Rising CEA - What would you do?

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heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Rising CEA - What would you do?

Postby heiders33 » Wed Oct 16, 2019 7:21 pm

What would you all do if you were me? My CEA was 5.1 when I was diagnosed in May 2017, although that was my previous oncologist's scale before I switched to MSK so it may have been different. I had a 5 cm tumor in my rectum at that time, stage IIIA. I did radiation/chemo, had the tumor removed, did four months of adjuvant chemo, and then one met was discovered in my liver three months later. At the time of the liver met discovery my CEA was 2.1. I had my liver resected in September 2018 and my CEA was 1.8 after resection. I then did HAI and systemic chemo for six months. I finished chemo in April 2019 and my CEA has continued to rise. It was measured at 9.0 today, Oct 2019. I also had my CA-19-9 measured in December 2018 and it was 13. It was 16 in July and was 18 today. My CA-125 has stayed at 6 since June. I had a clear colonoscopy in September and had a clear CT scan this week. I have been NED since September 2018. I am KRAS G12D, MSS. Should I get a liquid biopsy, even though I've never had one? Should I get a PET scan? Should I not worry because CEA might not be a good indicator (2.1 when I had the liver met)? Could something else be causing it to rise?
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

radnyc
Posts: 412
Joined: Tue Apr 06, 2010 6:32 pm

Re: Rising CEA - What would you do?

Postby radnyc » Thu Oct 17, 2019 4:40 am

I have had similar cea issues and I know how stressful it can be. There are a large number of people you and I might be included who have false high readings. MSK did a study on this and it showed that 50% of false-positive readings. Read here:

https://www.ascopost.com/issues/august- ... al-cancer/

My suggestion is to keep monitoring it, test every 3 or 6 months for a couple of years. Once you hit 5 years out the recurrence rate is minimal. The CT scan is truly the main tool that we have, as long as those are clear everything is ok. One more thing I’ve noticed is that being dehydrated before the test seems to skew the numbers, are you drinking enough water? Do you smoke? Even one or two cigarettes can make a difference. Keep calm and take care.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: Rising CEA - What would you do?

Postby heiders33 » Thu Oct 17, 2019 7:00 am

Hi rad, that's an interesting study. I wonder if I am in that group. Mine has been rising for so long, that my oncologist just ordered a PET scan for October 31. I'm going along with it because I want to know for sure whether something is causing this rise. But that study is somewhat reassuring.

I don't smoke, and I drink at least 64 ounces of water a day. I had probably eight ounces of water, and eight ounces of Metamucil mixed with water, the morning that my blood was drawn. Interestingly, the nurse asked me if I had had enough water because my veins were just okay. Maybe I was dehydrated even so?
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

hopefulandstrong
Posts: 58
Joined: Fri Apr 19, 2019 7:11 pm

Re: Rising CEA - What would you do?

Postby hopefulandstrong » Thu Oct 17, 2019 9:25 am

This seems like excellent advice. My own CEA did a wonderful drop from from 200 to 21 to 2.8 in about 4 months. Then is suddenly jumped up to 30. Scans showed growth of Liver mets, which meant it was time to switch treatment. I have two tricky mutations - BRAF 7600 and PIC3. The therapy targeted for the BRAF was working beautifully, until it wasn't. We think the PIC3 got involved and messed up the works.

I'm still a candidate for the HAI pump, and based on reports on this board, it's still on the table. But for now, we want to arrest the liver mets so I'm on Folfoxfiri. Not fun. But it's working.

Bottom line, scans are your best bet. In my case, acting fast based on the CEA was important.

All best
54, female
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)

Deb m
Posts: 517
Joined: Tue Jan 14, 2014 10:08 am

Re: Rising CEA - What would you do?

Postby Deb m » Thu Oct 17, 2019 1:06 pm

I think I would insist on a Pet scan. I may not show anything, but then again it may. If something is going on, the earlier it's detected, the better.

Sorry your going thru all this added stress.

gfpiv
Posts: 157
Joined: Tue May 25, 2010 9:24 pm

Re: Rising CEA - What would you do?

Postby gfpiv » Thu Oct 17, 2019 7:27 pm

I was lucky in that I already knew that CEA was a good indicator for me. So when mine edged up to 7.0 (again, this varies for everyone) I asked my onc to order a PET. They did, and it showed one active spot in my liver that wasn't killed in first 50 or so rounds of chemo. So they did a SBRT laser guided non invasive surgery to one met, and got clean margins. I've been NED ever since, and my CEA has stayed stable in the normal range. Just my experience. If I were you I'd probably ask for a PET; multiple CT scans didn't pick up my last liver met but PET made it obvious. Good luck!
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Rising CEA - What would you do?

