Overworried ?

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626Patient
Posts: 7
Joined: Sun Mar 17, 2024 1:28 pm

Overworried ?

Postby 626Patient » Sun Mar 17, 2024 1:37 pm

Hello!

I've been a long time browser and first time poster.

My mom was diagnosed back in July 2022 Stage 4 with spread to both liver and lung. Since then she's been getting regular infusion over at a local hopsital and surprisingly has had little to no side effects. Unfortunately the first two medications she was on had mixed results. The very small tumors in the lungs are well controlled but the Mets in her liver had a few that shrank by a few MM and some grew by a few MM. So last August her doctor switched her to Vectibix and my goodness that medication actually shrank the liver mets by 40-60 percent. Her CEA also dropped from around 300+ August 2023 to 4.6 as of Feb 2023. However her most recent blood work showed her CEA jumping back up to 5.9 which has me worried. Someone please tell me I'm thinking too much. We were used to the CEA dropping everytime so this one jump starts making me wonder what's going on. Her oncologist said this is a normal flucation and a CT scan is really the best way to determine what's going on. Her next scan is set for the end of this month. Any support / guidance would be much appreciated!

zephyr
Posts: 369
Joined: Thu Aug 18, 2016 7:31 am

Re: Overworried ?

Postby zephyr » Mon Mar 18, 2024 2:51 pm

For now, in the absence of more information, I suspect you're thinking too much. While a rise in CEA is always on our radar, trends over time are more important than a single test because CEA is influenced by so many things, not just cancer.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

626Patient
Posts: 7
Joined: Sun Mar 17, 2024 1:28 pm

Re: Overworried ?

Postby 626Patient » Mon Mar 18, 2024 3:12 pm

Thanks! I was thinking the same thing as well. We've been so used to the numbers falling 30-40 percent at a time that this increase got me a bit worried.

Also is it common practice for CEA to be measured every other time labs are done ?

626Patient
Posts: 7
Joined: Sun Mar 17, 2024 1:28 pm

Re: Overworried ?

Postby 626Patient » Mon Mar 18, 2024 6:03 pm

** not sure if my first post went through **

But thanks for your response ! We’ve been really spoiled seeing CEA drop 30-40 percent since August 2023 so when we noticed the CEA went up from 4.7 to 5.9 we were a bit shocked.

Also the app says a CEA lower or equal to 4.9 is within normal range. Is that accurate ? Aside from that all blood work has been within range since original diagnosis.

User avatar
ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Overworried ?

Postby ANDRETEXAS » Wed Mar 20, 2024 12:51 am

From the Cleveland Clinic........

"What is a normal CEA level?
CEA is typically reported in nanograms per milliliter (ng/mL). The reference range is 0-2.9 ng/mL of blood. Generally, healthcare providers consider typical CEA levels to be between 0 and 2.9 ng/mL. Research indicates that false-positive results are reported with concentrations as high as 35 ng/mL.

Different labs may have slightly different references ranges and clinicians may consider higher thresholds depending on the individual circumstances.

What levels of CEA indicate cancer?
There’s no magic number or threshold for a CEA test that points to cancer. Healthcare providers don’t use the CEA test to screen for or diagnose cancer. In general, a CEA level of more than 2.9 ng/mL is considered abnormal but doesn’t necessarily mean that cancer is present."

My motto is take one day at a time. Since there will be another scan at the end of the month, you'll get a more definitive result. Try to relax until then. All the best........... Andre

P.S. CEA was not a good indicator for me from the time I was diagnosed.
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

User avatar
Green Tea
Posts: 461
Joined: Mon Oct 24, 2016 10:48 am

Re: Overworried ?

Postby Green Tea » Wed Mar 20, 2024 7:44 am

CEA Testing
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=63762&p=500464#p500464

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58961&p=465102#p465102

    The CEA is measured in the blood and the normal range is <2.5 ng/ml in an adult non-smoker and <5.0 ng/ml in a smoker. The most common cancers that elevate CEA are in the colon and rectum but it can be elevated with gastric, ovarian and other cancers. The CEA test most often used for post colon cancer treatment surveillance and is likely to be replaced with ctDNA over time.


    Source :
    https://news.cancerconnect.com/colon-cancer/understanding-the-cea-test-in-colon-cancer
Last edited by Green Tea on Thu Mar 21, 2024 7:34 am, edited 1 time in total.

626Patient
Posts: 7
Joined: Sun Mar 17, 2024 1:28 pm

Re: Overworried ?

Postby 626Patient » Wed Mar 20, 2024 8:35 am

Thank you all for your words of encouragement! Will keep you updated at the end of this month!

Xenia
Posts: 1
Joined: Mon Mar 11, 2024 4:10 pm
Facebook Username: Xena nia

Re: Overworried ?

Postby Xenia » Sat Mar 23, 2024 10:03 pm

Thank you for posting this! super helpful!

626Patient
Posts: 7
Joined: Sun Mar 17, 2024 1:28 pm

Re: Overworried ?

Postby 626Patient » Fri Mar 29, 2024 2:17 pm

So... we just got back from the doctor's appointment. The amazing news is 4 out of the 5 tumors in the liver shrank a lot... 20-30 percent. However, 1 went from 11MM to 17 MM. Oncologist is recommending that radiation be used on that specific tumor. He mentioned success rate being fairly high and is very confident about this procedure. Since we've never had raditaion done before, anything we should be concerned about? Side effects, pain , etc? Overall we are ecstatic with the scan results. Thanks for listening and have a great weekend!

zephyr
Posts: 369
Joined: Thu Aug 18, 2016 7:31 am

Re: Overworried ?

Postby zephyr » Fri Mar 29, 2024 8:48 pm

In my experience, radiation is a piece of cake. I had SBRT, a kind of pinpoint radiation, and I assume it will be the same for your mother. Mine was 5 sessions. It took longer to change clothes and get everything prepped and started each time than it did for the treatment. No pain, no burns, no anything really. My SBRT treated a tumor in my lungs so I don't know if it's different for the liver. There are lots of really helpful people here and I'm sure someone else will chime in shortly. CONGRATS to your Mom on the scan results!
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

626Patient
Posts: 7
Joined: Sun Mar 17, 2024 1:28 pm

Re: Overworried ?

Postby 626Patient » Fri Mar 29, 2024 10:26 pm

Thanks Zephyr for your feedback! I just reviewed the doctor's summary and he is also recommending SBRT for my mom. He did mention she'll still get chemo and then radiation the following week (2-3 times). Were you on both chemo and then radiation or just radiation alone? Hopefully she'll have little to no side effects with the exception of the prep time + change of clothes. :) Have a great weekend!

626Patient
Posts: 7
Joined: Sun Mar 17, 2024 1:28 pm

Re: Overworried ?

Postby 626Patient » Fri Apr 12, 2024 2:16 pm

So we finally met with the radiation oncologist who specializes in SBRT but after looking at the scan he think mom may be eligible for Radio Frequency Ablation. However the doctor who does this procedure is out on vacation. With that being said, any pros / cons to either method?


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