Rising CEA After 2 1/2 Years on Keytruda

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Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Rising CEA After 2 1/2 Years on Keytruda

Postby Jack&KatiesMommy » Sat Mar 27, 2021 8:10 pm

Well after 2 1/2 years (with minor CEA rises slowly rising to 5.0 or 5.2 over several months and then dropping back down to 1.2 or lower—every year for the last 2 1/2 years during the winter months) my CEA now has now risen to 6.8. So I am so scared that this will be it. For the last 2 1/2 years I have been going along....doing great on Keytruda. I was diagnosed in August 2011 when my children were 8 and 4 and I prayed snd asked God to give me 10 years to be there for them as they grew up. This August will be 10 years and I am so grateful for having been given this time to raise my children.

Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(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 lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED 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,

I_will_fight
Posts: 147
Joined: Mon Jun 29, 2020 3:38 pm

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby I_will_fight » Sun Mar 28, 2021 12:58 am

Hi Cynthia,

While CEA surges are scary they do not necessarily mean you have progression. CEA can flare up with inflammation.

I guess you should get a CT scan as soon as possible to confirm or hopefully discard progression. Have you discussed this CEA increase with your oncologist?

For what´s worth, I keep reading that CEA is more sensitive to liver mets than it is to lung´s mets, so getting an hepatic MRI might also be useful if the CT is not clear.

Good luck!
46 yo male Spain
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT
07/23- Clear CT, normal markers.
09/23 - Negative Signatera
01/24 - Clear CT

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Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby Jack&KatiesMommy » Sun Mar 28, 2021 8:47 am

I_will_fight wrote:Hi Cynthia,

While CEA surges are scary they do not necessarily mean you have progression. CEA can flare up with inflammation.

I guess you should get a CT scan as soon as possible to confirm or hopefully discard progression. Have you discussed this CEA increase with your oncologist?

For what´s worth, I keep reading that CEA is more sensitive to liver mets than it is to lung´s mets, so getting an hepatic MRI might also be useful if the CT is not clear.

Good luck!


((HUGS)). Thank you for your encouragement. My oncologist is ordering a PET/CT.
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(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 lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED 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,

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby Rikimaroo » Sun Mar 28, 2021 9:06 am

Hi Cynthia,

PET/CT is the right scan. CT Scans are not very good, unless you have a large mass and it can be seen. In Fact I had two CT Scans the past 6 months and they showed no progression but my CEA kept going up from 5.2 to 51. Then I got a PET/CT and it showed progression. Nothing significant but progression none the less, which means back on Chemo FOLFIRI to beat it back down.

6.8 is not bad, although scary any CEA increase. Most likely nothing will show on PET/CT and you can keep doing what you have been doing, or he can hit you with a dose of CHEMO to knock things back down if anything. There treating cancer like a chronic illness. I hate Chemo by the way, but I need to live as long as possible.

I get it once every 3 weeks, too which helps.

I hope its nothing and you can keep on the Keytruda!!

Best
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

stu
Posts: 1612
Joined: Sat Aug 17, 2013 5:46 pm

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby stu » Mon Mar 29, 2021 4:25 am

Hi ,
Around ten years into this my mum’s CEAs are no longer reliable. Something is causing them to intermittently spike . Happening over two years and scans remain clear . They spike for a few months then drop down again .
Not sure if it’s attributed to vein issues in her abdomen, post op liver resections. Or something as simple as acid , so we make sure she takes her anti acid meds prior to scans .
Before it always indicated a recurrence but not this time .

So glad you got to raise your children , that’s a blessing for sure , but still I will pray from more for you .
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
Oct 2018. Another clear scan .

chadwick1
Posts: 28
Joined: Sat Oct 13, 2018 9:04 am
Location: Upstate NY

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby chadwick1 » Mon Mar 29, 2021 10:43 am

Hi Cynthia,

We had a discussion a while back about TMB and Keytruda when I was looking into that. Ever since then I’ve thought about your journey from time to time as there are some similarities to mine. It’s been a source of hope and inspiration for me, so thank you for continuing to share your story. I’m looking to be able to try Keytruda soon (TMB 13.2) and hopefully also have a good response. I agree with the others that a slight spike like that could be nothing but it’s good you’re getting a PET to check. Fingers crossed for you; may you have many more years with your kids!

