Tumors Die... CEA go up???...or Down?? What U Been Told?

idlehunters

Hey All,

I had a visit with the Onc today. Since I just got done with Cyberknife a few weeks back I figured he would NOT want to do a CEA because I figured it would not be accurate with all them cancer cells dying off like that from the Cyberknife. When I told him that he just sat there staring at me.... LOL... I was like...WHAT??. He said why the heck would I think something like that? Well, because a lot of my peeps on the Cancer Board say that their docs tell them that dying tumors...dying cancer cells..can cause a rise in CEA. He told me that is absolutely NOT true. He siad when cancer cells are dying they have less or no CEA in them at all... They are DEAD. can't measure the antigen in something dead. He said when I had almost 20 tumers and chemo was killing them off one by one.... did my CEA keep on rising??? NOOOOOO.... it kept going down till I was NED. When CEA started rising... we did tests...and what did we find..... NEW cancer growth... MORE CEA!! ok.ok...I get it. I guess I just didn't really think about it when that statement was being said.

So...what about you all???? Why does your Onc tell you dying cancer makes CEA go up??? What is reasoning behind that? .... OR..does your Onc agree with mine??? What my Onc is telling me makes sense and the proof is in the puddin. Just something thats making me scratch my head and makes me go ..hummmmmmm.

As far as the rest of my visit...... He is not going to put me back on full force chemo... just maintenance. A 2 hour drip of 5FU every week for 3 weeks and then off 1 week. On weeks 1 and 3 I will also get Avastin. So YAY.... means no more CPT11 = HAIR!!!!! At the end of Sept I get a CT scan from the Cyberknife people to show how that progressed and if that is still showing nothing new then I will continue on maintenance chemo until I get PET/CT in Oct....and if that is clear that will mean NED and....VACATION CITY!!!! Watch out CP8..... Gonna be one hell of a party!!!!!

Jennie

Sundanceh

CEAs?
That's what I've always been told, Jennie. It may be a question we never get the answer too. If we asked 10-different oncs, we'd get 10 different opinions.

I always thought mine meant something from before. I got my CEA's back last night and they were the lowest in my history at 0.7 - and I've got 100% cancer in the pleura of my lungs, so go figure.

The more I go along, the less I think I know, LOL:)

CP8 seems like a dream right and I hope that I can wake up in time for it.

-Craig

idlehunters

Sundanceh said:

CEAs?
That's what I've always been told, Jennie. It may be a question we never get the answer too. If we asked 10-different oncs, we'd get 10 different opinions.

I always thought mine meant something from before. I got my CEA's back last night and they were the lowest in my history at 0.7 - and I've got 100% cancer in the pleura of my lungs, so go figure.

The more I go along, the less I think I know, LOL:)

CP8 seems like a dream right and I hope that I can wake up in time for it.

-Craig

I Know Right....
Yeah Craig.... that CEA stuff sure ain't following suit in your case. You would think you would be above the normal 5 since you are showing cancer in the pleura... but an all time low????? Wow.... what if they are wrong and you don't have ANY cancer???????? OK..maybe I'M dreamin now.... no, that would be the miracle I pray for for you every nite!!! You take care my friend.

Jen

pepebcn

idlehunters said:

I Know Right....
Yeah Craig.... that CEA stuff sure ain't following suit in your case. You would think you would be above the normal 5 since you are showing cancer in the pleura... but an all time low????? Wow.... what if they are wrong and you don't have ANY cancer???????? OK..maybe I'M dreamin now.... no, that would be the miracle I pray for for you every nite!!! You take care my friend.

Jen

Last year while in chemo my cea was goin up and down and scan
showed a 50% regression in the big liver tumor other 3 small desapear!
Whon Knows , actually l went in to surgery with it elevated I thing it was fourteen ,after surgery 1.2!
Hugs .

gfpiv

CEA Levels
Jennie, as you're probably well aware, there are many people for whom CEA is not a good indicator for tumor burden. And even some cases where, for the same patient, CEA can be an indicator at one point in time, and later not be.

That said, your onc is incorrect to state without qualification that dying cancer cells NEVER increase CEA. Case in point: at Stage IV CC dx in January I had a 500+ CEA level. I then started FOLFOX and Avastin, which have been extremely effective in reducing my tumor burden (>90% reduction in 6 months). However, one month into treatment my CEA had shot up to over 800. Evidently it had to do with cancer cell death, since five months later (on the same regimen) my CEA was down to 3. I've also heard that CEA is especially unreliable for judging changes in tumor burden within the first month or two of a new treatment.

Best of luck to you.
-Chip

geotina

Jennie:
I have heard that also, dying cells can cause CEA to go up. Maybe it is a shift in the cancer cells that causes CEA to fluctuate. Actually, what your doc says makes sense once things settle down but initially, when cells are being attacked the CEA level can go up or down. Maybe every doc has his own opinion on this stuff and just doesn't want to scare patients if there is a little rise and cause unwarraned worry. I have also heard any type infection, including a cold, can cause CEA level to change. CEA is just a small part of the big puzzle.

