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Cea going up but still normal range

jen2012
Posts: 1607
Joined: Aug 2012

Can I say its been a really shitty day or is that a no no on the crc board?

Hubby had blood work last week and I kept myself from asking the nurse for the # because we were celebrating the babies 2nd birthday and I didn't want to think about it. Ive spent all day today trying to get my mom in to a short term care facility and the rules are so frustrating. Why did I choose today to ask about CEA when I'm already stressed. Of course it went up again...to 1.9. Surgeon and onc say no worries...how nice to be able to say that and go on with their day. I know its still normal range but why is it going up? Are the back issues causing Cea rise...or is the cea rise indicative of something else going on that is causing to cea rise?

I trust you guys more...if you say no worries I think I'll feel better. I feel like we should push for a pet scan but I don't know..had a Ct in August..pet last march. Any thoughts?

jen2012
Posts: 1607
Joined: Aug 2012

I guess I could say that...good to know.

Also he hasn't been asking me to check on the cea level...not sure if I should tell him it went up or not. I'm thinking I need to put my trust in the docs and stop asking about it.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

If there are other things goon then then I will look at CEA. It is a good tool to confirm. Have a blessed day. Jeff

jen2012
Posts: 1607
Joined: Aug 2012

Jeff- thanks so much for taking the time to reassure me.  I appreciate it!

mom_2_3
Posts: 965
Joined: Nov 2008

Jen,

I listed below all my CEA numbers over the past 4 3/4 years.  You can see that they have fluctuated.  I have been NED since 2/20/09.  I hope this helps alleviate all of your fears.  My doctor has told me that on any given day my number can fluctuate and that you really need to take the numbers over a period of time to show any trend.  Granted, if my number jumped from 2.8 to 9.8 I would freak out but you are talking about a small change in the number in your case.

HTH,

Amy

PS  My last reading beginning of September was 2.8 again.

5/20/2013 3.2 ng/ml
3/25/2013 2.8 ng/ml
1/28/2013 3.0 ng/ml
12/3/2012 2.8 ng/ml
10/8/2012 2.7 ng/ml
8/22/2012 2.9 ng/ml
6/25/2012 2.6 ng/ml
5/2/2012 3.3 ng/ml
3/5/2012 2.7 ng/ml
1/9/2012 2.2 ng/ml
11/28/2011 2.5 ng/ml
10/19/2011 2.0 ng/ml
9/26/2011 2.6 ng/ml
8/8/2011 2.7 ng/ml
6/13/2011 2.4 ng/ml
4/18/2011 2.5 ng/ml
3/7/2011 2.4 ng/ml
1/24/2011 2.1 ng/ml
12/13/2010 2.3 ng/ml
11/1/2010 2.3 ng/ml
9/20/2010 2.4 ng/ml
8/9/2010 2.2 ng/ml
7/12/2010 2.5 ng/ml
6/14/2010 2.6 ng/ml
5/10/2010 2.5 ng/ml
4/26/2010 2.6 ng/ml
4/12/2010 2.6 ng/ml
3/29/2010 2.3 ng/ml
3/10/2010 2.4 ng/ml
2/22/2010 2.1 ng/ml
2/8/2010 2.2 ng/ml
1/25/2010 2.3 ng/ml
1/11/2010 2.8 ng/ml
12/28/2009 2.8 ng/ml
12/14/2009 3.2 ng/ml
12/2/2009 3.2 ng/ml (WTF!! Scared me to death!!)
11/18/2009 2.5 ng/ml (First reading after last chemo treatment)
11/2/2009 2.2 ng/ml
10/26/2009 2.2 ng/ml
10/12/2009 2.2 ng/ml
10/5/2009 2.5 ng/ml
9/28/2009 2.5 ng/ml
9/14/2009 2.1 ng/ml
8/31/2009 2.4 ng/ml
8/24/2009 2.6 ng/ml
8/17/2009 2.7 ng/ml
8/3/2009 2.2 ng/ml
7/20/2009 2.4 ng/ml
7/13/2009 2.5 ng/ml
6/29/2009 2.0 ng/ml
6/15/2009 2.5 ng/ml
6/1/2009 2.5 ng/ml
5/18/2009 2.4 ng/ml
5/4/2009 2.6 ng/ml
4/28/2009 3.1 ng/ml
4/20/2009 3.6 ng/ml
4/6/2009 3.7 ng/ml
3/23/2009 5.6 ng/ml (CEA did normal half life/per 2 weeks)
3/9/2009 11.8 ng/ml (after treatment 5 and liver resection 2.20.09)
2/9/2009 102.7 ng/ml (after treatment 4)
1/26/2009 164.0 ng/ml (after treatment 3)
1/12/2009 270.5 ng/ml (after treatment 2)
12/8/2008 318.7 ng/ml (after treatment 1)
11/19/2008 283.6 ng/ml (blood test before first treatment)

