Scared that my father is stage IV colon w/liver metastasis

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Sakkurt
Posts: 5
Joined: Sun Sep 30, 2018 7:47 pm

Scared that my father is stage IV colon w/liver metastasis

Postby Sakkurt » Thu Oct 04, 2018 8:27 pm

Hi,
I cannot describe with words how relieving to read the posts. I am so scared and cannot stop crying since I learned. Everyone is great and so supportive.

My father has been diagnosed stage IV colon cancer with inoperable liver metastasis. I am from Turkey, (but used to live in NY) and all the doctos said that he has not much hope left. Everyone said that we should contact with MSK, NY. I contacted them, and sent all the reports and results, and they accepted him as an International patient. He is 62 yo. He started with FOLFOX, will get 3 cycles and CT scan after. The thing that panicked me at Sept 9, is his CEA level was 676,5 ng/mL (thats why he had colonoscopy, and CT, and PET/CT...and learned the cancer.
On sept 28, that took us almost 3 weeks to complete the scans and the reports that the hospital asked to accept our case, hic CEA is elevated to 1951.54 ng/mL (which i was shocked) and even 5 days later (october 3rd) his CEA level is 3033.8 ng/mL and this all before the chemo.
I am reading all kinds of researches and forums but couldnt find any data/forum about extremely high CEA. I am so worried, and so upset. I think I am writing just to share and find relief, or listen other similar stories and learn better. Thank you everyone even for reading, as sharing this was even a relief for me.

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

Re: Scared that my father is stage IV colon w/liver metastasis

Postby Punky44 » Fri Oct 05, 2018 12:15 am

I feel the exact same way—scared and can’t stop crying everytime I think about this. My mom had a colonoscopy on Monday and cancer was confirmed Wednesday..still waiting for CT scan results and I have been praying so hard for them not to be dire. Everyone here has been so great and patient with my endless questions and freak outs. I am really glad I found this place at the beginning of this journey. Hoping the best for your dad and glad he got into what seems like a great place.
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.

dliu
Posts: 66
Joined: Sun Jun 03, 2018 7:16 am

Re: Scared that my father is stage IV colon w/liver metastasis

Postby dliu » Fri Oct 05, 2018 5:10 am

I'm sorry that you're both here - I'm in a similar situation and all I can say is from my experience CEA are bound to go down if the treatment works successfully. My mum's CEA at the start of chemo was in the 6000+. Now down to 400 after seven cycles. From what I've read about very elevated CEA levels, it is relatively normal with liver mets.

It is still a long journey for all of us, but CEA won't be the be all and end all of it. Just keep an eye on it going down, and that should be some good news, at least.

Wishing you all the best on the start of treatment, and wishing your father as few side effects as possible.
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

Sakkurt
Posts: 5
Joined: Sun Sep 30, 2018 7:47 pm

Re: Scared that my father is stage IV colon w/liver metastasis

Postby Sakkurt » Fri Oct 05, 2018 7:22 am

dliu wrote:I'm sorry that you're both here - I'm in a similar situation and all I can say is from my experience CEA are bound to go down if the treatment works successfully. My mum's CEA at the start of chemo was in the 6000+. Now down to 400 after seven cycles. From what I've read about very elevated CEA levels, it is relatively normal with liver mets.

It is still a long journey for all of us, but CEA won't be the be all and end all of it. Just keep an eye on it going down, and that should be some good news, at least.

Wishing you all the best on the start of treatment, and wishing your father as few side effects as possible.


Thank you so much for sharing your story. Because the doctors don’t explain many thing (as they are right on their perspective) it is very relieving to hear that CEA won’t be the end of it. Just a question as I am really new to this disease, is it normal to elevate this much in such a short time? Or does it mean it metastasis is spreading agressively. I’ve been reading all kinds of studies, thesis, and blogs, but cannot find any data of such high CEA. Thank you so much for your post, and taking time to reply this long.

dliu
Posts: 66
Joined: Sun Jun 03, 2018 7:16 am

Re: Scared that my father is stage IV colon w/liver metastasis

Postby dliu » Fri Oct 05, 2018 11:07 am

Sakkurt wrote:Thank you so much for sharing your story. Because the doctors don’t explain many thing (as they are right on their perspective) it is very relieving to hear that CEA won’t be the end of it. Just a question as I am really new to this disease, is it normal to elevate this much in such a short time? Or does it mean it metastasis is spreading agressively. I’ve been reading all kinds of studies, thesis, and blogs, but cannot find any data of such high CEA. Thank you so much for your post, and taking time to reply this long.


I am afraid I don't have an answer to this as we didn't have CEA measured before we got the one when we started chemo, and I haven't been able to find an answer online. I haven't found anything relating to what you say either, though (that it might be linked to the aggressiveness of the disease), so that is probably good news.

Other people on this board might be more knowledgeable on the subject.

Good luck with everything
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Scared that my father is stage IV colon w/liver metastasis

Postby O Stoma Mia » Tue Jan 29, 2019 12:43 am

Sakkurt wrote:... I’ve been reading all kinds of studies, thesis, and blogs, but cannot find any data of such high CEA...

I would like to point out one thing with respect to searching for CEA posts on this forum. On this forum, the Search function will not search for any three-letter words or any three-letter acronyms. This includes things like CEA, HAI, MRI, PET, MSK, etc., etc.

There are indeed some posts and threads here that deal with high CEA, but to find them you have to use a different approach.

Below is a post containing links to various CEA posts of all kinds between 2005 and 2015. In this post there are some links to threads that deal with very high CEA. You can scroll through this list until you find them.

This list was not created by using the default Search function here. It was created by other means.

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

Sakkurt
Posts: 5
Joined: Sun Sep 30, 2018 7:47 pm

Re: Scared that my father is stage IV colon w/liver metastasis

Postby Sakkurt » Wed Apr 17, 2019 4:50 pm

O Stoma Mia wrote:
Sakkurt wrote:... I’ve been reading all kinds of studies, thesis, and blogs, but cannot find any data of such high CEA...

I would like to point out one thing with respect to searching for CEA posts on this forum. On this forum, the Search function will not search for any three-letter words or any three-letter acronyms. This includes things like CEA, HAI, MRI, PET, MSK, etc., etc.

There are indeed some posts and threads here that deal with high CEA, but to find them you have to use a different approach.

Below is a post containing links to various CEA posts of all kinds between 2005 and 2015. In this post there are some links to threads that deal with very high CEA. You can scroll through this list until you find them.

This list was not created by using the default Search function here. It was created by other means.

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


I realised I forgot to thank you. Thank you so much for the info.


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