CEA

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Mohrfamily
Posts: 170
Joined: Tue May 22, 2018 4:04 pm

CEA

Postby Mohrfamily » Wed May 15, 2019 10:12 am

I apologize if this thread is active already but I did a CEA search and returned nothing even though I vaguely remember putting something out there previously.

So DH has been fighting are for 1 full year. His CEA was the highest (unreadable) a 30 year veteran nurse had ever seen. After a few months that number dropped and dropped. Its lowest has been in the 50s he's back up in the 90s and I keep trying to tell myself its because he was forced to take a break from all chemo in order for 2 surgical spots to heal (mole removal NOT CANCEROUS & toenail removal due to chemo causing ingrowns)

I've suggested he talk about a new colonoscopy since its been a year since his last but for obvious reasons is reluctant. How often should he get colonoscopies? Needing a little encouragement today.
DH dx officially stage IV with liver mets largest 6x6.4 cm
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.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

Tdubz
Posts: 144
Joined: Sun May 07, 2017 11:01 am

Re: CEA

Postby Tdubz » Wed May 15, 2019 9:24 pm

I was told to get a colonoscopy every year for 5 years. His oncologist or gastroenterologist should be able to tell him the frequency he needs to get them at.

Wewillfight
Posts: 12
Joined: Sun Mar 03, 2019 5:27 am

Re: CEA

Postby Wewillfight » Thu May 16, 2019 4:00 am

I don't believe a colonoscopy is needed.

From what you are saying, He is having lots of scans? He has active tumours which are being treated by the chemo.
40 y/o
Diag Nov 2016 stage IIIc, surgery, colostomy, 2 lymph involved
6 months FOLFOX
NED
Nov 2018 recurrence , surgery , some spread to pertineum
Jan-June 2019 Folfiri+Cetux
Clear scans
August 2019: small bowel inflammation, partial blockage symptoms

Pyro
Posts: 294
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: CEA

Postby Pyro » Thu May 16, 2019 9:12 am

I as told 1 year after colectomy, after that was complete and clean, I was told 3 years.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

User avatar
juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: CEA

Postby juliej » Tue May 21, 2019 6:12 pm

Mohrfamily wrote:So DH has been fighting are for 1 full year. His CEA was the highest (unreadable) a 30 year veteran nurse had ever seen. After a few months that number dropped and dropped. Its lowest has been in the 50s he's back up in the 90s and I keep trying to tell myself its because he was forced to take a break from all chemo in order for 2 surgical spots to heal (mole removal NOT CANCEROUS & toenail removal due to chemo causing ingrowns)

I've suggested he talk about a new colonoscopy since its been a year since his last but for obvious reasons is reluctant. How often should he get colonoscopies? Needing a little encouragement today.

If he's been off chemo for awhile, it's only logical that would cause a rise in his CEA. So you're right about that.

As far as a new colonoscopy, generally those are not done while a patient is in active treatment unless there's a strong medical reason. So get him back on chemo and I bet those CEA numbers start coming down!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

Mohrfamily
Posts: 170
Joined: Tue May 22, 2018 4:04 pm

Re: CEA

Postby Mohrfamily » Thu Jun 13, 2019 10:24 am

CEA reports came back was 92 back down to 64!
DH dx officially stage IV with liver mets largest 6x6.4 cm
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.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

AmyG
Posts: 258
Joined: Tue Dec 25, 2018 8:08 pm

Re: CEA

Postby AmyG » Thu Jun 13, 2019 12:40 pm

Hey that's great!! How's he feeling? I'm currently in the waiting room to get disconnected from cycle 4. Getting my CEA drawn Monday after next for the start of cycle 5. Really excited to see if my number is continuing to drop.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

User avatar
juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: CEA

Postby juliej » Thu Jun 13, 2019 6:03 pm

Mohrfamily wrote:CEA reports came back was 92 back down to 64!

Yes! Yes! Yes! :D :D :D
Doing the happy dance for you!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

Mohrfamily
Posts: 170
Joined: Tue May 22, 2018 4:04 pm

Re: CEA

Postby Mohrfamily » Fri Jun 14, 2019 4:45 am

AmyG wrote:Hey that's great!! How's he feeling? I'm currently in the waiting room to get disconnected from cycle 4. Getting my CEA drawn Monday after next for the start of cycle 5. Really excited to see if my number is continuing to drop.


In an attempt to "protect" me and the kids he doesn't show a lot of emotion outwardly. I mean he doesn't hide it as well as he thinks but ... Men. I would not say he's fit as a fiddle but he's not laying in a puddle of doubt/pain. I couldn't be prouder to be his wife he fights so hard he's taking vectibix at 100% covered in the painful itchy acne it causes but won't stop taking it because the fight in him is serious he actually will talk crap to his liver.

Amy, my husband had an unreadable CEA at the beginning a year ago higher than 10,000 and he's down to 65. Its fathers day weekend and I plan on celebrating big!

Thank you as well Julie!
DH dx officially stage IV with liver mets largest 6x6.4 cm
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.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

Claudine
Posts: 124
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: CEA

Postby Claudine » Fri Jun 14, 2019 10:11 am

AmyG wrote:Hey that's great!! How's he feeling? I'm currently in the waiting room to get disconnected from cycle 4. Getting my CEA drawn Monday after next for the start of cycle 5. Really excited to see if my number is continuing to drop.


I hope it does, same for your husband Mohrfamily (10,000?!? That's crazy, I didn't know CEA levels could get that high!). Our experience so far with CEA levels has been an asymtotic curve drop - a lot at first, then more slowly; but levels are still dropping and since there's still a good size tumor present, I'm not surprise that we haven't reached the "below 2" magic value. I'm always super nervous when I log in after the test results get back (worried that numbers will have crept back up) but so far so good :)
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2,
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)


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