CEA and hope

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Mohrfamily
Posts: 81
Joined: Tue May 22, 2018 4:04 pm

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 officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.

User avatar
LPL
Posts: 559
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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 pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Punky44
Posts: 224
Joined: Mon Oct 01, 2018 4:29 pm

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 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
Completed 8 rounds of neoadjuvant Folfox 11/5/18 - 2/11/19
Current CEA 6.2

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

stu
Posts: 1028
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.
Stu
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 .

User avatar
ginabeewell
Posts: 119
Joined: Wed Oct 24, 2018 10:30 am

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 (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (round #6), FOLFOX hold the Vectibix (for 1 round)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow


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