 

jen2012
Posts: 1607
Joined: Aug 2012

That helps Amy...thank you. I don't know how those of you that have been at this for years can stand the anxiety. Drives me crazy at times!

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tanstaafl
Posts: 1299
Joined: Oct 2010

It is a continued CEA percentage rise that is more important. Noise in the CEA data, tyically +-0.5 or more, and rate of overall change, control how close the points can be taken, usefully.  I believe we are able to reduce CEA noise to below +-0.2, in the 2-10 range, by reducing inflammation with IV vitamin C, anti-inflammatory supplements, and using one lab with current equipment.  As a practice, we automatically get copies of all data asap.

 

Often others' datapoints are too widely spaced in time, say 3 months apart if something is active. Doctors just often just quote the "normal" range.  This practice will shaft those who have cancer, but are still in the low CEA range.  Closer spaced data can be more sensitive, but you have to deal several possiblities, along the lines of "Is a tumor coming in or going out (necrosing)" if CEA rises for a month, or two or three, unkown yet whether it will peak.  For stage IV, we typically test CEA 3-5 weeks apart, 14 days or less if there is some pressing question, to produce a high resolution dataset, with better answers sooner, still in slow motion.  We also use several kinds of biomarkers.  Whether you can avoid extra stress and make good, timely use of the extra data, increases its value.

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Tans

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Sundanceh
Posts: 4408
Joined: Jun 2009

EVen with chemo....so maybe some cancer cells dying as the rise is up, but not  jumping throuigh the roof...

 1.9 is enviable Jen......even with a slight rise....I tend not to even get concerned as long as its in normal range....we know cea fluctuates for a variety of reasons, many of which aren't even cancer.

Even at 121 I'm not hitting the roof....I suppose part of you just really stops caring as the years go on...

Sorry about your mom....I went through hell with my dad and all of the rip off associated with "care."  It really is tough on the caregivers...and the money is outrageous if it turns into a nursing homew situation......it was 5K every month that way......it was a blessing to get to the hospitals to get a discounted rate.

I wouldn't worry about this right now....I didn't even want to know CEA for the first time....Kim did.....so I appeased her....and wish I had left the email result unopened. 

Sometimes, we just press for too much, too fast....

jen2012
Posts: 1607
Joined: Aug 2012

I know, I know Craig...I shouldn't have posted.  I know that we are lucky that he has responded well to chemo and was even able to have surgery...it's just causes me so much anxiety and when other things are on my mind, it's all too much.   I guess it bothers me more that it is going up each time - if it was fluctuating up and down I don't think I'd be so worried, but between the rising number and all of the pain he's had, I worry that something is happening.

Hopefully my mom will just be in the care facility for 2 or 3 weeks and medicare should pick up the tab - I was glad to finally convince her.  She has been in and out of the hospital more than a dozen times since last December and she is just not strong enough to be home.   My father has his own medical issues and can't do much to help her.   She's such an amazing and strong woman - she's been on dialysis since she was in her early 40's and has never complained.  To hear her cry every single time I talk to her over the last couple of months is just sending me over the edge.  Hopefully the stay will help her regain her strength. 

Thanks Craig - I'm thinking of you every day and hoping you will soon be feeling well to spend more time here with us.

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traci43
Posts: 775
Joined: Jul 2007

Jen - You've got a lot on your plate and a small rise in CEA could be nothing.  Hard to know.  For me a PET Scan doesn't show a thing unless my CEA is 7 or 8 or higher.  I would relax and see if there is a continuing trend before asking for another scan.  Good luck to you as you work things out for your mom.  Traci

jen2012
Posts: 1607
Joined: Aug 2012

Hi Traci - thanks!  I see you posted your results - off to read hopefully good news!

