Keytruda....Working for MSS....Mutation Burden is the Key

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Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Pyro » Mon Mar 25, 2019 1:19 pm

Well, had my first CEA test after 3 weeks of Keytruda, it went from 10 to 30, it's usually a good marker for me. Here is hoping it's psuedo progression!
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boswind » Mon Mar 25, 2019 2:59 pm

Pyro wrote:Well, had my first CEA test after 3 weeks of Keytruda, it went from 10 to 30, it's usually a good marker for me. Here is hoping it's psuedo progression!


Thank you for the info. I think it is psuedo progression.

I had first Keytruda infusion on Mar 14. I will have the CEA test on Apr 4 the day when I get the second Keytruda infusion.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Pyro » Tue Mar 26, 2019 8:08 am

boswind wrote:
Pyro wrote:Well, had my first CEA test after 3 weeks of Keytruda, it went from 10 to 30, it's usually a good marker for me. Here is hoping it's psuedo progression!


Thank you for the info. I think it is psuedo progression.

I had first Keytruda infusion on Mar 14. I will have the CEA test on Apr 4 the day when I get the second Keytruda infusion.


Realize I'm MSS, doing this due to mutation burden. What do I do if it's real progression? I swore I'd never do chemo again, kind of let the Onc. Know that yesterday. I'm rethinking my stand, a little scared. My highest CEA test was taken a month after my diagnosis in 2015, when I had cancer everywhere, it was about 60. My tumor burden was about a 12.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boswind » Tue Mar 26, 2019 2:33 pm

@Pyro I have the same concern as you do. I am willing to have Ketruda because I am against walll; no good alternatives remaining to me. I wish for the best.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Pyro » Wed Mar 27, 2019 7:05 am

boswind wrote:@Pyro I have the same concern as you do. I am willing to have Ketruda because I am against walll; no good alternatives remaining to me. I wish for the best.


Well reading your signature I would say! I thought I had a lot of chemo at 77 rounds, you definitely have me beat. I didn’t totally use up FOLFURI yet but I really never want to go back to it, Onc. wants to just try vectibux if Keytruda fails, I might do that. I get it, I think some cancer patients don’t, not doing some available treatment will shorten your life as a stage 4 person, but I wasn’t really living on chemo, just suffering or recovering. I’m young with a wife and kids, some of these decisions are impossibly difficult. I hope Keytruda works, basically no side effects so far, but I know they’re coming.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

brokenwings
Posts: 99
Joined: Mon Jan 07, 2019 1:50 am

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby brokenwings » Wed Mar 27, 2019 7:21 am

Praying for you. I really hope Keytruda works for you.

Keep us posted.

Hugs,

Paola
DX January 2019
Liberkulien Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay.Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: not optimally resectable, surgery cancelled. Right ovary removed though...
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
06/25: 4th cycle
07/03: peritoneography
07/04: exploratory laparoscopy

boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boswind » Sun Mar 31, 2019 3:38 pm

@Pyro
I searched info about psuedo-progression on line, and found it is not based on variation of the CEA; it is based on variation of tumor size and the symptoms. Simply speaking, during a chemo drug is newly applied, if after the tumors initially become larger and/or the number of tumors increases then the tumors shrink and/or some of them disappear, we say it is a psuedo progression.

If your old CEA stayed stable, after Keytruda started your CEA had a large jump, most likely Keytruda is working. As we know, elevated CEA is largely due to dead tumor cells. When Keytruda is killing tumor cells, more dead tumor cells in our body, which resulted in a jump in the CEA level. We call it CEA flares ?
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

User avatar
Jack&KatiesMommy
Posts: 590
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Jack&KatiesMommy » Sun Mar 31, 2019 8:58 pm

After my first treatment my CEA went from 39.6 to 66.4. Then 3 weeks later it went back to 39.2...and then it continued down after that.

Praying for both of you!

Cynthia
Last edited by Jack&KatiesMommy on Mon Apr 01, 2019 3:44 pm, edited 1 time in total.
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(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
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Pyro » Sun Mar 31, 2019 9:01 pm

boswind wrote:@Pyro
I searched info about psuedo-progression on line, and found it is not based on variation of the CEA; it is based on variation of tumor size and the symptoms. Simply speaking, during a chemo drug is newly applied, if after the tumors initially become larger and/or the number of tumors increases then the tumors shrink and/or some of them disappear, we say it is a psuedo progression.

If your old CEA stayed stable, after Keytruda started your CEA had a large jump, most likely Keytruda is working. As we know, elevated CEA is largely due to dead tumor cells. When Keytruda is killing tumor cells, more dead tumor cells in our body, which resulted in a jump in the CEA level. We call it CEA flares ?


I thank you for your research, I had not seen that. Even better, you improved my evening.
Thanks to you JKM as well to drive it home
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Pyro » Tue Apr 02, 2019 9:37 pm

Went to the oncologist office today to pick something up, made mention of a cough, off I go to an X-ray. I think they’re serious about nipping keytruda side effects in the bud. No pneumonitis, wish those photos would show cancer or lack there of.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boswind » Sat Apr 06, 2019 1:20 pm

My CEA went up a lot from 12 to 34:

Mar 7: CEA=12
Mar 14: Keytruda
Apr 4: CEA=34.2 & 2nd Keytruda given

Doctor did not say much about the CEA; he just said the drug for mCRC MSS was too new and they were learning; they will monitor my side-effects closely.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

boxhill
Posts: 307
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boxhill » Sat Apr 06, 2019 3:07 pm

Not to rain on everyone's parade--I'm pinning my hopes on Keytruda too--I just read that 12 % of patients on Keytruda with a variety of cancers *seem* to experience hyperactivity of the cancer shortly after starting the regimen. And apparently they were not talking about false progression. The article I read mentioned that a group particularly affected seemed to be those with head and neck cancers, but gave no other specifics.

There is, however, disagreement about whether this is actually caused by immunotherapy.

https://www.cancertodaymag.org/Pages/ca ... lKqiAxTpAk
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda

Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Pyro » Sat Apr 06, 2019 6:56 pm

Well @boswind, I guess we are in this “progression” together. The hyperactivity could be from me removing chemo from my life, if the Keytruda isn’t working, I’d expect a veritable cancer farm inside me.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boswind » Sat Apr 06, 2019 8:00 pm

@Pyro I read the following article posted on onclive.com:
https://www.onclive.com/publications/On ... -biomarker

It indicates TMB will be an challenging immunotherapy biomarker. Oncologists do not know if a specific patient with high TMB will respond to a PD-1/PD-L1 immunotherapy drug, although for a type of cancer the group with highest TMB has a highest response rate.
Last edited by boswind on Sat Apr 06, 2019 9:10 pm, edited 1 time in total.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Pyro » Sat Apr 06, 2019 9:03 pm

boswind wrote:@Pyro I read the following article posted on onclive.com:
https://www.onclive.com/publications/On ... -biomarker

It indicates TMB will be an challenging immunotherapy biomarker. Oncologists do not know if a specific patient with high TMB will respond do a PD-1/PD-L1 immunotherapy drug, although for a type of cancer the group with highest TMB has a highest response rate.


Thanks! I kind of expected it, if anything, I’m glad I’m not on chemo
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it


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