To test or not to test?

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Rock_Robster
Posts: 1028
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

To test or not to test?

Postby Rock_Robster » Wed Jan 02, 2019 12:58 am

Given I have some time, I thought I’d ask some opinions. I’ve just had my 4th round of neoadjuvant FOLFOX and am due to have a CT next week to assess response or stable disease, and proceed to liver surgery (fingers, everything
crossed).

I asked my oncologist about blood marker testing too (mainly CEA) and he said he wouldn’t recommend it as it’s too early - if it’s up he would just attribute it to the recent chemo and push on, and if it’s down we just feel good and push on. He is a big advocate of only testing when it’s going to drive a decision or change a treatment. He did say he would do it if I insisted though.

I’m more of a data guy and think generally more info is better, but after the rollercoaster so far I’m beginning to come around to his way of thinking.

Views welcome! Thanks
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: To test or not to test?

Postby Punky44 » Wed Jan 02, 2019 1:20 am

Hmm..my mom gets her CEA tester before every round. For her, it’s thus far been a good indicator. When she was first diagnosed, it was a 17. They retested right before her first treatment and it was an 18. It has since gone back down to 17, then 15, then 12 and now 10 right before her 5th round. That “trend” gave us hope that the Folfox was doing its job and we just got her scan results back that her tumor has shrunk by 40% since the first 4 rounds!

That being said, if it hasn’t been tracked biweekly, one reading now might not mean much. For some, CEA seems to progressively decrease like my mom’s. For others, it can “flare” on chemo as the tumor is breaking up and giving off more of the protein. The only meaningful data is the trend line over time.
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.

Rock_Robster
Posts: 1028
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: To test or not to test?

Postby Rock_Robster » Wed Jan 02, 2019 1:27 am

Thanks Punky, congrats and great news about your mum! Glad the marker was useful for you too.

I should add that he’s not opposed to using blood markers at all - he’s actually one of the leading Australian researchers into ctDNA testing and will definitely be using it at the appropriate time. He is just very selective about when tests get done - he’s more focussed on “decisions” than “hope” :? (also recognising it may not be good, and just cause unnecessary anxiety).
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

User avatar
betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: To test or not to test?

Postby betsydoglover » Wed Jan 02, 2019 10:03 am

When I was on chemo, I had blood work every session - which included CEA. My CEA has never been greater than 0.9 and yet still we test every 6 months, and I am 13+ years out from diagnosis and 9+ years out from being NED the second time. One important thing about CEA is that the trend really matters - if you don't test, you can't see a trend. Since CEA is in no way an invasive test (you'd be having blood drawn anyway), it seems there is little downside to testing. I'm with you - the more data the better.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18


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