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Phil64
Posts: 837
Joined: Apr 2012

Jen,

 

CEA is somethiing I have tracked closely as well.  My CEA history is on my blog at http://pscamihorn.me/cea-history/.  My Onc said that the CEA will fluctuate (preparing me for changes now that I just finished chemo (last treatment was on 9/27).  He said he will not be concerned with changes unless it doubles a few times. And he also said that he has had patients CEA go up and they remained NED with high levels of CEA.  It is a marker and sometimes it doesn't correllate with cancer for some patients.  And if it does correllate it is useful because it will prompt for aggressive scanning and earlier detection.

 

Wishing you, me, and everybody on here a Happy and Joyful weekend. 

God Bless,

Phil

Blog: http://PScamihorn.me

 

 

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sdp
Posts: 181
Joined: Jan 2012

I would be concerned if the CEA and CA 19.9 went up twice the value before or atleast after the reading taken two tests before - push for a ct-pet 

 

my CEA was normal and hardly increasing by a point or two - and suddenly after a month and a half it had tripled - doc says may be nothing - pushed for a immediate ct- pet and I had a 2.5 x2.5 cm met in the liver which In the MRI after a week was 3.2 x 3.4 and the doc says that at the time he treated me ( nanoknife/ IRE ) it was close to 4 plus cm - total time from ttraceable result to the table when I was treated was approx 12 days max .

so I would probably rush - if it had been more than 5 cm than probably he wouldn't have performed the IRE - the procedure took 4 plus hours instead of the anticipated 2 hours and had 7 holes rather than the 4 holes he talked about after the looking at the pretreatment MRI thspray before the procedure - had also Done a contrast ultrasound - that showed 3.2 cm met .

maybe it depends from person to person but then why delay and take the chance - resection in my case would be the second resection in span of one year from the last resection - the recovery would be atleast two months and painful - so I guess I was lucky that my recovery was three days after the procedure 

Chelsea71
Posts: 1170
Joined: Sep 2012

It's amazing how fast those liver mets can grow.  I agree time is of the essence when it comes to the liver.  But, that is a really low CEA.  Even if there is something brewing, would it show up on a scan with only 1.9 CEA?

Jen - I can tell by your posts that your feeling desperate.  I would be too.  I don't think there is anything to worry about right now.  But I do think he is in a crucial place at this time.  I know he doesn't want to go to Sloan.  His ability to not let the cancer run his life is commendable. Having said that, he doesn't know what we know.  He likely hasn't spent literally hundreds of hours on line researching this stinking disease.  He hasn't spent hundreds of hours on CSN learning about other peoples cancer experiences.  We know how quickly things can spiral out of control.  He has a lot of opportunity right now.  A big shot oncologist may be able to make recommendations that could hugely affect his future.  It sounds like he is comfortable with his current doctors and feels everything is fine.  He likely wants to take a wait and see approach.  His doctor is telling him that everything is normal, and he trusts her.  We all know that just because a doctor says everything is okay doesn't necessarily mean that everything is really okay.  I really hope you can convince him to have a consultation with a big cancer ceter like Sloan.  Even though the cancer has invaded his lymph system I think a smart treatment course right now could keep him NED for the years to come.  I realize money is tight and it's probably not a great time to do a trip to the big apple.  It could make a huge difference.  Even if the  Sloan onc agrees with your current onc, it would be nice to have the peace of mind.  It's sad but unfortunately we just can't trust that our doctors know that what they are doing is the right thing for us.  They're opinions vary so much.  It's not straightforward.  Now is the perfect time for a second opinion.  You don't want to be sitting where I am now sitting and thinking we should have done this or tried that.  Have no regrets.

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Chels...you get me!  And you are right, he doesn't know what we know because he refuses to read or even talk about things I read.  The only thing he listened to is when I was telling him about the dendritic cell trials. 

I have the paperwork to send all his stuff to Sloan for pathology to look at but I'm not sure if an oncologist or surgeon also review or if that would mean a visit.  I've actually been looking for a house rental near NYC for a long weekend and hoping we can work that in to our getaway.

