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

Please feel free to read, share your thoughts, your stories and connect with others!
Pyro
Posts: 291
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Thu Apr 25, 2019 8:51 am

boswind wrote: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.


My bar napkin math says you should have new CEA results todayish? What luck?
Aug 2015- 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
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

boswind
Posts: 67
Joined: Fri Apr 11, 2014 12:04 pm

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

Postby boswind » Thu Apr 25, 2019 2:02 pm

Today is a bad day. My CEA has gone up by over 26 points over last 3 weeks, while my previous CEA (3 weeks ago) went up by 22 points over 4 weeks.

However, based on my doctor’s analysis on all results of my lab work and his suggestion, I decided to continue and completed Keytruda infusion today. I will have a CT scan before the next lab/infusion appointment. I currently have concerns and hope my case is not hyper progression.
01.24.14 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.14 Completed 5-week Radia+Xeloda
05.07.14 Had surgery
02.25.15 CT showed liver and L4 Spine involvement.
03 - 08.15, folfox + Avastin
08 - 07.17, 5FU + leucovorin + Avastin for Maintenance
07 - 01.18, Folfuri + Avastin
02.07.18 - 03.06.19, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.19 - Keytruda
05.16.19 - Folfox + Avastin

Pyro
Posts: 291
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Thu Apr 25, 2019 3:59 pm

boswind wrote:Today is a bad day. My CEA has gone up by over 26 points over last 3 weeks, while my previous CEA (3 weeks ago) went up by 22 points over 4 weeks.

However, based on my doctor’s analysis on all results of my lab work and his suggestion, I decided to continue and completed Keytruda infusion today. I will have a CT scan before the next lab/infusion appointment. I currently have concerns and hope my case is not hyper progression.


I’m sorry about your CEA test, keep positive thought about your scan! My scan is mid/end of May, just after my text CEA test.
Aug 2015- 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
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

User avatar
Jack&KatiesMommy
Posts: 595
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

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

Postby Jack&KatiesMommy » Sat Apr 27, 2019 7:23 pm

Boswind...I am praying that it is just taking a little time to kick in and that your scans will be good.

Cynthia
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

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Sun Apr 28, 2019 1:07 am

Just a thought about CEA chemo flares, the CEA flare ups lasted up to 4-6 months in the past literature with different chemo (5FU based). Although at 4 months the stress certainly builds up. Hope it breaks back to the low base line for you, soon.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Pyro
Posts: 291
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Sun Apr 28, 2019 9:07 am

rp1954 wrote:Just a thought about CEA chemo flares, the CEA flare ups lasted up to 4-6 months in the past literature with different chemo (5FU based). Although at 4 months the stress certainly builds up. Hope it breaks back to the low base line for you, soon.


I’m square in that stress, it is terrible. Do you mean previous articles from scientists/doctors when you say past literature?
Aug 2015- 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
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

boswind
Posts: 67
Joined: Fri Apr 11, 2014 12:04 pm

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

Postby boswind » Sun Apr 28, 2019 1:32 pm

Thank you all for your responses, which definitely reduce my stress level.
01.24.14 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.14 Completed 5-week Radia+Xeloda
05.07.14 Had surgery
02.25.15 CT showed liver and L4 Spine involvement.
03 - 08.15, folfox + Avastin
08 - 07.17, 5FU + leucovorin + Avastin for Maintenance
07 - 01.18, Folfuri + Avastin
02.07.18 - 03.06.19, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.19 - Keytruda
05.16.19 - Folfox + Avastin

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Sun Apr 28, 2019 11:12 pm

Pyro wrote:Do you mean previous articles from scientists/doctors when you say past literature?

Yes. But to deal my wife's situation I did several things. First, I worked on analysis of more secondary markers and panels, there were various ways to try to estimate cancer recurs vs other issues. Second, we got blood draws fairly frequently, in part for cancer monitoring, in part for other ongoing improvements. That last part, to add or change chemistry, is presumably more difficult with expensive new biologicals with more unknowns and side effects.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

deebashari
Posts: 16
Joined: Wed Feb 07, 2018 2:51 am

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

Postby deebashari » Wed May 01, 2019 10:55 pm

Jack&KatiesMommy wrote:chadwick1
My oncology team prepared an appeal to my insurance company and to Keytruda's manufacturer explaining the new evidence that there may be benefit to MSS colon cancer patients that have a high mutation burden. They worked with Foundation One (who had amassed a lot of data based on their testing and that helped. Bothe the drug company and my insurance company agreed to cover the drug's use in my case based on the appeal and the evidence submitted by my oncology team.


