Increasing CEA

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Claudine
Posts: 727
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Increasing CEA

Postby Claudine » Tue Jun 21, 2022 1:31 pm

Hi Dennis,
Sorry about the increase... It's so nerve wrecking :(
One thing I'd ask your doc is whether you should get a PET scan instead of the usual CT. My husband had a series of "clear" CT scans despite high CEA values, and it took a PET to find a tumor in his rectum - it was most likely there before but wasn't detected.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; reversal 09/22;
L2-L3-L4-L5 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri + Avastin 03/19 - 01/20;
adjuvant chemoradiation (Xeloda) 06/22

Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Tue Jun 21, 2022 2:20 pm

Claudine wrote:Hi Dennis,
Sorry about the increase... It's so nerve wrecking :(
One thing I'd ask your doc is whether you should get a PET scan instead of the usual CT. My husband had a series of "clear" CT scans despite high CEA values, and it took a PET to find a tumor in his rectum - it was most likely there before but wasn't detected.

Hi Claudine,

Yes, that’s the plan. We had agreed that if the CEA continued to rise I would get a PET scan. Was you husbands tumor in a new location or was it a recurrence?
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

Claudine
Posts: 727
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Increasing CEA

Postby Claudine » Tue Jun 21, 2022 2:28 pm

Was you husbands tumor in a new location or was it a recurrence?


We'll never know! His primary tumor wasn't found when he was first diagnosed 4+ years ago, so this rectal one could either be a second primary (the onc's opinion), or it could be the original primary that finally became large enough to be detectable (the rectal surgeon's opinion). I read a research article that shows that primary tumors as small as a pencil head can metastasize...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; reversal 09/22;
L2-L3-L4-L5 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri + Avastin 03/19 - 01/20;
adjuvant chemoradiation (Xeloda) 06/22

Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Tue Jun 21, 2022 2:32 pm

Thanks, I never knew that. Being the optimist I am, I’m still holding out hope it’s nothing. On every CT and PET scan I’ve had they have noted gallstones, maybe that has something to do with the rise. I guess I’ll find out soon!
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

User avatar
Peregrine
Posts: 106
Joined: Tue Mar 01, 2022 1:18 am

Re: Increasing CEA

Postby Peregrine » Tue Jun 21, 2022 2:35 pm

Dennyp -

Have you ever had your primary tumor tested for MSI-status and for KRAS/NRAS/BRAF mutation status? This might be relevant if you ever have to go back on chemo.

Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Tue Jun 21, 2022 2:38 pm

Yes I have, MSS, KRAS, G12D. Not a whole lot of options is my understanding. Actually this was the results from a recurrence I had to a single lymph node. Is it possible the primary tumor was different?
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

User avatar
Peregrine
Posts: 106
Joined: Tue Mar 01, 2022 1:18 am

Re: Increasing CEA

Postby Peregrine » Tue Jun 21, 2022 10:39 pm

Dennyp wrote:Yes I have, MSS, KRAS, G12D. Not a whole lot of options is my understanding. Actually this was the results from a recurrence I had to a single lymph node. Is it possible the primary tumor was different?

Hi Denny,
I don't really know the answer to your question, but I suppose that in some cases a met might begin to mutate under certain circumstances, for example if the met has been treated by a lot of strong chemo and is now starting to develop resistance. This is just a guess. I think I remember reading about someone where this sort of thing happened.

Hopefully you won't ever have to go back on chemo again, but if you do, there might be some new clinical trials available for MSS patients. A link to Fight CRC's MSS clinical trial finder can be found here.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53238&p=507238#p490042

For example, here is a search for G12D-relevant Phase III clinical trials in the U.S., but there are over three hundred G12D trials of various kinds in other places:

https://fightcolorectalcancer.org/trial-results/?location%5B0%5D=united-states&phase%5B0%5D=phase-3

There are lots of trials for KRAS G12D because it's one of the most common KRAS mutations.
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Image
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Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Tue Jun 21, 2022 11:32 pm

Awesome info, thanks!
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Wed Jun 22, 2022 12:49 pm

My doctor wants to wait another month and do another CEA. I like this plan!
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Thu Jul 21, 2022 2:02 pm

My CEA today stayed the same, I assume that’s a good sign. My oncologist doesn’t seem too concerned so we’ll do a PET scan for my next routine scan.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

Rikimaroo
Posts: 430
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Increasing CEA

Postby Rikimaroo » Thu Jul 21, 2022 3:53 pm

That is good news. Always great to here stability, but always anxiety until the next CEA test my friend. I know how you feel, its crazy, but you know what live for the present brother, not the future.

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.

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

Re: Increasing CEA

Postby skb » Mon Jul 25, 2022 6:02 pm

Dennyp wrote:My CEA today stayed the same, I assume that’s a good sign. My oncologist doesn’t seem too concerned so we’ll do a PET scan for my next routine scan.


Good idea waiting out and measuring CEA before doing any drastic surgery.
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

Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Mon Aug 29, 2022 11:26 am

My CEA went down today from 6.6 to 6.2. Waiting for the results of PET scan, but am hoping the CEA decrease will portend good news.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

Luna18
Posts: 17
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: Increasing CEA

Postby Luna18 » Mon Aug 29, 2022 12:31 pm

Happy to hear your CEA went down, and I hope your PET is all clear!
Best wishes
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colostomy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection, and colostomy reversal
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

Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Increasing CEA

Postby Dennyp » Thu Sep 01, 2022 9:45 pm

Clean PET scan! Back in 6 weeks to check CEA.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED


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