Trying Keytruda Off-Label (MSS with a Twist)

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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 » Fri Jun 08, 2018 3:47 pm

Great news! Keep those numbers dropping! :D
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...

Capri
Posts: 65
Joined: Thu Apr 19, 2018 5:59 pm

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

Postby Capri » Mon Jun 11, 2018 1:41 pm

I hope that your numbers plummet! They're heading in the right direction--I'm real happy for you. Please keep us posted on how things go, Cynthia. Praying for you!
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.

rp1954
Posts: 1380
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Mon Jun 11, 2018 8:44 pm

Congratualtions on the CEA decline.

I would still track CA199, LDH, MCV (a pronounced rise is probably desirable if folate replete) and maybe some others on my list to investigate your response and status thoroughly. It is harder to hit what we don't see. My wife would have been backdoored many times by mutated cells with rogue protein expressions if we didn't do this.

What's really damning about poor diagnostics (e.g. CEA only) is sometimes how little it cost us to improve those extra trends over the basic background treatment. e.g. reversing rapidly exponential CA199 cost us one more tiny generic chemo pill where CEA was stabilized; reversing slowly exponential AFP simply cost us extra vitamin C in the IV (in addition to the existing treatment). Other marker combos or images have been solved by one or (lots) more 5 or 10 cent pills, sometimes with more expensive 25-50 cent ones too.

I view any marker (or scan) going exponential like a nuclear device awry, between the China syndrome and full nuclear detonation. If your doctors won't/can't help on panels and markers, pls talk about the numbers here.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

orlar
Posts: 65
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Location: oregon

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

Postby orlar » Wed Jun 13, 2018 1:09 pm

I'm really glad to see your CEA dropping. Keep that trend going!
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 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 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
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, 9/18-56

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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 Jun 25, 2018 11:36 pm

Great news...and hopefully good news for other MSS patients with a moderate mutation load.....after two treatments of Keytruda...this MSS patient's CEA (and my CEA is very sensitive and very reliable as an indicator of cancer for the last 7 years) went from 60.4 to 39.4 (week 5) and then to 23.8 (week 7.). Obviously nothing is certain but this is really good news...and an exciting development for not only myself but other patients that are MSS!

Cynthia

PS rp1954...I am not sure what my other number mean. My CEA has been such a great marker...showing cancer many months before we could ever find something on even a PET scan.

They do not test my CA199

MCV: 95.7 H 95.9 H 96.9 H

LDH: 5/3/18: 182. 5/25/18: 172 6/21/18: 189
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

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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 Jun 26, 2018 4:40 pm

Great news! Very happy to hear that you're responding well and CEA is dropping :)
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...

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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 Jun 26, 2018 4:49 pm

Jack&KatiesMommy wrote:Great news...and hopefully good news for other MSS patients with a moderate mutation load.....after two treatments of Keytruda...this MSS patient's CEA (and my CEA is very sensitive and very reliable as an indicator of cancer for the last 7 years) went from 60.4 to 39.4 (week 5) and then to 23.8 (week 7.). Obviously nothing is certain but this is really good news...and an exciting development for not only myself but other patients that are MSS!

Wonderful news, Cynthia! It's working!!! :D :D :D

You're right: this is very good news for MSS patients (that would include me). Sending many good thoughts and lots of prayers 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

rp1954
Posts: 1380
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Wed Jun 27, 2018 1:40 am

Jack&KatiesMommy wrote:...my CEA is very sensitive and very reliable as an indicator of cancer for....years

My wife's CEA is a good marker until it flatlines near its historical baselines. But we got a slowly rising tide off AFP that doubled more than five times during off-and-on pill/IV C reductions. We get roller coaster action off CA199 with treatment changes that no longer go back to baseline on chemo + reduced supplements. The big deal is that we can stop and partly reverse them by adding mild or healthful things to immunochemo that already has components that have been (earlier) used to treat cancers associated with those markers.

A number of Erbitux patients have had dramatic CEA responses but then turned out to have non CEA cancer cells too, or develop unmonitored marker expressions. We reject the lack of extra markers monitoring approach for mCRC.

Of course, there are a lot of oncologists that will tell you CA199 and AFP are not a lot of things for CRC. They would have been my wife's bad luck...

PS rp1954...I am not sure what my other number mean.
MCV: 95.7 H 95.9 H 96.9 H

You'll have MCV in all CBC tests. The peaks and valleys, rises and declines, at dx; before, during, and after treatments have broad chemo activity meanings that we can compare with papers here.

LDH: 5/3/18: 182. 5/25/18: 172 6/21/18: 189

These are in the lowest range of LDH values for mCRC that maybe higher and more meaningful with KRAS mutants and CA199 above CRC medians at dx (~19). This is about mid range for "normal people".

My CEA has been such a great marker...showing cancer many months before we could ever find something on even a PET scan.
They do not test my CA199
The first test level is usually one of the most important ones. For 7-10% of CRC patients, serum CA199 is totally useless after the first value. For everybody else, it has potential uses.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

mariane
Posts: 625
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Wed Jun 27, 2018 6:38 pm

Cynthia, I am so happy! These are wonderful news for you and other MSSs!!! Thank you for sharing!
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!

dragonpppoe
Posts: 1
Joined: Fri Oct 06, 2017 7:31 pm

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

Postby dragonpppoe » Sun Jul 01, 2018 7:47 pm

Great news!

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HopeForJesse
Posts: 244
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

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

Postby HopeForJesse » Thu Jul 05, 2018 9:54 pm

Cynthia,
I missed your original post but am glad to have not seen it til now with the better news of your CEA dropping and you responding, Pray that continues and you can return to the ranks of NED again!
Mary
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS, mod dif adenocarcinoma, high grade dysplasia, TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
4/18 CEA 87 :( 5/18 5 days SBRT radiation to sternum CEA declining again 6/13/18 21.1
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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

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

Postby anitaw » Sun Jul 08, 2018 9:02 pm

So happy Cynthia to see these good numbers. You are always in my prayers!
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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