Your maintenance chemo is exactly what George is on. Different infusion schedule but same drugs. George, as you know, gets the 5FU every week adding in Avastin every other week but his infusion time total is about 30/40 minutes from the time he walks in the door. This includes the blood draw and some fluids. So far, it is doing its job so I hope you have the same result. No side effects except fatigue that day but then he gets up at 6 a.m., goes to work, stays until about 1 or 2 pm, goes to infusion then home so it is a long day and he goes to bed about 9/9:30 p.m.

Save the big guns for when they are needed again and hopefully that will never happen.

Take care - Tina

ktlcs

geotina said:

Jennie:
I have heard that also, dying cells can cause CEA to go up. Maybe it is a shift in the cancer cells that causes CEA to fluctuate. Actually, what your doc says makes sense once things settle down but initially, when cells are being attacked the CEA level can go up or down. Maybe every doc has his own opinion on this stuff and just doesn't want to scare patients if there is a little rise and cause unwarraned worry. I have also heard any type infection, including a cold, can cause CEA level to change. CEA is just a small part of the big puzzle.

Your maintenance chemo is exactly what George is on. Different infusion schedule but same drugs. George, as you know, gets the 5FU every week adding in Avastin every other week but his infusion time total is about 30/40 minutes from the time he walks in the door. This includes the blood draw and some fluids. So far, it is doing its job so I hope you have the same result. No side effects except fatigue that day but then he gets up at 6 a.m., goes to work, stays until about 1 or 2 pm, goes to infusion then home so it is a long day and he goes to bed about 9/9:30 p.m.

Save the big guns for when they are needed again and hopefully that will never happen.

Take care - Tina

Jennie
I heard and read, the exact same thing. That rapidly dying cancer cells release the antigen into the bloodtream causing rising CEA at the beginning of treatment. But I'm no Dr, just adding my two cents.

Kathy

idlehunters

geotina said:

Jennie:
I have heard that also, dying cells can cause CEA to go up. Maybe it is a shift in the cancer cells that causes CEA to fluctuate. Actually, what your doc says makes sense once things settle down but initially, when cells are being attacked the CEA level can go up or down. Maybe every doc has his own opinion on this stuff and just doesn't want to scare patients if there is a little rise and cause unwarraned worry. I have also heard any type infection, including a cold, can cause CEA level to change. CEA is just a small part of the big puzzle.

Your maintenance chemo is exactly what George is on. Different infusion schedule but same drugs. George, as you know, gets the 5FU every week adding in Avastin every other week but his infusion time total is about 30/40 minutes from the time he walks in the door. This includes the blood draw and some fluids. So far, it is doing its job so I hope you have the same result. No side effects except fatigue that day but then he gets up at 6 a.m., goes to work, stays until about 1 or 2 pm, goes to infusion then home so it is a long day and he goes to bed about 9/9:30 p.m.

Save the big guns for when they are needed again and hopefully that will never happen.

Take care - Tina

Thanks All....
Thanks you guys!!! I love hearing all these opinions. Can't wait to show my Onc those articles John printed out. I have heard.. A LOT.. of people on hear comment about that CEA issue but when my Onc explained it to me it did make sense. It all followed suit to how my treatment was/is going. Now I am REALLY looking forward to getting my CEA done Monday cause if the above stuff is true about CEA rising during cancer cell death.... MINE SHOULD BE OFF THE CHARTS after all that Cyberknife.... and that should be a pretty good time to whip out Johns info and say...."Whats up with that??" Like Tina said... CEA is just a small part of this Huge puzzle..... but to me... it's been a VERY percise indicator. I must not apply to ANY of those articles John has shown otherwise over the past year when ALL 20 tumors were dying off from the chemo.... my CEA would have been elevated... It went from 75 down to the lowest of 2.3 and did not EVER go up during treatment until I had recurrance. I will let you all know CEA results. This should be interesting. Thanks again.

Jennie

HeartofSoul

idlehunters said:

Thanks All....
Thanks you guys!!! I love hearing all these opinions. Can't wait to show my Onc those articles John printed out. I have heard.. A LOT.. of people on hear comment about that CEA issue but when my Onc explained it to me it did make sense. It all followed suit to how my treatment was/is going. Now I am REALLY looking forward to getting my CEA done Monday cause if the above stuff is true about CEA rising during cancer cell death.... MINE SHOULD BE OFF THE CHARTS after all that Cyberknife.... and that should be a pretty good time to whip out Johns info and say...."Whats up with that??" Like Tina said... CEA is just a small part of this Huge puzzle..... but to me... it's been a VERY percise indicator. I must not apply to ANY of those articles John has shown otherwise over the past year when ALL 20 tumors were dying off from the chemo.... my CEA would have been elevated... It went from 75 down to the lowest of 2.3 and did not EVER go up during treatment until I had recurrance. I will let you all know CEA results. This should be interesting. Thanks again.