I hope you aren't having any regrets.  Steve would not want that I'm sure.  You researched and read so much and did so much - please don't go there Chels...

jen2012
Posts: 1607
Joined: Aug 2012

Thanks sdp....I appreciate your input.   He had a CT in August, but it sounds like the CTs don't pick everything up. 

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Phil - been thinking of you, glad to see you posting and doing well!

Hubby's onc said the same thing about having patients whose CEA has gone up but they haven't found the cancer.   It's enough to make you crazy.    It just kept going up by .1 from surgery until August (.5, .6, .7, 8) and then Sept was 1.9.  Just seemed like a big jump all of a sudden and I'm hoping it's from his back pain (inflammation?)

Now I know what AA means about her posts not going in the right place!  grrrrr!

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annalexandria
Posts: 2573
Joined: Oct 2011

all that bitching I was doing!

But on a more serious note, Jen, I'm concerned that your husband has only had a CT scan.  When combined with the pain, and the slight change in CEA, I would want a PET scan to check things out more closely.

I literally almost died because of my doctor's reliance on CTs only.  I was doing chemo, having lots of pain, and getting scans that said things were fine.  Things kept getting worse after I finished tx, and my doc sent me to a G-I guy because he thought I had an ulcer or something.  NO WAY was it cancer because the CT scan said it wasn't.  I finally landed in the ER, where it was determined that I needed immediate surgery.  I was given a PET in preparation for that, and the cancer was all over the place.  It was only sheer luck that it turned out to not be quite as bad as it looked, and my "palliative" surgery became potentially curative.  That was a very bad time, which could have easily escalated into the ending that Chels is talking about, and it all could have been avoided if my doctor would have just ordered a PET months earlier when it was obvious something was wrong.

Ok, I'm sorry...i've probably freaked you out enough here.  But I've read about too many people on these online sites getting screwed over because the CT scans just don't always work well on CRC patients.

Is there any chance that he can get a PET?

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annalexandria
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but my "b-i-t-c-h-i-n-g" was not?

CSN is discriminating in favor of poop-related cuss words!

jen2012
Posts: 1607
Joined: Aug 2012

I see you found a way around the rules :)...it is funny what is ok and what isn't.

Yes you did freak me out a bit but that's ok. Knowledge is power right? He had a pet scan in march...before that I think Nov. I think shes planning another in Nov but maybe we can get it a little sooner. Thanks AA...I think he (and I) want to believe its nothing but that's really hard with the stage 4 diagnosis..as you know.

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Phil64
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Joined: Apr 2012

In my case BOTH CT and PET Scans were showing normal / no cancer. Only MRI of liver showed tumors in the liver. Now my scanning includes CT, PET, and MRI of abdomen/liver.

When they did finally find tumors in liver initial MRI showed two larger tumors and three smaller tumors, although the smaller ones were "inconclusive."

After four rounds of FOFIRI & Erbitux the new MRI only showed two tumors.

Moral of the story?

All imaging technology is fallible.

Try to use ALL possible imaging technology to have best chance of knowing what is going on.

FYI... The Tumor Board at U of Michigan Cancer Center were all flabbergasted that CT didn't show tumors in liver.

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Phil. Having been thru radiation for tc he is hesitant to have lots of pet scans...and I'm nervous about what could sneak up on us. He tells me I need to have more faith and trust.

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annalexandria
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but then my doctor pointed out that cancers caused by treatment tends to show up about 30 years down the road (and that's talking about actual radiation tx, not just scans, which have a lot less of a kick).  I figure if I'm still here in 30 years to develop something new, it was worth it.

And again, I re-read my comment, and I really didn't mean to be sounding the alarm quite so loudly!  I just had such a close (and avoidable) call myself that I get a little worked up when I read something that sounds similar (even if it's probably not).

jen2012
Posts: 1607
Joined: Aug 2012

No worries AA - at least I don't feel like I'm worried for nothing.  We see the Onc in 2 weeks.

Unfortunately this cancer came 12 years after radiation for my hubby.  It was kind of funny that the onc and surgeon didn't think this was caused by previous radiation, but the radio onc we met with said it most likely was - without hesitation, as did a friend of mine that is a urologist.