Postby Claudine » Fri Oct 18, 2019 9:34 am

I would totally ask for a PET scan. When my husband wasn't feeling well last winter they did a scan which didn't show much, then a PET that found the adrenal met.
I'm concerned right now as his CEA levels are rising again, after a period of relative stability. Although in his case there's a known met still in place, so some level of CEA above normal is to be expected. But I'm worried that it means that Folfiri and Avastin are not working anymore, and if that's the case, why would he put up with 4 more cycles? I'm planning to call his oncologist next week to discuss (he's on vacation right now...).
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

natelaugh
Posts: 94
Joined: Wed Apr 03, 2019 11:40 pm

Re: Rising CEA - What would you do?

Postby natelaugh » Fri Oct 18, 2019 10:12 pm

Claudine wrote:I would totally ask for a PET scan. When my husband wasn't feeling well last winter they did a scan which didn't show much, then a PET that found the adrenal met.
I'm concerned right now as his CEA levels are rising again, after a period of relative stability. Although in his case there's a known met still in place, so some level of CEA above normal is to be expected. But I'm worried that it means that Folfiri and Avastin are not working anymore, and if that's the case, why would he put up with 4 more cycles? I'm planning to call his oncologist next week to discuss (he's on vacation right now...).


Hi Claudine,

My dad ca19-9 blood test is a good indicator to determine if cancer had spread. We had to get one ourselves at a private lab because the oncologist don't think it is need because CEA is good enough.

Nate.
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rising CEA - What would you do?

Postby NHMike » Sat Oct 19, 2019 7:11 pm

I had a rising CEA through Adjuvant chemo and my oncologist was concerned enough to do a CT scan which found nothing. He says that he gets really concerned when it gets into the high teens. You have a history of spread, though, so that's a different story. I think continued surveillance (blood work every three months or even more often) and scans every six months would be in order.

I also have KRAS G12D so we're fellow mutants.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: Rising CEA - What would you do?

Postby heiders33 » Sun Oct 20, 2019 2:00 pm

Thanks all. I have a PET scan scheduled for October 31 so we’ll see what it says. I have a feeling that, if there’s any recurrence at all, it’s in my liver because I occasionally get slight pangs in that area. But we’ll see.
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Rising CEA - What would you do?

Postby Claudine » Mon Oct 21, 2019 10:50 am

Fingers crossed heiders33!

NHMike -
He says that he gets really concerned when it gets into the high teens.
. That's interesting, I'd freak out at a much lower value! I suspect my husband's onc won't be too worried about the slow rise and will probably want to see if the trend continues; with treatment every two weeks it doesn't take long to get new CEA values. I'll call him when he gets back on Wednesday, though.
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rising CEA - What would you do?

Postby NHMike » Mon Oct 21, 2019 10:56 am

Claudine wrote:Fingers crossed heiders33!

NHMike -
He says that he gets really concerned when it gets into the high teens.
. That's interesting, I'd freak out at a much lower value! I suspect my husband's onc won't be too worried about the slow rise and will probably want to see if the trend continues; with treatment every two weeks it doesn't take long to get new CEA values. I'll call him when he gets back on Wednesday, though.


Well I did and he sensed that so he ordered a CT.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Rising CEA - What would you do?

Postby Claudine » Wed Oct 23, 2019 3:43 pm

Well, I did get to talk to the oncologist over the phone and he's not happy about CEA levels going up, despite recent good scan. He agrees with me that there's no point in continuing treatment (4 more rounds of Folfiri) if it's not effective anymore. Next appointment is on November 4th, at which point DH will probably get his infusion but his onc will bring up the rising CEA levels and request a scan so we get a better picture of what's happening... Gosh I'm tired of this roller coaster :(
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

stu
Posts: 1219
Joined: Sat Aug 17, 2013 5:46 pm

Re: Rising CEA - What would you do?

Postby stu » Wed Oct 23, 2019 3:56 pm

Thinking of You Claudine. It’s so tough on you both . Swinging in one direction with good news then anxiety rising in another . Hopefully the scan will remain good .
We had a scare last winter with my mum’s rising CEA . Two scans and still nothing showing them down it popped after six months with no explanation.
Rolling with the punches comes to mind .
Take care ,
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 .

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Rising CEA - What would you do?

Postby Claudine » Wed Oct 23, 2019 4:07 pm

Thanks for your kind words Stu, you always find a way to cheer us up! The point of the treatment is to shrink the adrenal gland some more before zapping it into oblivion (or removing it surgically)... While getting rid of what we can't see. I asked the onc what would happen next should the tumor not shrink any more - would the radiation/surgery still take place? Or would we look for a different systemic treatment? "There's no straight answer" was his, I guess we'll have to discuss it. Personally I think it would be nice to remove the damn thing, but some form of systemic treatment will certainly be required no matter what. Shhhhhhhh...
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)


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