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Rising CEA

Sestra17's picture
Sestra17
Posts: 42
Joined: Jan 2018

Hi all! When I was diagnosed was given "possibility" of cure with full treatment. Chemo/radiationX6weeks, surgery (laparascopic assisted APR), and followup chemo Oxaliplatin and 5FU pump for 4 months. Did all that. May CEA 3.8, down from 4.7. Last CEA 4.0. Research shows if CEA doesnt normalize after surgery it is highly suspicious for metastatic disease. Contemplating stopping all further surveillance testing. The whole past year was wasted, missing events with family due to neutropenia. And now have neuropathy in hands and feet that keeps me from participating in much, especialy riding horses and playing piano. I feel further treatment would adversely effect my quality of life. Anyone else in this boat?

abita's picture
abita
Posts: 656
Joined: Dec 2017

Not exactly the same, my cea levels are fine, but post chemo scans show spots that are most likely cancer. I too was "curable ". I am no longer curable. But I too feel like the months on chemo after I had to switch from oxaliplatin to irinotecan was a complete waste of time. I am getting a pet scan to see how bad it really is before getting a treatment plan.

Annabelle41415's picture
Annabelle41415
Posts: 6241
Joined: Feb 2009

Have you had any recent scans?  CEA isn't always a good indicator so I'd wait to see what the next scan shows.  Have you discussed this with your doctor and brought up your concerns?  It sounds like you should have a clearer indication of what your doctor is thinking as well.  I'm thinking that you are still in the normal range and many factors can make a fluctuation as well as different labs.  Wishing you the best.

Kim

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  The only difference is my CEA was 1.3 when they found the tumor.  I guess for some of us the CEA isn't too good a gauge for determining level of spread.  I think it has to do with how old the cancer is. Mine was stage 3 rectal cancer and the CEA stayed at 1.3 even after the four months of follow up chemo.  My chemo was Xeloda versus 5FU.  I've got another CEA test due next month.  Am I nervous? You bet and Iv'e got neuropathy as well in my feet and hands.  My thing isn't horse riding.  My icon gives it away and having perfect finger control for arrow release is an absolute must.  That is, if there is any hope of winning a match. Don't have that anymore and to add insult to injury my right arm rotator cuff is hosed so even if I could let the arrow fly correctly I can't pull more than 30lbs at most. So, I'm done. In all honesty I'd rather have this instead of the alternative, being dead.  

  We can always find new hobbies to satisfy that competitive spirit which is something I'm looking into. I'm still able to get around and some of the other side affects are beginning to subside.  I don't have to wear depends as of last week which was strange in that from one day to the next my bladder seems to have fixed itself. Same goes for number two.  I've been off chemo since May1 and my strength is slowly coming back. Started out not being able to do even one push up in May and today I can do 13. It's not a lot but to come back from being beaten down like I was I'll take it anyway I can get it.    

 I can walk for a couple miles without getting tired which has taken a month to get up to.  Before this started I could walk all day up hill and down without any fatigue. First time I tried it a month back I was shocked at how little I could do without huffing and puffing.  That is, if I didn't piss myself walking down the driveway. A lot has changed since then.  At first I was so depressed thinking my life was over because I had little to no control over bodily functions. I think exercise has a lot to do with recuperation except for the neuropathy.  Maybe that will improve, who knows.

  Point is, don't stop getting checked and stay active no matter how difficult it may seem at first.  The oncologist told me way back when that I had about a 50/50 chance of recurrence.  That changed to a 20% possibility based on the blood work and so forth towards the end of treatment.  When I go in next month for a CEA test and October for a PET scan I'm hoping for improved numbers.  Whats the worst that can happen is what I tell myself.  That I have cancer.  Been there done that.  

plsletitrain
Posts: 253
Joined: Jul 2017

...because I stopped relying on the CEA.  I just now rely on scans because my CEA test is an out of the pocket expense and when I had a lung met my CEA was still within normal.  I believe you should still do active monitoring such as taking the routine scans to see how's it going.  Better caught early than.... (just my unsolicited advice).  

