Trying Keytruda Off-Label (MSS with a Twist)

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Jack&KatiesMommy
Posts: 507
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Trying Keytruda Off-Label (MSS with a Twist)

Postby Jack&KatiesMommy » Mon Apr 30, 2018 3:54 pm

Hi Everyone:
I just wanted to start a thread to let you know what I am doing in the event it can help someone else.

You can look at my signature for my history...but more recently, in Mayl 2017, after my CEA went up and two lymph nodes showed up on the PET scan I had surgery to remove the lymph nodes (in the hilar area of my left lung) as well as the lower lobe of my left lung (since they had to remove the hilar the lobe had to come out as well.)

All was good until my CEA began to creep up beginning in August 2017. Nothing showed on CT scans. Had PET in January (there were some questionable spots buth nothing definitive) then in March 2018 a repeat PET showed that there were 3 small lymph nodes that were metastatic in the vicinity of the lymph nodes removed in May.

This time I started on chemo again (Irinotecan and Xeloda)....after 8 weeks, my CEA went up a little and two of the nodes got brighter on the PET. Irinotecan may have been keeping the mets somewhat stable but it wasn't working as it should.

HERE IS THE INTERESTING PART: My local oncologist ordered Foundation One Testing on the tumor that was removed in May 2107 (we knew that I was MSS with KRAS mutation...but he didn't know if I had any other mutations that may make other forms of chemo useful. ) When the report came back he was kind of excited because my tumor showed 11 different mutations. (Intermediate Mutation Burden). Apparently, there is some thought that the higher number of mutations in a tumor (which is often Highly Mutated in MSI tumors) allows the immunotherapy to work....even in MSS tumors (most of which have low mutation numbers).

So, my oncologist has gotten approval to use Keytruda off label with the hope that my cancer (being intermediately mutated) will respond. The chances may not be great...but he (and I) are excited and hopeful. I start on May 3rd (this Thursday.)

I will keep you all posted.
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
Lymph nodes all normal via CT scan

stu
Posts: 759
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Mon Apr 30, 2018 5:07 pm

Hi ,
Just want to wish you all the best . Your oncologist sounds good! Very interesting findings and I hope it does the job for you .
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

henry123
Posts: 120
Joined: Sun Oct 08, 2017 3:25 am

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

Postby henry123 » Tue May 01, 2018 2:16 am

Best wishes Cynthia.
May the drug do its magic and destroy all the tumors.
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

NHMike
Posts: 1558
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 01, 2018 12:18 pm

Do you have a list of the mutations? I'm just curious here - I've never run into someone with that many.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

mariane
Posts: 620
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Tue May 01, 2018 1:58 pm

Cynthia,
I wish you the best response ever!!
I remember how you reached out to me when I started my cancer story. Thank you!❤
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!

debb
Posts: 161
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

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

Postby debb » Thu May 03, 2018 9:10 pm

This is so interesting! I wish you the best response with Keytruda!!!
I've read many of your posts and I think you are so inspiring!! I think we joined this forum around the same time, so I love reading about your journey. Keep us posted on your progress. I think you are going to kick ASS!!!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin

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

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

Postby some808guy » Sat May 05, 2018 9:02 pm

NHMike wrote:Do you have a list of the mutations? I'm just curious here - I've never run into someone with that many.


Actually I have about 30 pages worth of mutations on mine from my report.

User avatar
Jack&KatiesMommy
Posts: 507
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 07, 2018 9:10 am

The mutations identified in my cancer are:

KRAS G12A
AURKA amplification
APC E1379
ARFRP1 amplification
BCL2L1 ampliification - equivical
FANCG E105
GABRAG K173T
GNAS amplification
SRC amplification
TOP1 amplification
TP53 R172H
ZBF217 amplification

Microsatellite stable
Tumor Burden TMB Intermediate 12 Muts/Mb

Disease-relevant Genese with NO reportable alterations identified:

BRAF
NRAS
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
Lymph nodes all normal via CT scan