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tanstaafl
Posts: 1299
Joined: Oct 2010

Between large scale vitamin D3, anti-arthritis supplements and celebrex, my wife got rid of a lot of joint and bone pains.  Has anyone ever tested your husband's blood levels of vitamin D?  Gross deficiency in stage IV CRC is very common and chemo makes it worse.  My wife needed over 12,000 iu of vit D3 per day while on mild chemo just to break even; she's been on 25,000-40,000 iu D3 with special K and minor monitoring for ~2¾ years.   In the face of a rising CEA curve, we added repeated tests like CA19-9, LDH, GGT, hsCRP, fibrinogen, PT-INR.  We've checked D-dimer, AFP and CA72-4 once at critical points to identify possible surprises.

A lot of "Olymphians" with distant lymph nodes, like your husband's para aortic lymph nodes,  have had low CEA and use CA19-9, too.   Even with low CEA, a clear bimonthly CEA trend upward over 4½ months long is likely significant and we move harder and faster on scans, tests and interviews (wife always on low dose chemo and therapeutic items, we insisted on a very successful second operation to remove a para aortic LN cluster previously left in).       

jen2012
Posts: 1607
Joined: Aug 2012

Tans... last vit d test was August. It was low 30s..low side of normal. He is going to start taking hit d again since we aren't getting much sun now. I asked onc about ca 19-9 and she said they don't test for that in Crc. I suppose I could push for it ...wonder if the ins will pay for it.

He has had disc issues in the past and he thinks that's what this is but its hard for me to relax and agree.

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tanstaafl
Posts: 1299
Joined: Oct 2010

I asked onc about ca 19-9 and she said they don't test for that in Crc.

Usually true, and for insurance too, although our ins will pay for hospital labs (3-5 x higher) with the insurance dr's signature. For low CEA, this answer is a common indication of a dr's limited medical insight on global literature.   I shopped hard for a low cost lab with new equipment,  and we mostly pay cash. The inflammation is more likely to affect serum CA19-9 and some other values than CEA.   The other tests, LDH,  hsCRP (or ESR), fibrinogen and maybe D-dimer are worth asking about.   

Testing extra assays, once or occasionally, kind of a blood scan, might you help identify anomalies, opportunities and surprises.  I've learned the hard way that we (usually) can't go retake missing blood data but the old pathology (fixed tissue) samples from surgery can be re-stained.   That said, the low CEA probably means late (post surgical) cimetidine isn't useful right now.  The real issue is whether those lymph nodes are enlarged and what treatments would work best.

jen2012
Posts: 1607
Joined: Aug 2012

Tans...the surgeon did remove 2 or 3 para aortic nodes. He wasn't sure they were the same ones that lit up but they didn't light up again since.

danker
Posts: 1274
Joined: Apr 2012

Quit worrying about CEA numbers

 and go on vacation.  Cancer does not rule you life.  Only if you let it!!!

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Dan..he cant go anywhere and enjoy it until the back is better. We are hoping early Nov...before reversal surgery.

I really wish I could ignore the climbing numbers but its hard. As Chelsea said I'm afraid of having regrets. We've been together forever...he was my prom date....its just sucky how much anxiety this has brought on. I know its the stage 4 prognosis. Hes had cancer before..was treated and we moved on and never gave it much thought. But there really are not that many stage 4 folks around to tell about it many yrs later..and I'm so thankful for the ones that do share their stories. Our baby just turned 2 and I don't want to raise him alone.

PatchAdams
Posts: 271
Joined: Nov 2011

The slightest 'move upward' will freak me out.  My CEA ran 3.4 (high normal of 3.9) for almost 3 years. Went up to 4 then 6.4 with a liver met.  After resection it was 2.1, 2.4 and 2.9 over 12 months with clear PET's and CT's.  Again, 3.9 is the norm for my lab.  STILL scares me poopless! 

 

This past week I read that an underactive thyroid causes elevated CEA readings.  Add that to skin infections/ inflamations, diverticulitis, polyps (could this include severe hemmerhoids?) ,  obstruction in the bowel (does this include constiptation???),  chest colds, COPD, age, fibrocystic breasts......  

 

 

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Patch - so good to have folks who get it.  He actually does have an underactive thyroid and has been on meds for it for a long time...but he's also gained some weight over the last few months and I wonder if his dose needs adjusting.  Thanks for mentioning that!

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