My recent significant CEA jump.

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zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

My recent significant CEA jump.

Postby zx10guy » Wed Nov 06, 2019 4:57 pm

I've been reading through recent threads about CEA increases people have experienced. I waited to say anything as I was waiting on going through the entire gamut of tests. I also felt it would be good to have my own thread dedicated to this.

If you do a search on here, a while ago I put up a thread which discussed my CEA jump experience. Here's a quick recap of my situation up till now. In June/July of 2016, I experienced a jump of CEA from my normal baseline of just over 5 to 9.7. A retest was done and it came back at 11. CT and PET were done which showed nothing. A colonoscopy caught a polyp in my appendix. After a right hemicololectomy, pathology came back as the polyp having cancer so I was officially stage 0 appendicial cancer. This was deemed a new primary from my first cancer diagnosis of colon cancer stage 3b. Two subsequent checkups showed my CEA to drop back down to 5.4.

In March of 2017, I went for another 3 month checkup and to our surprise my CEA jumped to 15.6. A retest to rule out lab error came back at 16.7. These tests were done: CT/w contrast, PET, MRI of small bowel/abdomen, upper GI endoscopy, small bowel capsule endoscopy, and colonoscopy. None of these found anything. Over the next couple of years my CEA bounced between 11 and 20. With CTs along the way showing clear. Last year in Oct, I went for another checkup and my CEA jumped from 17 to 26. My doc thought it was some issue with their new lab and just had me come back in 6 months for another checkup. April of this year, CT is again clear but my CEA is 28.6. My next checkup is scheduled for last month, October.

This is where things fell off the rails. I get my CT done and it comes back clear. I get my CEA done.....52.6. I'm in total shock. So is my doc. He orders a retest which comes back at 51.9. I forgot to mention I had a colonoscopy done in September which found 3 benign polyps. Here we go again. He orders an MRI of my abdomen with a focus on my liver. That comes back clear. So a PET/CT was ordered. I just had it done today. All clear. So not sure what is causing my CEA to be so high. But this will be coming up on 3 years since my CEA has been way above normal.

My doc thinks it may be due to all the recent stress I've been under. And there might be something to it. Around March 2017, I was really starting to have some severe marriage issues. In October of 2018, was a few months after my wife moved out and we were officially separated. I was also having visitation issues with our daughter. The recent spike was after about a year of now having officially filed for divorce along with litigation over child custody and then the actual divorce. So if this is all related, I really need to de-stress.

As a side note, last year I was diagnosed with a heart condition involving my aorta. Shortly after my separation, I developed high blood pressure.

So I go back to see my doc in December to do another CEA test to see where things are. By all accounts I should be symptomatic or have something pop up on any of the scans I've had. But so far I'm clear with only this blasted CEA being off. But it seems I may be able to declare myself 7 years NED next month from colon cancer. I have been 3 years NED from appendicial cancer.

If this holds up, I think some papers should be written up about me. So far I have found one person who has had a wilder CEA ride than me who went 5 years with her CEA above 60. I downloaded the medical journal paper on her case. I can provide a link to some online websites which has the medical paper published if anyone is interested.

radnyc
Posts: 404
Joined: Tue Apr 06, 2010 6:32 pm

Re: My recent significant CEA jump.

Postby radnyc » Wed Nov 06, 2019 5:21 pm

Wow! Just reading your story stresses me out. My CEA has lived between 5 and 10, for 10 years, and no cancer has been found after numerous radiographic studies, CT, PET. Yes, if it’d jump to 60 it’d freak me out! It’s hard not to think about and I wish there were another simple blood test for those of us with abnormally high numbers. Stress, definitely can alter not just CEA but affect our health in a variety of negative ways. In fact I read somewhere that just the waiting for the blood to be drawn at the hospital can raise the level. People have had cea tests done as part of other blood tests, and not know about it, and the cea level has come in lower than when they are actually aware that the test is being done. The mind/body connect goes deep. Stay strong.
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

zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

Re: My recent significant CEA jump.

Postby zx10guy » Wed Nov 06, 2019 5:52 pm

Thanks radnyc.

Yes, things have been real tough for me for a while. Another stress I left out was I changed jobs twice during this crazy CEA period.

