What is your tumor marker (CEA)?

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gracelinedesign
Posts: 123
Joined: Thu Jan 17, 2013 8:50 pm
Location: York, PA

What is your tumor marker (CEA)?

Postby gracelinedesign » Tue Mar 08, 2016 8:41 am

My oncologist continues to tell me not to worry but I can't help it. I'm up to 63, highest ever and since I stopped chemo a month ago and only did 1 dose of Keytruda I'm super scared.
Stage IIa rectal carcinoma 05/22/12
5 weeks 5FU/Radiation
Resection / temp ileostomy 10/16/12 - zero LN
5 out of 8 5FU, 1 round of oxaliplatin
Ileostomy reversal 3/21/2013
11/15/13 lungs mets - 10 nodes - Stage IV
2 years of FOLFOX and FOLFIRI
3/2016 - Keytruda

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: What is your tumor marker (CEA)?

Postby vilca11 » Tue Mar 08, 2016 9:05 am

Grace, you know better - the trend matters, what was your CEA thru Folfox and before, when lung mets started? Are they amendable to laser or any other surgery, how big they are? Did you stop MJ? How onc arguments his "do not worry" - what is his expectations?
Calm down, sweetheart, and write more details here, please.
Hugs, vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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gracelinedesign
Posts: 123
Joined: Thu Jan 17, 2013 8:50 pm
Location: York, PA

Re: What is your tumor marker (CEA)?

Postby gracelinedesign » Tue Mar 08, 2016 9:18 am

Even though I should know better, I'm still nervous. It went down 10 points two months ago, then back up 10, now up 20. I'm still doing cannabis (via suppositories). I have 16 very small spots spread across both lungs, so not a candidate for surgery or radiation.

They did tell me that on Keytruda things can start to look worse as the 'spots' can look larger, but hopefully will get better. I think I will cry if I have to go back to FOLFIRI. It worked to keep the tumors from growing, but I was so sick.
Stage IIa rectal carcinoma 05/22/12
5 weeks 5FU/Radiation
Resection / temp ileostomy 10/16/12 - zero LN
5 out of 8 5FU, 1 round of oxaliplatin
Ileostomy reversal 3/21/2013
11/15/13 lungs mets - 10 nodes - Stage IV
2 years of FOLFOX and FOLFIRI
3/2016 - Keytruda

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: What is your tumor marker (CEA)?

Postby vilca11 » Tue Mar 08, 2016 12:44 pm

No, I understand that you are nervous, I was talking about the info you need to put down in the post for us to understand better what is going on... Anyone would be nervous in such situation... What about this surgeon in the UK/London who does the same laser surgery on multiple lung spots as Dr. Rolle in Germany? He is cheaper than Rolle, but same or better, from what our forum crowd mentioned at times... Costly, of course, but it may be worth to at least hear what he has to say - to send him a disk? From what it seems, Folfox did not do a good job on lungs... and we do not know if Keytruda will... I would send a disk while on Keytruda, not to lose time...
Hang in, may be our lung people have better input... Big hug, just do not panic, take some pills for that, in such situations we need to stay calm to make right decisions. lets wait for more input... Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: What is your tumor marker (CEA)?

Postby michellecairn » Tue Mar 08, 2016 12:50 pm

Gracelinedesign,

When I saw the drs at Northwestern University in Chicago, they told me to get on keytruda, and I was already had an appt scheduled to see if I could get on a clinical trial for it.

Anyways the Northwestern drs said that on the keytruda things can flare up, but then they will start to shrink and not to worry.

Best of luck to everyone!
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: What is your tumor marker (CEA)?

Postby GrouseMan » Tue Mar 08, 2016 2:04 pm

Looks to me that you have had some response to the Keytruda. The tumors and likely some lymph nodes will swell as the immune system kicks in and starts attacking the tumor cells. CEA is likely to go up a little also as the tumors leak CEA into the blood stream. You will have to give it a little more chance than just one dose! Hang in there. I know you can't stop the worry but try not too until you have a little more information. This immunotherapy is new to everyone. You might want to ask in the Keytruda thread of this forum where people are discussing their experience with this new treatment, and compare notes there. They might not come in and look at this CEA thread (After all we rehash that all the time).

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: What is your tumor marker (CEA)?

Postby tammylayne » Thu Mar 10, 2016 9:17 am

Hi Grace,,,I have no knowledge of this subject, but wanted to offer you support and a gentle hug...
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: What is your tumor marker (CEA)?