Hi there, were you given Keytruda at MSS with intermediate tumor burden? Thats what my mom has but everyone says it won't work for my mom. But she is MSS and has intermediate tumor burden with metastases to lung, liver, abdomen, and some lymph nodes. Can you please let me know?

Pyro
Posts: 291
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Thu May 02, 2019 7:18 am

I won’t speak for JKM but I was given it, I’m MSS with an intermediate tumor burden. Insurance wise, Merk is giving it to me for free, which means my Onc office has to pay for the time I spend in the infusion room, which is only 1/2 an hour for an infusion. My insurance (Medicare & TRICARE) doesn’t cover it, I think because the FDA hasn’t approved it for the likes of us. It’s worked for JKM, jury is still out on me, I’ll find out in a few weeks. It’s a shot in the dark, but works for some!
Aug 2015- 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
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Pyro
Posts: 291
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Mon May 06, 2019 3:32 pm

Well, my CEA was 30. I’ll take it, I’m not sure what it means except I don’t have to do chemo. Scans in 2 weeks!

That’s 3 tests in a row my CEA has been 30
Aug 2015- 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
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Pyro70
Posts: 143
Joined: Mon Jan 21, 2019 4:25 pm

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

Postby Pyro70 » Wed May 08, 2019 8:15 am

Pyro wrote:Well, my CEA was 30. I’ll take it, I’m not sure what it means except I don’t have to do chemo. Scans in 2 weeks!

That’s 3 tests in a row my CEA has been 30


Nice. Sounds good. Scan is more important than CEA. Best of luck!
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

boswind
Posts: 67
Joined: Fri Apr 11, 2014 12:04 pm

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

Postby boswind » Sun May 12, 2019 2:44 pm

Any one who took or is taking Keytruda has noticeable side affects?

After the first infusion I did not notice side effects. But after my third infusion (Apr 25), I had some noticeable side effects:
Beside fatigue, during the first week after infusion, I had moderate bone (leg) pain and muscle (calf) pain. Starting 2nd week I am having itchy rashes on my chest and back. By looking at the sheet of possible side effects the nurse gave to me, bone pain, muscle pain, rashes and itching all are possible side effects.
01.24.14 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.14 Completed 5-week Radia+Xeloda
05.07.14 Had surgery
02.25.15 CT showed liver and L4 Spine involvement.
03 - 08.15, folfox + Avastin
08 - 07.17, 5FU + leucovorin + Avastin for Maintenance
07 - 01.18, Folfuri + Avastin
02.07.18 - 03.06.19, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.19 - Keytruda
05.16.19 - Folfox + Avastin

Pyro
Posts: 291
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Mon May 13, 2019 10:53 am

I get tired, very tired, and that’s about it for now. I expect more side effects in the future, I just live one day at a time. When’s your scan? Mines the 22nd.
Aug 2015- 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
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

tbt4snow
Posts: 26
Joined: Sat Oct 27, 2018 3:16 pm
Facebook Username: Tina tran

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

Postby tbt4snow » Tue May 14, 2019 10:14 pm

I just wonder if anyone has done both Folfox and Ketruda at the same time and how bad is the side effects?
I have my crs/hipec done on April 3rd. The onset pci was 16. After the surgery, PCI is 1, part of the ileum wasn’t respectable. My onc wants me to start Folfox + Ketruda on 5/29. Then Folfox every 2 weeks, Ketruda every 3 weeks. I’m concerned my body might not ready for theses treatment yet. I lost 15bl since surgery and still losing weight. I just came out of full liquid diet this Monday. This was a setback due to bowel obstruction I had on 5/2 that landed me 4 days in hospital.
My CEA on 5/9 is 2.1. I really want to start with just Ketruda and see how I handle it. I have terrible neuropathies with Folfox last time but my onc wants to start strong.
Should I go with just Ketruda? Please advise. All feedbacks are greatly appreciate.
Thanks.
DX: CC stage 4/w ovaries & omentum mets in 12/17 49/F
High grade pT3N1bM1b sigmoid Adenocarcinoma colon
MSS-h TMB=16, NRAS-mutant
Lymph nodes: 1/2 left colic; 3/8 regional
12/2017: Exploratory laparotomy & resect of sigmoid & ovaries
Folfox/avastin 12 sessions from 1/8-6/18. 6/18 CEA 2.1
1/19: CT shows peri mets;
CEA: 12/18 5.1, 1/7/19 7.9; 1/15/19 9.1; 1/30/19: 10.6
4/3/2019 CRS/HIPEC after 4 Folfiry sessions...


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: AmyG, Gravelyguy, NHMike, zephyr and 36 guests