Chad
DX 2017, 37yo father of two
Stage 3b RC (T3N1bM0) normal CEA, KRAS G12V
Radiation + 5FU
LAR w/ temp loop ileo. 2/33 lymph
FOLFOX, 9 rounds
2018 CT mass in liver & lung
MRI confirms liver, Stage 4
Liver resection
2019 lung nodule shrank, monitor
Lung nodule grew again, resection
2020 CT new lung nodule + 2 lymph nodes
FOLFIRI, good response
2021 pause FOLFIRI, attempt lobectomy, aborted
Radiation to lung

saltygirl
Posts: 155
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby saltygirl » Mon Mar 29, 2021 1:57 pm

Let’s hope for another 10 years!!! I have followed your story. You are a warrior. My kids are 17 (high school) and 19 (college pre med) years old. I will fight for every year as well!!!
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

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Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby Jack&KatiesMommy » Tue Mar 30, 2021 5:37 pm

Thank you everyone. I so appreciate all of your encouraging thoughts. I have my PET scheduled for this Thursday...I'll let you know after I get the results. ((HUGS))
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(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 lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED 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,

Punky44
Posts: 497
Joined: Mon Oct 01, 2018 4:29 pm

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby Punky44 » Tue Mar 30, 2021 10:25 pm

Keeping you in my prayers and hoping for a good scan on Thursday!

10 years is awesome, but now let’s go for another 10!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Vana3
Posts: 59
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby Vana3 » Wed Mar 31, 2021 5:19 pm

I will be thinking about you tomorrow and hoping you get the report fast and that it’s all clear!
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby boxhill » Wed Mar 31, 2021 6:45 pm

Keytruda can cause inflammation, and inflammation can cause CEA to rise. My personal CEA has never been as low as it was at diagnosis/surgery--same day for me!--when it was 3.4, IIRC. It's been between 6 and 8 most of the time since then.

I'm keeping my fingers crossed for you. I hope you come back to us with the news that it is just one of those anomalies.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby boxhill » Mon Apr 05, 2021 10:27 am

I keep thinking about your and your scan results. I hope we hear good news from you soon.
I have a routine MRI in a couple hours, first since December, and my scanxiety is riding high. This time I probably won't get the results until my Onc appt on Thursday.

Sending good energy your way, no matter what.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Vana3
Posts: 59
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby Vana3 » Thu Apr 08, 2021 9:56 pm

You are on my mind as well. Hoping it has all turned out ok.
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby Jack&KatiesMommy » Tue May 04, 2021 8:02 am

Hi everyone...sorry to not bring news earlier. My PET showed an enlarged lymph node near my esophagus (the same one that was enlarged 2 years ago but that decreased to normal size and SUV right before I was scheduled to have it surgically removed. The Keytruda either killed the cancer that was growing there or the Keytruda caused the inflammation in the lymph node in the way it was fighting the cancer. However, this time they think it is cancer...because my CEA is now up to 8.0 (previously it had only gone up to 5.2) and the SUV was 14.2 (which is pretty high and consistent with malignancy. I have a telehealth call with Dr. Kemeny today....I'm scared...I was hoping that it would go back down like it did before, but I don't think its going to happen this time. And the worrisome part is that this means that they Keytruda is no longer effective, at least to some degree. I will keep you all posted.
Love,
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(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 lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED 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,

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Rising CEA After 2 1/2 Years on Keytruda

Postby catstaff » Tue May 04, 2021 8:06 am

Sorry to hear that (especially with the Keytruda losing efficacy) but is the node still resectable?
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


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