CEA again

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Luna18
Posts: 9
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

CEA again

Postby Luna18 » Mon Aug 01, 2022 12:58 pm

Hello,
This is the first time (well, technically second time, but I could not access my first account that I created in 2017) writing in this forum, but I have spent many hours reading it during the past 5 years and I always found hope.
My dear sister Maria (who is in Spain), was diagnosed with colon cancer with one liver metastasis in 2017. It has been a very tough road for her, bus she has always been positive. Two years ago, she had recurrence in liver and lungs (very small spots). She had excellent response to chemo (Folfori+Avastin) and since March of last year has been on maintenance (Avastin+ low toxicity chemo). Everything was working fine until a few months ago where I started noticing that CEA was slowing rising (always within the normal range <5). Last month rose up to 5.05 (slightly higher than normal <5), and after two weeks was retested and were were relieved to see the CEA down to 4.33 (normal <5). Now (a month later) came back to 6.9 (normal <5), and we are concerned again. In her previous recurrences, she always had CEA increasing, but this time was increasing for sometime and the decreased and then increased again (above normal range). Any thouhgs? she has an appoitment with Onc tomorrow and she has scheduled already a PET for next week Friday.
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colonoscopy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

skb
Posts: 96
Joined: Tue Mar 28, 2017 2:00 pm

Re: CEA again

Postby skb » Tue Aug 02, 2022 12:11 pm

Having a PET scan is the right approach and I am glad it has already been scheduled. During recurrence of cancer, usually the CEA rises continuously. It is of some comfort to know that in the case of your sister, it has not been continuously increasing but kind of fluctuating and staying around 5.

CEA alone, as you know is never a good indicator for cancer recurrence or cure. In some people like me, the initial tumor and a lung recurrence did not cause CEA to rise above 0.5 but later it rose to high numbers during an abdominal recurrence. Some scientists attribute it to change in tumor biology. CEA can change due to non-cancerous infections also.

For now, waiting for the PET scan results and not worrying too much about the CEA is all we can do. Good luck.
3/21/17: Dx T3N0M0-mid rectal 4.5cm tumor
4/18 to 5/22/17: chemoradiation- Xeloda and daily radiation (25 doses)
6/28/17: clean biopsy, clean scans
8/09/17: MRI - no evidence of tumor, no surgery, starts wait and watch
8/17/17 to 12/1/17: adjuvant chemo with Folfox
8/19 VATS wedge on 1cm lung nodule
7/17/21- Clean CT, MRI, CEA 15.6 !
8/24/21- PET , biopsy finds metastasis along obturator lymph nodes
10/1/21- Surgery to remove metastasis , 12 rounds of FOLFIRI
4/15/22- Clean scan, normal CEA

Koreysue
Posts: 248
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA again

Postby Koreysue » Tue Aug 02, 2022 1:50 pm

Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue
Dx: 6/2017 stage 3 colon cancer
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/2021 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8

Luna18
Posts: 9
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: CEA again

Postby Luna18 » Wed Aug 03, 2022 9:17 am

skb wrote:Having a PET scan is the right approach and I am glad it has already been scheduled. During recurrence of cancer, usually the CEA rises continuously. It is of some comfort to know that in the case of your sister, it has not been continuously increasing but kind of fluctuating and staying around 5.

CEA alone, as you know is never a good indicator for cancer recurrence or cure. In some people like me, the initial tumor and a lung recurrence did not cause CEA to rise above 0.5 but later it rose to high numbers during an abdominal recurrence. Some scientists attribute it to change in tumor biology. CEA can change due to non-cancerous infections also.

For now, waiting for the PET scan results and not worrying too much about the CEA is all we can do. Good luck.