Postby Delinda2 » Thu Mar 10, 2016 10:31 am

I'm always amazed at the wide range of CEA numbers people have, and the point at which it changes. Mine has held pretty steady in the 3 to 4 range, even when a new primary was found about a month ago and I have a lot of pain. Yesterday I had my first chemo in 13 months and it was up to 7.4. Some people have huge numbers while others are low. Strange little beastie this CEA number we all wonder about. Just another piece of this confusing disease. Nothing showing on my scans, then BAM, a new primary in my sigmoid, as well as "nodularity" that still can't be identified as mets or possibly angry lymph nodes. Sometimes it all feels like a crapshoot.
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

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dianetavegia
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Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: What is your tumor marker (CEA)?

Postby dianetavegia » Thu Mar 17, 2016 4:07 pm

All studies say that anything over 10 indicates disease.

I questioned my onc as to why my CEA has never fallen below 2.1 when I see others with no disease whose are .8, etc. He said "Maybe you're just one of those people with a normally high CEA". That blew my mind, since the highest it ever was was 8.4 the day of my liver resection!

I have my blood work tomorrow. My CEA jumps all around between 2.4 and 3.4. Labcorp high norm for non smoking females is 3.9.

Did you know:
A larger (obese) person has lower CEA's than thin people (reasoning is because it is dilluted due to amount of plasma, etc)
CEA in people over 60 tend to run higher than younger people
Biotin found in hair and nail preps, if over 500 mg, can cause a false high CEA
CEA is elevated with any blockage and polyps. Studies are being considered to see if this includes constipation and hemorrhoids.
NON cancer patients over 70 can have elevated CEA's. A study was done in nursing homes on patients with no cancer. After death, autopsies confirmed NO DISEASE and no explanation for the elevated CEA.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: What is your tumor marker (CEA)?

Postby NateA » Sun Mar 20, 2016 8:22 pm

I personally blame any rise in my CEA on tumor death..hope that's what you are seeing as well!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

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gracelinedesign
Posts: 123
Joined: Thu Jan 17, 2013 8:50 pm
Location: York, PA

Re: What is your tumor marker (CEA)?

Postby gracelinedesign » Mon Mar 28, 2016 1:00 pm

Well just got home from receiving my 3rd treatment of Keytruda. Tumor marker is now 121. Trying to keep calm and hopefully that it is indeed an indication that my immune system is on the attack.
Stage IIa rectal carcinoma 05/22/12
5 weeks 5FU/Radiation
Resection / temp ileostomy 10/16/12 - zero LN
5 out of 8 5FU, 1 round of oxaliplatin
Ileostomy reversal 3/21/2013
11/15/13 lungs mets - 10 nodes - Stage IV
2 years of FOLFOX and FOLFIRI
3/2016 - Keytruda

Lund5505
Posts: 69
Joined: Tue Jul 08, 2014 1:37 am

Re: What is your tumor marker (CEA)?

Postby Lund5505 » Mon Mar 28, 2016 2:12 pm

When is your next ct scan. I would be worried to with a continual rise.

Hang in there I know it is really scary when your CEA starts to rise
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: What is your tumor marker (CEA)?

Postby Wonderfullymade » Tue Mar 29, 2016 8:35 am

Mine went down after the first couple of Keytruda, it went up a little the time before last...I have been afraid to check it this last visit. I have a scan in April that I have decided to wait and see what that shows. I have also been told things might get bigger before they shrink (although the I did have shrinkage on the first scan) and that inflammation can cause CEA to rise. My Onc doesn't put much into my CEA as he said it has never been a good indicator for me...
I understand your anxiety as I am having it too! Let's hold hands sister!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

Sanjay
Posts: 1
Joined: Fri Apr 21, 2017 5:52 pm
Facebook Username: Sanjay Dharmaraj

Re: What is your tumor marker (CEA)?

Postby Sanjay » Fri Apr 21, 2017 6:28 pm

My CEA was 48 before I started Keytruda and it dropped to 46 after the first treatment. After the second treatment it went to 111 and still waiting to see what the numbers are after the third treatment.

My oncologist is not worried but you always freak out when the CEA goes up. CEA goes up when you start Chemo, it goes up after Y90, so I am assuming it is normal with Keytruda too. We all have to wait and see.

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: What is your tumor marker (CEA)?

Postby NZJay » Fri Apr 21, 2017 7:35 pm

dianetavegia wrote:All studies say that anything over 10 indicates disease.

I questioned my onc as to why my CEA has never fallen below 2.1 when I see others with no disease whose are .8, etc. He said "Maybe you're just one of those people with a normally high CEA". That blew my mind, since the highest it ever was was 8.4 the day of my liver resection!

I have my blood work tomorrow. My CEA jumps all around between 2.4 and 3.4. Labcorp high norm for non smoking females is 3.9.
.


I share your mind boggling! Mine hasn't been below 4 as far as I can remember. And currently sits stable at 5.0ish.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection


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