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CEA up a little... concern???

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Greetings

I had a blood test on Monday, and received the report today.
my CEA level over the past year went from 65 down to 8, then down to 2, then down to 1.6 which was about six weeks ago. (after 24 weeks of Folfox6 & Erbitux)

this week is week 12 of the Xeloda/Avastin... and my CEA level today is up a little bit.
it went from 1.6 to 2.0 in six weeks.

do you think I should be concerned?

thanks

Joe

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Hi Joe,
The question is, how do you feel? I say don't get caught up in the numbers if you feel great. That's the downer about scans and tumor markers. We can feel great but as soon as we get a less than what we perceive to be a positive result, we go into panic mode. What did your Doc say? Personally, I would be thrilled with a 2. But then again my CEA is 100. Started at 33 about two years ago, dropped to 1 a year ago, shot up to 209 in September and now it's down to 100. I feel great though. So the question is, how do you feel :-)
Take care,
Ron

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

i feel pretty good... not as good as i did 3 weeks ago, but 12 weeks into these treatments i think i'm having some chemo build up side effects.

plus my goal when i started this stuff 12 weeks ago, was to make it to Dec 6th without a stop so i can get the CT scan.

i'm making the goal... but my mind is kicking in full gear and my hand and foot problems continues to get worse.

overall though, i feel pretty good.

so, thanks for the advice.

love this CSN site more and more.

Lovekitties's picture
Lovekitties
Posts: 2989
Joined: Jan 2010

While the CEA can be a good indicator, as yours seems to be for you, it can also be impacted by other things.

A one time very small increase like yours does not seems to be concerning by itself. Most docs don't have concerns uless there is an upward trend over multiple tests or a drastic upward number.

For now, put the worries about it aside and enjoy the holidays.

Wishing you the best,

Marie who loves kitties

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

thank you Marie

i really appreciate your words.

hugs

Chelsea71
Posts: 1170
Joined: Sep 2012

No Joe. I wouldn't worry about a two. It's normal for it to fluctuate a bit. So many factors can affect it. Put it out of your mind for now. I get it though. I tend to obsess over every little number. I think in your case it's fine. Anxious to hear about your scan results.

Take care,

Chelsea

tanstaafl's picture
tanstaafl
Posts: 1003
Joined: Oct 2010

It's not statistically significant. Hopefully just noise, would need a lot more tight CEA data points, or perhaps other biomarkers. When we see stuff we don't like, we double check chemo modulation opportunities like dose of PSK, cimetidine, aspirin/COX inhibitors, vit C, D3, K2, and the various Life Extension Foundation recommendations, A, B, C.

One can also estimate relative Xeloda activity from a series of MCV data in the CBC tests.

Brenda Bricco's picture
Brenda Bricco
Posts: 559
Joined: Aug 2011

Dennis' doc told him many things could cause a rise in CEA, chemo being one of them. I hope all is well.
Brenda

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

At this point, I wouldn't be overly concerned. A "normal" CEA is anything 3 and under, so a 2 is basically normal. Also keep in mind that when cancer cells die off it can create and elevated false high reading. From what I've heard, these tests cannot tell the difference between a live cell and a dead one so at a 2 you could have actually dropped so that half of those are dead cells. As Miss Kitty mentioned this is something that needs to be trended to tell if it's an anomaly or something of concern. My onc told me that while we should have some concern, we shouldn't worry until three consecutive elevated readings. Finally, remember that the CEA is ng per mL. That's a billionth of a nanogram per milliliter.

I hope that this helps.

Doc

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

thanks Doc.

your post is very helpful.

a billionth of a nanogram per milliliter.

now, there's three words I never thought I'd put into one sentence!

thanks so much for your help.

I have a better attitude this morning... after ready these posts and after a good nights sleep.

thank you to everyone on this blog post.
not sure what i'd do without the help i get from this place.

Joe

swimmer22
Posts: 53
Joined: Oct 2011

Joe-- I wouldn't worry as you are still within the "normal" range for CEA. Mine does move up and down within the normal range from month to month and my oncologist said that is fine and to be expected.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Thank you Swimmer22!!!

I really appreciate your note.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Happy to oblige, Joe. I'm just glad that we could all help to put your mind at ease. You're a big inspiration on this board with your upbeat attitude. Stay the course, bro.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

if i were in your position i would be concerned and smiling.....
but remember i have been psychologically and physically challenge by the cancer and still am. but i have put to much effort in to let the little ***** out of the bottle.

i would still enjoying everyday but taking obsessive and expensive action, would you expect me to take anything less.

rising cea levels, like i had for a dam year, almost to this day, freak me out. now i have found a few therapies that can reduce cea without chemo i would be back in the clinic's up to my eyeballs in infusions and tests.

so i would be on a plane to germany, but i am already here.

the strategies i would use is removab for liver, peritoneal and systemic stem cells.
and then dendritic cell to target the possibility of any lung mets.

from redoing the rgcc tumour profiles this can guide targetted infusions, i would also do this brand new immune system test where they pull your lymphocytes apart and can tell if you have active disease. from the very first cea rise, so stuff waiting 3 months to see if you got a trend. i would also good the full range of tarvalin tests to see if i am a pet false positive kind of guy as well as the tktl1 protien marker that indicates ketogenic diet would work for minimising this tumour growth. i would supplement the ketogenic diet with map, to minisise cataketic muscle loss. i would exercise and meditate and reduce stress and maximise enjoyment. even if it meant finding a new girlfriend overseas.

