you feeling well otherwise?

Sending prayers and good thoughts your way!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

stu
Posts: 851
Joined: Sat Aug 17, 2013 5:46 pm

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby stu » Tue May 29, 2018 5:13 pm

Hi ,
I know absolutely nothing about it but holding out for it to work ,
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby Shana » Tue May 29, 2018 11:53 pm

Keeping good thoughts for you!

Hoping you see some promising results soon!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

some808guy
Posts: 10
Joined: Thu Oct 01, 2015 2:38 am

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby some808guy » Sat Jun 02, 2018 10:09 pm

Jack&KatiesMommy wrote:UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."


Actually, CEA jump was a good sign for me when I first took keytruda. A CEA flare could mean that all those cancer cells are dying.

It leveled off after the second dose and scans did show it was working after that. So elevated CEA could mean it is working. Stay positive!

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Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby Jack&KatiesMommy » Fri Jun 08, 2018 6:57 am

UPDATE: two weeks after my second treatment of Keytruda (as an MSS patient with a moderate mutation burden) my CEA has gone from 60.1 down to 39.5!
Last edited by Jack&KatiesMommy on Mon Jun 25, 2018 11:58 pm, edited 2 times in total.
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection!
8/13; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

User avatar
LPL
Posts: 410
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby LPL » Fri Jun 08, 2018 7:05 am

Jack&KatiesMommy wrote:UPDATE: two weeks after my second treatment of a Keytruda (as an MSS patientbwith a moderate mutation burden) my CEA has gone from 60.5 down to 39.5!

Wonderful news :)
Last edited by LPL on Fri Jun 08, 2018 8:04 am, edited 1 time in total.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

stu
Posts: 851
Joined: Sat Aug 17, 2013 5:46 pm

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby stu » Fri Jun 08, 2018 7:55 am

Excellent news . Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby Robino1 » Fri Jun 08, 2018 8:32 am

Yay! Keep that number going D o w n ! :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

mariane
Posts: 624
Joined: Sun Sep 13, 2015 6:16 pm

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby mariane » Fri Jun 08, 2018 2:01 pm

Wonderful!!! I keep my fingers crossed! :)
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

aja1121
Posts: 213
Joined: Sat Jun 28, 2014 5:12 pm

Re: Trying Keytruda Off-Label (MSS with a Twist)

Postby aja1121 » Fri Jun 08, 2018 2:56 pm

So happy to see this update!
DH dx Stage 3B rectal ca 05/23/14 (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice


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