Intro, and please give your feedback

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ginabeewell
Posts: 295
Joined: Wed Oct 24, 2018 10:30 am

Re: Intro, and please give your feedback

Postby ginabeewell » Fri Aug 16, 2019 10:12 pm

TinaFish wrote:Can I ask you guys about CEA? How much weight does it carry? With mine being 22 last month and 11 now, I'm very confused because I've seen some signatures on this forum with CEAs in the triple digits. The fact that mine is low... I know that's a good thing, but what is the relevance?


CEA is useful but really only in comparison to your own numbers. Some people start in the thousands (or tens of thousands) and some much lower - but it doesn’t mean that a lower score is better in absolute, you can’t compare across people, you can only consider how your own numbers rise or fall. And for some, it’s not a good indicator at all; but if you started at 22 and have gone down, seems like it should be for you.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Jacques
Posts: 497
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Intro, and please give your feedback

Postby Jacques » Fri Aug 16, 2019 10:28 pm

TinaFish wrote:Can I ask you guys about CEA? How much weight does it carry? With mine being 22 last month and 11 now, I'm very confused because I've seen some signatures on this forum with CEAs in the triple digits. The fact that mine is low... I know that's a good thing, but what is the relevance?

Since your CEA is going down while you are under treatment, it probably means that CEA is a good marker for you.

When you get rid of all of your liver and lung mets, as well as all of the cancer in your rectal tumor and in the local lymph nodes, your CEA should fall below 5 ng/mL. Meanwhile, your CEA is now at 11, which probably means that there is still a significant amount of cancer still in your body.

Here is some info on CEA. (Please note that CEA is a three-letter acronym and the search engine here will not search for it because searches here always require keywords with at least 4 alphanumeric characters.)

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60075&p=476909#p476909

TinaFish
Posts: 174
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Fri Aug 16, 2019 11:21 pm

Thank you for everything
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Jacques
Posts: 497
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Intro, and please give your feedback

Postby Jacques » Sun Aug 18, 2019 2:37 pm

TinaFish wrote:... Finally ...she scheduled me for a scan on the 26th...

For your scan on August 26th, what I would suggest is for you to bring a copy of your June 7th scan report along with its CD-rom so that the radiologist can make a technical comparison between your June 7th scan and the current one before writing his/her report.

Edit:
I would also suggest that you ask the scan center how you can get a duplicate copy of your August 26th scan report and the scan's CD-rom. This is for purposes of getting a second opinion if you ever want to do that. At my facility, they will print off an extra copy of the scan report at no charge and create a duplicate CD for about $5.

There are many radiology departments around that will do CT scan second opinions for a fee, but they need a copiy of the original report and a copy of the original CD-rom. Here's one example:
Radiology Consultation Service
Our Radiology Consultation Service provides official reading for exams performed at facilities outside UCSF. To take advantage of this service, your medical provider must complete a requisition form and submit the form with your CD or X-Ray films to the UCSF Radiology Library.
Reference:,https://radiology.ucsf.edu/patient-care/for-patients/radiology-library-patients


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