i had a year of cea rises and a few falls. the rises were like 10 points or 20 points and the falls were like only 1 point and of course clear scans until you got big enough tumours to see on a ct. really good pet, mri primovist and angio ct and liver ultra sound is what i would fall back on.

a different hypothesis. the concise version.
assume the worst and get a treatment plan to cover it.
the greatest risk is its the beginning of the end based on multidrug resistance.
you can test your tumour stem cells to see if they have that characteristic.
then it could be continued cea rises until treatments fail.

at some point our tumours work around vegf inhibitors, the chemo's and we are in a steady decline.

just a few options I would do, if i get into this mess again. i will never trust and relax and trust my oncologist and just sit back and grow that tumour, hoping it will be operable. in my current case, the cancer returned in the peritoneal cavity which sux.

the serious advantage of trying the range of therapies I am using now and have tried over the last year is strategy. its strategy, strategy, strategy.

I can always come home and do hardcore chemo and blow my sox off, if these alternatives fail to deliver, and rest assured i will do that. but my strategy is to use therapies that offer the best quantity and quality of life.

these therapies only exist in germany, that i have found, so thats where i am. they cost serious money. so say budget at least 200K USD for a year. if it works for me, i have proven the immune system can win. hypothetically if it works for you well you have added another interesting example to our csn colorectal community. The money i am investing, is in targetted colorectal cancer research, to save my life. but it establishes a path, albiet expensive, that i feel offers some hope and potential.

if the personalised approach works for enough of us, then maybe our government and oncologists will learn alot quicker than they would have otherwise. they are all delayed by profit and political correctness. but their are many willing volunteers, i have met them over hear. guess what, they are all alive with stage 4 and still beating the odds without chemo.

if i had the money and the disposition i would say its time to learn german. i suspect germany lost world war two, world war three was not nuclear, but cancer and the germans won it because they have a history of holist medicine. even as we speak big pharma in germany is shutting down hyperthermia and making practice difficult for oncologists and naturopath treating cancer differently.

you know my story, parts of it, i know this reply may cause some upset and frustration for some. but this is only my opinion about what i would do in a similar situation.

often my dear friend, where their is smoke , well their is fire. thats what happened in my case and i have a big fight, many of us here do also. i wish i was here a year earlier after the first cea rise. if only i knew then what i know now. but that is living in the past. in my books hoping the rise is die off or caused by inflamation or all the other possible causes of cea rise is just wishful thinking. wishful thinking that could be costly.

I repeat, that pete does not want to upset or rock the boat, but if what I am doing actually is a viable alternative and i failed to share my insights and experience then I would not be the human I am trying to be. this is my version of tough love, joe. so just think about what i have written and good luck and peace with whatever you decide regarding treatments.

hugs,
Pete

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Thanks Pete!

I do appreciate you and your notes and ideas.
I agree with so many, and unfamiliar with so much... but I like the challenge.

I'll be doing my homework...

you know what's crazy?
Over the past year, i do have some thoughts and spend a little bit of time putting things in place for my wife and four kids. Such things as updating the will the trust and the college funds to make sure all four kids get what I want them to have, even if i'm not here.

I'm doing pretty well after one full year, but stinkin' thinkin' can get to a guy. And, my preparedness is how i'm tightly wound in the first place. But, as i read your post... i thought... WHAT IF... What If i took money for me, no instead of planning for Them later?

anyway, i have a scan in a couple hours and these next 24 hours should tell me a lot about what's going on. thanks for your notes, your passion and for sharing.

yes, i understand that others on this blog have shut you down in the past... or have slapped your hands, but I like this outside look at this stuff.

I always say.... thanks for Being U!

U B U

thanks again.

joe

PatchAdams
Posts: 272
Joined: Nov 2011

My CEA jumped a little less than that last test and I was very concerned. A colon cancer (Stage IV) patient of 15 years, who happens to be a PHD in lab research wrote and told me he tested his CEA every day for years, TWICE a day and he could draw two tubes at once or one tube twice a day and the results were never the same even with him running his own test. I believe he said his varied by .5 every day.

BTW, locally Lab Corp has a normal reading of up to 3.9 for a non smoker. My onc said he is required to use different labs for different insurance companies and even he gets confused.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Patch.

your post is very helpful.
thank you

Joe

PatchAdams
Posts: 272
Joined: Nov 2011

Found his exact quote:

SamT responding to a thread like this. Sam has a PHD in Chemistry and (at the time of that thread) had graphed his CEA for over 5 years. He tested his own CEA weekly using Siemen's and said he did 2 tests from one vial of blood each week and every test was different by + or- .4, every week. He said the margin of error is 10% or more and that such a small change is really NOT a change at all.

Hooley's picture
Hooley
Posts: 156
Joined: Aug 2012

Hi joe

dd u have any leg, buttock pain from erbitux ?   I have this plus acne?  Not sure if leg is siatica or what.  Panadol settles it fr some hrs

sue

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