NHMike
Posts: 1558
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon May 07, 2018 10:04 am

Jack&KatiesMommy wrote:The mutations identified in my cancer are:

KRAS G12A
AURKA amplification
APC E1379
ARFRP1 amplification
BCL2L1 ampliification - equivical
FANCG E105
GABRAG K173T
GNAS amplification
SRC amplification
TOP1 amplification
TP53 R172H
ZBF217 amplification

Microsatellite stable
Tumor Burden TMB Intermediate 12 Muts/Mb

Disease-relevant Genese with NO reportable alterations identified:

BRAF
NRAS


Thanks. That's quite a bit and most I've never seen before.

They only found one mutation in mine that are known and two others that haven't been classified yet.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

orlar
Posts: 61
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

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

Postby orlar » Mon May 07, 2018 10:08 am

I hope Keytruda does the trick! I've noticed several people have been going off label (other forums) and having success. Good luck and keep us posted!
56yo male DX 5/17, Right Hemi colectomy 6/17
mod diff adenocarcinoma 6x4x1cm
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 CT=liver/lung mets-Stage 4
MSS KRAS G13D
2/18 PET=liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 PET=mets shrinking
7/18 CT=4 new liver mets/lung mets growing, Folfiri stopped working, looking at Clinical Trials
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8

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Shana
Posts: 397
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Mon May 07, 2018 4:10 pm

Good luck!

Wishing you success with Keytruda! :D

Shana
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
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

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juliej
Posts: 2852
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Mon May 07, 2018 6:33 pm

Cynthia,

I'm feeling good about this! As you said, irinotecan might be keeping things somewhat stable but it isn't working as it should. Time to change things up! Considering your large number of mutations, it seems logical to try Keytruda.

Keep us posted. Sending lots of 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

Bschreibs
Posts: 13
Joined: Wed Dec 27, 2017 9:22 pm

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

Postby Bschreibs » Tue May 08, 2018 4:55 am

Jack&KatiesMommy wrote:The mutations identified in my cancer are:

KRAS G12A
AURKA amplification
APC E1379
ARFRP1 amplification
BCL2L1 ampliification - equivical
FANCG E105
GABRAG K173T
GNAS amplification
SRC amplification
TOP1 amplification
TP53 R172H
ZBF217 amplification

Microsatellite stable
Tumor Burden TMB Intermediate 12 Muts/Mb

Disease-relevant Genese with NO reportable alterations identified:

BRAF
NRAS


Hi, this is exciting news as I have 19 mutations and i’m MSS. I’ve been on Folfiri and Avastin for 10 rounds and have seen shrinkage thankful. My next scan is in 4 weeks and depending the results I will be adding Keytruda to the mix. Thanks for sharing!

Bschreibs
Posts: 13
Joined: Wed Dec 27, 2017 9:22 pm

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

Postby Bschreibs » Tue May 08, 2018 5:33 am

Bschreibs wrote:
Jack&KatiesMommy wrote:The mutations identified in my cancer are:

KRAS G12A
AURKA amplification
APC E1379
ARFRP1 amplification
BCL2L1 ampliification - equivical
FANCG E105
GABRAG K173T
GNAS amplification
SRC amplification
TOP1 amplification
TP53 R172H
ZBF217 amplification

Microsatellite stable
Tumor Burden TMB Intermediate 12 Muts/Mb

Disease-relevant Genese with NO reportable alterations identified:

BRAF
NRAS


Hi, this is exciting news as I have 19 mutations and i’m MSS. I’ve been on Folfiri and Avastin for 10 rounds and have seen shrinkage thankful. My next scan is in 4 weeks and depending the results I will be adding Keytruda to the mix. Thanks for sharing!


Also, where are you being treated? Thanks

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Sophy
Posts: 245
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

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

Postby Sophy » Wed May 09, 2018 4:57 pm

That's great you have a plan and a helpful onc on your side. Hoping that the Keytruda will work well for you and wishing you and your family all the best
Sophy
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Nov 2017 CT show still NED
Continuing ADAPT


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