Something I forgot to mention which popped up on my 4 recent CT scans was a lesion in my liver. It was classed as a granuloma. It first appeared when my CEA jumped from 17 to 26. I've been reading some about granulomas as a possible source for CEA elevations. Also another possible factor is my long term use of Excedrin (mainly acetomenophin). With all the stress I've been going through, I have not been sleeping regularly or restfully and have had daily headaches for months. To keep me functioning, I've been taking at least one Excedrin pill daily if not multiple. It's only been the past couple of weeks I've been able to break the daily cycle of taking Excedrin. I have taken some Excedrin here and there but it's only been a couple of days total. Wonder if there has been some side effect with my long term consumption of acetomenophin that is affecting my liver's ability to process out CEA.

Brearmstrong
Posts: 87
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: My recent significant CEA jump.

Postby Brearmstrong » Wed Nov 06, 2019 6:48 pm

Have they ever mentioned doing a laparoscopic look around? I say this because appendix cancer is often undetectable on PET, MRI and CT scans as it often causes tiny specks of cancer covering organs. Too small to be seen on scans yet CEA can be elevated. Not saying it to be alarmed but just hoping they can cover all bases and give you peace of mind.
45 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017 lung 4mm, clean CT oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19

zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

Re: My recent significant CEA jump.

Postby zx10guy » Wed Nov 06, 2019 8:51 pm

I some times wonder about this too if there is peritoneal spread. But being over 3 years out from my appendix cancer and it being stage 0, I'm just going to roll with the assumption this isn't the situation I'm dealing with.

heiders33
Posts: 358
Joined: Sat Nov 04, 2017 11:08 am

Re: My recent significant CEA jump.

Postby heiders33 » Thu Nov 07, 2019 7:40 am

Thanks for posting this. My CEA keeps going up (see my other thread) and they think they see recurrence at my original surgical site, but my colonoscopy a month ago was clear so I still wonder. I have been working in a stressful job, although that's not near the amount of stress you've experienced. Something to ponder.
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

zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

Re: My recent significant CEA jump.

Postby zx10guy » Thu Nov 07, 2019 9:43 am

heiders33 wrote:Thanks for posting this. My CEA keeps going up (see my other thread) and they think they see recurrence at my original surgical site, but my colonoscopy a month ago was clear so I still wonder. I have been working in a stressful job, although that's not near the amount of stress you've experienced. Something to ponder.


Your thread was where I was going to post this but I didn't want to distract from your current situation. I put this up exactly for people such as you who are dealing with CEA increases. As you can see, I've been living with this CEA nightmare coming up on 3 years now. I have to admit when my CEA jumped from 5.4 to 15.6 in 3 months I did freak out. Especially thinking about the situation of having to deal with a recurrence and all the personal issues I had going at the time. Over time, the shock of my CEA fluctuations lessened as my CEA would typically drop after a jump. This time things are different as there has been a significant climb and no corresponding drop. So yeah, I was in a bit of a panic these past few weeks.

I won't get too much into this as it's very controversial. But one of the things which I did was get back in touch with my faith on a deeper level. Just something to think about.

Claudine
Posts: 165
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My recent significant CEA jump.

Postby Claudine » Thu Nov 07, 2019 11:46 am

This is crazy! I hope you get answers soon - the good kind, like some weird factor beside cancer is causing the spikes!
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 at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

Re: My recent significant CEA jump.

Postby zx10guy » Thu Nov 07, 2019 5:55 pm

Thanks Claudine.

I don't know what my doctor thinks now with my recent CEA being as high as it is. He did bring up all the stress I've been under and that could be a contributor to why it's so high. But before my CEA shot up to 26 and beyond, he felt my then high CEA was not cancer related. He said with my CEA being as high as it was for as long as it has been I would have shown some symptoms. Which I haven't. He also said with my CEA bouncing all over the place would indicate it's not due to cancer. Now with my CEA at 51.9, not sure if he still think it's not cancer related. But he did bring up the stress thing on his own. Plus we've already done all the tests possible short of doing exploratory surgery which I think is too extreme.

I've been living with this roller coaster coming up on 3 years now. Had all of this been condensed into a year, you bet I'd be bouncing off the walls. But it has been close to 3 years now with nothing showing up yet. I also point to the article I mentioned of the Taiwanese woman that had even higher CEA levels that was tracked for 5 years with nothing showing up on her CT scans. The thing that makes my situation a bit different than hers is I had a PET scan done. She didn't due to her nationalized insurance system refusing to pay for a PET scan.

boxhill
Posts: 387
Joined: Fri Apr 06, 2018 11:40 am

Re: My recent significant CEA jump.