Twinzma
Posts: 216
Joined: Jan 2018

Please don't feel that you wasted time with treatment. My husband was told six months tops without chemo, He still is in treatment only a couple scheduled and goes for his PET scan. If he had not done it his expiration date was May. He has since seen his boys finish 6th grade, enter the 7th, has seen one join the ROTC has caught the biggest fish of his life, has reunited with an estranged family member, wrote off toxic ones. He enjoyed an entire summer poolside and boating. He has seen our resident deers have fawns and wathched them grow. A lot of things he would have missed out on. Find those things and focus on the joy you have found not the illness & side effects. Life is precious and any time spent on refelcting on what should have, could have, would have is the real waste of time, not the time you spent fighting for your life. 

CEA can change due to many factors not nesscessarly from spread. Until the pictures come up you wont know for sure what is going on. So try to hold tight and stay positive. Whatever decisson you come to after that, then fly with it, never ever look back. You will make the right choice. Hugs! 

zx10guy
Posts: 210
Joined: Dec 2013

.2 change in your CEA number is not significant enough to call it a rising trend.  Your CEA can vary by that much or a bit more even if your blood was tested at different times on the same day.  There's no need to panic at all.  Even with a 1 point rise, many times there isn't a need for concern.  It's the trend over time which doctors watch to determine if there is indeed an issue.

Also, you need to find out if the lab you're using is doing the Bayer Siemens or Roche assay tests.  Both have different upper limits of what is deemed as normal.  With the Roche test which many labs are moving to your 4.0 number is well within the normal range.

I had two CEA tests done last year both about a week apart.  The second test had an almost 6 point drop (not 0.6)  from the first test in that time period.  I'm not under any active treatment right now so my CEA just dropped by itself.

I don't want to minimize your fears/anxiety as they are very real for you.  But to me this is a bit of an over reaction.  You're in a better place than me as I've been dealing with CEA reading in the teens for over a year now with nothing coming up on scans.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

My nnumbers after surgery were (roughly 3-4 weeks apart): 1.7, 2.2, 2.2, 2.6, 2.7, 2.8, 2.8, 3.2, 4.5, 2.8. My oncologist was surprised at the spike as things went parabolic. The overall numbers weren't that high (3.8 is the limit for normal). He ordered a CT scan which came out clean and then the number dropped back to normal levels. The higher numbers and the spike were coincident with higher activity levels - I charted CEA against activity levels and the graphs were very similar. So it appears that increased exercise can affect CEA. I was walking over 100 miles per weak at the peak.

The oncologist said that he starts to worry when it's over 20 and he's only had one patient that had a recurrence through adjuvant chemo.

So your numbers aren't really worrying (though it's very hard not to worry).

I also have neuropathy - and it's a lot worse in the toes than the fingers. It seems to have gotten a little worse in the toes after chemo. I am hoping that it declines over time.

 

Sestra17's picture
Sestra17
Posts: 42
Joined: Jan 2018

all for the reassuring coments. Appreciate you taking the time to respondSmile

Coachjim
Posts: 15
Joined: Dec 2016

Exercise, instense exercise, can cause a bit of inflammation and inflammation can cause an elevated CEA.

My friend on another forum is NED Stage IV for about 6 1/2 years and was diagnosed originally well over 9 years ago as Stage III.  Last year her CEA went from 2.7 to 3.4 to 5.something.  She had read a paper on hypothroidism and it said it could increase CEA because when the thyroid is messed up, the liver doesn't break down or degrade CEA.  She had her TSH tested and her numbers were double high normal.  After 6 months on thryoid medication, her CEA went down by over 50%.  CT/ MRI scans have been clear since her liver resection in early 2012. 

It's not always cancer and false positives are quite common.  

 

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