CEA and hope

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CEA and hope

Postby Mohrfamily » Sat Jan 05, 2019 6:15 pm

So my journey with DH has been hard. We fight for everything in this life together and his cancer battle is no different. So I just want to put this out there according to the nurse practitioner working with our oncologist his CEA was the highest she'd ever seen being over 10,000. After 6 months of chemo and 5 and a half of those months with oxaliplatin in December his CEA was down to 69!

I know CEA isn't exactly reliable but given our situation I feel deep down those numbers mean something good something hopeful.

I'm constantly battling my head so many of you have given me hope some with lots of mets and one person who had said dozens of mets is surviving because of MSK. Why can't it feel this way from our doctors ALL OF THEM. Why should anyone feel the despair of am I watching them die? I don'tt ask it often because my faith/hope/strength comes from that question he is not going anywhere if we have to file bankruptcy in the process. Sometimes the despair I feel is so many patients go straight to surgery, some have many extra mets and favorable out comes what makes any of us different in the same situations? In that my husband could die while others very similar to his state go on?
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

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Re: CEA and hope

Postby LPL » Sun Jan 06, 2019 1:58 pm

WOW - to see CEA go down like that must be a good sign!
As I understand it for some people CEA is very good at predicting respons to treatment. I really hope/think that is true in your husbands case. Whishing you well !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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Re: CEA and hope

Postby Punky44 » Sun Jan 06, 2019 2:23 pm

From my understanding, it definitely sounds like your husband’s CEA is the kind that is a good predictor! My mom’s is as well, although on a smaller scale (went from an 18 to a 10 with 4 rounds of Folfox and scans show tumor shrinkage of 40%!).

For your husband’s to go from 100000 to 69 is surely a great sign!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
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
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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Joined: Sat Aug 17, 2013 5:46 pm

Re: CEA and hope

Postby stu » Sun Jan 06, 2019 4:53 pm

Fantastic update . So good of you to think of others .
You have both endured incredibly well.
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Re: CEA and hope

Postby ginabeewell » Mon Jan 07, 2019 12:24 am

That's amazing and has to be a great sign. I went from 931 to 49 to 4.6 and my doctors were calling the drops amazing and unbelievable response. The response you are citing is even better than that! I will say that CEA aside, I am still not resectable; but the figures are giving me faith that things are moving in the right direction.

I read the book Radical Remission and ended it feeling like, "why not me?" It was super uplifting and I would recommend it if you're feeling up against the odds.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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