CEA jump from 2.8 to 33 in 6 weeks -- what to make?

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hopefulandstrong
Posts: 42
Joined: Fri Apr 19, 2019 7:11 pm

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Postby hopefulandstrong » Mon Sep 09, 2019 2:21 pm

Thank you all so much!

So much wisdom here.

For what it's worth, here is where I am today. Having scans on Wednesday -- I requested and I think my ONC understands that my hyper-vigilance is probably why I'm still alive and so doesn't want to fight it.

Having said that, I came to RADNYC's conclusion over the weekend: as long there are active tumors, there's going to CEA activity, and there could be a bunch of reasons for it bouncing around -- everything from lack of exercise to gum disease to stress to being off the anti-biotic I was taking for my rash, which also functions as an anti-inflammatory. It's not very likely that a treatment that worked so well for 10 weeks would suddenly stop working five weeks later, and I'm not expecting see anything dramatic on these scans. However, even if it has stopped working, and we do see, say, progression, it's not a catastrophe. It's just knowledge that informs the next steps.

What I'm learning through this journey is that it really is a long game -- hopefully a very long game. But even if it turns out to be shorter than I hope, it's really helpful to think of this in terms of steps. A friend who is also a survivor recently told me that he doc told him that it's like the train in Harry Potter: when you run out of one track, you get on another one.

I'll keep you posted -- but mostly wanted to share the mental thing, because that's a big reason we're all here, I think.

XX
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

Claudine
Posts: 121
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Postby Claudine » Tue Sep 10, 2019 10:01 am

Those are really good words, HopefulandStrong, I love your attitude!
DH's CEA levels appear to be steadily rising, albeit slowly - but I don't like that trend, of course. Still, they're still low and like RADNYC pointed out, when there are still tumors there's bound to be CEA activity. DH's next scan is on Monday so hopefully we'll know a bit more. His onc isn't too concerned about the slow rise and wants him to continue Folfiri/Avastin for another 6 rounds...
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 - Krohn's disease)
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, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2,
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

hopefulandstrong
Posts: 42
Joined: Fri Apr 19, 2019 7:11 pm

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make? - Update

Postby hopefulandstrong » Thu Sep 12, 2019 5:17 pm

So --

Good news, we found out fast. Bad news. There has been progression. Larger lesions in the liver and one hot lymph node just outside the liver.

Not what I was hoping for. My local doc thinks it makes sense to do another biopsy. It's really, really, rare for this stuff to stop working so fast. He says he's seen mutations mutate into something else. Has anyone here had that happen?

Thanks.
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

NHMike
Posts: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make? - Update

Postby NHMike » Thu Sep 12, 2019 5:29 pm

hopefulandstrong wrote:So --

Good news, we found out fast. Bad news. There has been progression. Larger lesions in the liver and one hot lymph node just outside the liver.

Not what I was hoping for. My local doc thinks it makes sense to do another biopsy. It's really, really, rare for this stuff to stop working so fast. He says he's seen mutations mutate into something else. Has anyone here had that happen?

Thanks.


One of my coworkers was diagnosed with Non-Small Cell Lung Cancer a few months before I was diagnosed. They did a biopsy and had a targeted treatment for it so he went on that and the tumor shrunk by 50% but stayed at the same size. The tumor was inoperable. A year later, the tumor started growing and they did a biopsy and it had mutated. They expected the mutation, though, and they had another drug for that mutation. A year later and he had some concerning symptoms and they found spread to the spine with some loss of function in the lower body. I believe that this is another mutation. He is undergoing radiation therapy right now. I'm not sure if he's also doing chemo.

I have read some papers where there are secondary mutations. Most people with CRC probably don't know if there's another mutations as most don't get tested for the exact mutation so they don't know if it's changed.

I do not recall anyone on this board getting additional mutations though I do recall a few people with multiple mutations.
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

AmyG
Posts: 258
Joined: Tue Dec 25, 2018 8:08 pm

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Postby AmyG » Thu Sep 12, 2019 5:34 pm

1. Holy shit, that sucks.
2. I'm so glad you pushed for a scan and caught it.
3. Really hoping they find a way to kick this in the ass.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

hopefulandstrong
Posts: 42
Joined: Fri Apr 19, 2019 7:11 pm

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Postby hopefulandstrong » Sun Sep 15, 2019 8:53 am

OK -

So I'm both frustrated and hopeful. Turns out the the PIK3 mutation, which I have in addition to BRAF, can make the Erbutix not work. Newsflash -- Targeted therapy needs to actually target what actually going onwith you! This is the second time I've had to figure this out. WTF!!!

Good news, there is some work being done on a treatment for PIK3. The bad news is obvious. Anybody out there have an experience with this?
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

natelaugh
Posts: 70
Joined: Wed Apr 03, 2019 11:40 pm

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Postby natelaugh » Tue Sep 17, 2019 6:06 pm

Hi,

My dad recently got a cea test. It increase from 7.1 to 12.1. The only thing that we differently was did a x-ray on his back and change his leucovorin with sugar to salt. We switch back to what work. Current doing leucovorin with d5 or sugar.

I think his x-ray had cause his cea to go up too. Do anyone know if x-ray or ct scan or using leucovorin with salt cause cea to increase? I
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


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