Postby boxhill » Thu Nov 07, 2019 7:27 pm

I don't think you mentioned any thoracic scans. have they looked at you lungs?

You really have been through the wringer. I hope things stabilize.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

Re: My recent significant CEA jump.

Postby zx10guy » Thu Nov 07, 2019 10:58 pm

boxhill wrote:I don't think you mentioned any thoracic scans. have they looked at you lungs?

You really have been through the wringer. I hope things stabilize.


Yes. All my CTs with my current oncologist are chest, abdomen, and pelvis CTs. The MRI I had done did not look at my thorax/chest. The PET I had done went from my skull all the way to my mid thigh. So yeah, my lungs have been thoroughly looked over. My oncologist might have ordered for the MRI to be done on my lungs had there been any indication of something questionable there. My lungs have been clean ever since I started this wretched journey Dec. 2012.

But thank you and yes I've been through the proverbial wringer. If my CEA doesn't return back to normal and I continue to have clean scans, this will show that the doctors still don't know enough about CEA; especially since there is another person who has gone through the same thing I have but with even higher CEA numbers.

zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

Re: My recent significant CEA jump.

Postby zx10guy » Thu Nov 07, 2019 11:09 pm

Here's a link to the medical article talking about that Taiwanese woman who had extreme spikes with her CEA numbers yet did not develop any signs of cancer after 5 years of monitoring:

https://academic.oup.com/jjco/article/36/12/811/874390

It appears you can also download the article in PDF format from that web page. The only thing that wasn't done for that woman which the doctors wanted to do was a PET. A PET wasn't done because the nationalized health care system in Taiwan refused to pay for it. Which meant the lady had to pay out of pocket which she wasn't willing to do.

For my situation, I filled in that missing piece of the puzzle as I did have a PET done along with an MRI that she had done looking at the liver.

I've searched around and there have been a handful of other medical articles which reference this case. But I'm surprised there hasn't been more research and discussion of this very unique case. I'm surprised I was even able to find this article as it was very obscure and buried by the mountain of other articles talking about main stream CEA cases.

Nikan1
Posts: 2
Joined: Sun Sep 08, 2019 12:50 pm

Re: My recent significant CEA jump.

Postby Nikan1 » Fri Nov 08, 2019 11:39 am

Hi ,

I understand your stress very well, when my mother’s CEA spiked to 40 just three months after finishing chemo, your post saved me from nervous breakdown ! Now I hope I can help you to calm down.my mom was diagnosed with stage 3b rectal cancer(recto sigmoid junction ) in July 2017.After first spike in CEA she had a full CT scan with contrast,it was clear, in two weeks her CEA jumped to 73, then to 90 !!!! A pet scan ,endoscopy and colonoscopy was ordered, nothing was found.She had all kind of possible blood works to find a reason, again nothing was found.It came down little by little during a one year period, without any treatment.for last two months it is stable at 1.9,so your significant spike can be a false positive too.

When cancer was found ,her CEA level was 1.8.Doctor said CEA is not a good marker for her, now after all that happened I don’t know what to think.

radnyc
Posts: 404
Joined: Tue Apr 06, 2010 6:32 pm

Re: My recent significant CEA jump.

Postby radnyc » Fri Nov 08, 2019 2:10 pm

The search is on for a superior testing method based on individual tumor DNA, which is the way to go. I found this quote from Dr. Axel Grothey, a well known oncologist at the Mayo Clinic:

“ Dr. Grothey says he considers CEA to be a valuable surveillance test, but that research into better tests is ongoing. “The future of ‘tumor markers' lies in the determination of circulating tumor DNA, preferably based on a mutational analysis of the resected primary tumor to follow patients with this highly sensitive technology to see if they have evidence of minimal residual disease,” he says.”
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

Amarie123
Posts: 39
Joined: Wed Nov 14, 2018 6:46 am

Re: My recent significant CEA jump.

Postby Amarie123 » Sat Nov 09, 2019 9:42 am

CEA can apparently spike for a number of non cancer related reasons. A friend of mine has been cancer free for 7 years but her CEA was always up and down. She gets recurrent bronchial and sinus infections which her docs at Dana Farber think could be the cause. They have stopped monitoring her CEA because of this and instead use other bloodwork as a marker (I don’t know what tests they use).
In my experience, the only jump in CEA I had was after radiation and the highest is went was 12. With my original tumor and the new ones, my CEA remains in the normal/low normal range. It’s not a good marker for many people.


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