Thank you very much for your reply and suggestions. My sister met her ONC yesterday, and he said that these fluctuations in CEA (up, down and up again) mean nothing. He suggested to wait a month more and retest again, but since my sister has already scheduled a PET (and her 3 month TAC tests was in a few weeks), he said ok. She has her PET appointment for next week Friday and next ONC visit with PET results on Aug 19. I will try not to worry too much meantime.
Best wishes,
Patricia
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colonoscopy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

Luna18
Posts: 9
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: CEA again

Postby Luna18 » Wed Aug 03, 2022 9:21 am

Koreysue wrote:Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue

Hi Ksue,
Thanks for your reply. I checked your signature and I saw that your CEA also bounces a lot. I am wondering if your lab uses a 3 scale (<3 is normal values) or 5 (<5 is a normal value) scale for normal CEA. My sister is now getting results for a <5 scale, but the other lab she used to go had a 3 scale.
Best wishes,
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colonoscopy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

Koreysue
Posts: 248
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA again

Postby Koreysue » Wed Aug 03, 2022 1:44 pm

Luna18 wrote:
Koreysue wrote:Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue

Hi Ksue,
Thanks for your reply. I checked your signature and I saw that your CEA also bounces a lot. I am wondering if your lab uses a 3 scale (<3 is normal values) or 5 (<5 is a normal value) scale for normal CEA. My sister is now getting results for a <5 scale, but the other lab she used to go had a 3 scale.
Best wishes,


My lab considers 0.0-3.4 normal range (for non-smokers)

My CEA tests drive me absolutely bonkers. I am goin in a month for a recheck in a month because mine was 3.7 in April and now 3.8. It has been higher than that and lower, with clear scans. Weird.
Dx: 6/2017 stage 3 colon cancer
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/2021 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8

Luna18
Posts: 9
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: CEA again

Postby Luna18 » Wed Aug 03, 2022 2:03 pm

Koreysue wrote:
Luna18 wrote:
Koreysue wrote:Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue

Hi Ksue,
Thanks for your reply. I checked your signature and I saw that your CEA also bounces a lot. I am wondering if your lab uses a 3 scale (<3 is normal values) or 5 (<5 is a normal value) scale for normal CEA. My sister is now getting results for a <5 scale, but the other lab she used to go had a 3 scale.
Best wishes,


My lab considers 0.0-3.4 normal range (for non-smokers)

My CEA tests drive me absolutely bonkers. I am goin in a month for a recheck in a month because mine was 3.7 in April and now 3.8. It has been higher than that and lower, with clear scans. Weird.

Thanks again for your prompt response. It means a lot to me, because your CEA bounces a little bit higher than the normal range, but you have been there for quite some time with clear scans, which at the end it is the most important.
Best wishes,
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colonoscopy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

MadMed
Posts: 166
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: CEA again

Postby MadMed » Wed Aug 03, 2022 2:58 pm

I think you're like me, CEA is not a good indicator of anything. I met with my oncologist yesterday and she pretty much told me that.
Yours is around 3.4. When you had full blown T3 it was 6.1.
Check what might be causing inflammation in your life, you event went to 4.6 in 2020 and nothing happened from that.

Maddening for sure, but seems unrelated.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

I_will_fight
Posts: 103
Joined: Mon Jun 29, 2020 3:38 pm

Re: CEA again

Postby I_will_fight » Wed Aug 03, 2022 4:46 pm

CEA can be a sign of inflammation or even liver distress. Obviously a rising CEA trend should be a concern.

Has your sister considered Signatera? It is available in Spain and it is meant to be more sensitive than CEA (and 100% specific)

Best regards

Javi
46 yo male Spain
06/20 - 6cm T3N0M0 CC splenic flex
No liver mets, 3 and 4 mm lung dots (unlikely to be mets)
lymp 0/37
MSH6- other MMR+
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, 13cm clear margins, optimistic surgn.
08/20 - CAPOX regime, 4 cycles.
11/20 - CAPOX completed. CAT scan: lesion in liver, suspect hemoangioma, no changes lung dots.
12/20 - Clean colonoscopy
02/21 - MRI liver lesion is nonspecific, stable.

Luna18
Posts: 9
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: CEA again

Postby Luna18 » Wed Aug 03, 2022 5:08 pm

I_will_fight wrote:CEA can be a sign of inflammation or even liver distress. Obviously a rising CEA trend should be a concern.

