Trying Keytruda Off-Label (MSS with a Twist)

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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
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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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 questionable liver spots 2 are hemangioma, 3rd? PET scan-nothing "lit" up
Neuropathy has started.

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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

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Joined: Fri Jul 21, 2017 12:51 am
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 5/15/17, Right Hemi colectomy 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
2/18 PET=liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-7.2
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced

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