Has your sister considered Signatera? It is available in Spain and it is meant to be more sensitive than CEA (and 100% specific)

Best regards

Javi


Hi Javi,
Is Signatera the same as liquid biopsy? My sister's ONC said that liquid biopsy is only available for lung cancer in Spain. Do you know where we can ask more information about it?
Thanks so much,
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colonoscopy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

Koreysue
Posts: 248
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA again

Postby Koreysue » Wed Aug 03, 2022 5:38 pm

Yes, I am creeping up on 5 years.
Sending love to your sister and you,
KSue
Dx: 6/2017 stage 3 colon cancer
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/2021 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8

Koreysue
Posts: 248
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA again

Postby Koreysue » Wed Aug 03, 2022 5:42 pm

MadMed wrote:I think you're like me, CEA is not a good indicator of anything. I met with my oncologist yesterday and she pretty much told me that.
Yours is around 3.4. When you had full blown T3 it was 6.1.
Check what might be causing inflammation in your life, you event went to 4.6 in 2020 and nothing happened from that.

Maddening for sure, but seems unrelated.


Yea, I really don’t know why he is still even having me do cea tests. I am always trying to solve the mystery of why it isn’t as low a some people I see on here, and why it bounces so much. The only thing I can think, is that it is from gastritis which I do have. Who knows ?!
Ksue
Dx: 6/2017 stage 3 colon cancer
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/2021 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8

I_will_fight
Posts: 103
Joined: Mon Jun 29, 2020 3:38 pm

Re: CEA again

Postby I_will_fight » Thu Aug 04, 2022 12:52 am

Luna18 wrote:
I_will_fight wrote:CEA can be a sign of inflammation or even liver distress. Obviously a rising CEA trend should be a concern.

Has your sister considered Signatera? It is available in Spain and it is meant to be more sensitive than CEA (and 100% specific)

Best regards

Javi


Hi Javi,
Is Signatera the same as liquid biopsy? My sister's ONC said that liquid biopsy is only available for lung cancer in Spain. Do you know where we can ask more information about it?
Thanks so much,



Yes it is one of the several liquid biopsies.

It is only available privately, It costs quite a bit, 3000 EUR for the first extraction and then 1000 for each subsequent test, but I think it is useful.

The major problem is that a bit of cancerous tissue is required, and if your sister´s onc does not approve it then you will have to get your hospital to release the tissue to another hospital where this can be performed, then they need to send a sambple of this issue to the lab. And then I guess they could return the paraffined blocks to your original hospital.

I can get you in touch with my oncologist (who reluctantly approved my test) and to the Signatera Rep in Spain.

Send me PM if you want and we can chat
46 yo male Spain
06/20 - 6cm T3N0M0 CC splenic flex
No liver mets, 3 and 4 mm lung dots (unlikely to be mets)
lymp 0/37
MSH6- other MMR+
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, 13cm clear margins, optimistic surgn.
08/20 - CAPOX regime, 4 cycles.
11/20 - CAPOX completed. CAT scan: lesion in liver, suspect hemoangioma, no changes lung dots.
12/20 - Clean colonoscopy
02/21 - MRI liver lesion is nonspecific, stable.

MadMed
Posts: 166
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: CEA again

Postby MadMed » Thu Aug 04, 2022 10:36 am

Koreysue wrote:
Yea, I really don’t know why he is still even having me do cea tests. I am always trying to solve the mystery of why it isn’t as low a some people I see on here, and why it bounces so much. The only thing I can think, is that it is from gastritis which I do have. Who knows ?!
Ksue


Well, yeah, numerous papers about gastritis causing rise in CEA, eg:
https://www.ejmaces.com/ejmaces-articles/the-diagnostic-value-of-tumor-markers-and-endoscopy-in-patients-with-gastric-disorders.pdf
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Luna18
Posts: 9
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: CEA again

Postby Luna18 » Mon Aug 15, 2022 11:42 am

My sister had the PECT/TAC done last Friday. In a few day we will get the results. I will keep you informed.
Best wishes,
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colonoscopy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED


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