Jennie

question? what affects do
question? what affects do Cyberknife have on CEA levels. similar to chemo? typically cyberknife treats kidney Prostate Lung Brain Spine Liver Pancreas head an neck & melanoma

The treatment delivers beams of high dose radiation to tumors with extreme accuracy

John23

Jennie -
Whew.

Re:
"my peeps on the Cancer Board say that their docs tell them that
dying tumors...dying cancer cells..can cause a rise in CEA.
He told me that is absolutely NOT true. He siad when cancer cells
are dying they have less or no CEA in them at all... They are DEAD.
can't measure the antigen in something dead. "

Oh? Ok.

"Chemotherapy and radiation therapy can cause a temporary rise in
CEA due to the death of tumor cells and release of CEA into the
blood stream. Benign disease does not usually cause an increase
above 10 ng/ml."
From: http://www.medicinenet.com/carcinoembryonic_antigen/article.htm

---------------

"The data presented in this study support both lines of
thought concerning CEA production; however, these results
strongly uphold the theory of CEA release by dying cells."
From: http://etd.lib.ttu.edu/

-------------

"recent observations of CEA upregulation in CRC cell lines by cellular stressors such as
hypoxia9 or exposure to cytotoxic drugs such as 5-fluorouracil.10,11 Moreover, it is plausible
that apoptotic release of CEA from dying cells could trigger transient increases"
From: http://cigjournals.metapress.com/index/8278xq0v077w2166.pdf

-------------

"One possible explanation for the rise in marker levels among
patients with regressing tumor is that the dying cells may
release large amounts of marker into the blood."
From: http://www.faqs.org/abstracts/Health/Tumor-marker

------------

"Colorectal cancer patients whose CEA blood tests rise at the
beginning of chemotherapy and then fall (CEA flare) do better
than patients with a consistently rising CEA. CEA flares don’t
necessarily predict worsening cancer.

Compared to patients with consistently rising carcinoembryonic
antigen (CEA), patients who had a CEA flare had more tumor
shrinkage, longer time before their cancer got worse, and longer
survival time."
From: http://fightcolorectalcancer.org/research_news/2009/

------------

"If we had followed this ASCO guideline of measurement of CEA
level every second month, one of the surge patients would have
been incorrectly interpreted as having experienced treatment
failure, and therapy would have stopped. The patient would have
been incorrectly removed from the treatment, giving her a time to
progression of 11.2 months and 27.3-month survival. To avoid
inappropriate therapy changes based on clinical misinterpretation
of a CEA surge as an impending disease progression, we suggest
that future ASCO guidelines should mention the possibility of CEA
surge. Furthermore, we suggest that no therapy changes should be
based on CEA levels alone at all during the first 6 months of therapy.

An initial rise in CEA level during effective chemotherapy in
colorectal cancer patients may not always indicate progression of
disease but may be a transient CEA surge in patients responding
to chemotherapy. In monitoring tumor responses and in future
guidelines for the use of tumor markers, the possibility of a
surge phenomenon should be taken into account. This will
especially be important if a new, more effective treatment with
high response rates or rapid tumor destruction is introduced. "
From: http://jco.ascopubs.org/content/21/23/4466.full

-------------

Those last paragraphs (note bolded text) say more than enough regarding
CEA and mistakes that can be made with treatment scheduling.


And Re:

"He told me that is absolutely NOT true. He siad when cancer cells
are dying they have less or no CEA in them at all... They are DEAD.
can't measure the antigen in something dead. "

Maybe you oughta' shop around for a new Onco..... You deserve
better care than an idle assumption.

(I wanted to re-phrase that last statement....... My extreme anger at
physicians that are too busy making money to do research, was showing).


John

lisa42

interesting
Hi Jennie,

I guess combining your situation, my situation, how your onc explained things, and the quotes of information John posted, this just goes to show that no one patient reacts in the same way and that there is a variety of ways patients respond. Some patients' CEA starts going down right away when the chemo is working, but it's important to note that some patients' CEA spikes in the first two months that the chemo starts working. Sounds like what your onc said seems to be the case for you, but he should realize that it may not be the same for all of his patients who have an initial CEA.
My CEA seems to be similar in how yours acts for you. Mine has never spiked when the chemo was working- as shown by scans. Its going up always has meant cancer activity and its going down always showed in the scans lessened cancer activity.
Weird, though, how Craig said his was always reliable too and now that he has active cancer in his pleura, his CEA is now lower than ever.
Hmmm... I was also told by my onc and by a nurse that however CEA is for a person- reliable or not reliable- that it usually doesn't change for that person. But, it apparently did for Craig.

Well, since how your onc explained it to you seems to be consistent with how it's been for you, I'd go along with accepting that for your own sitatuation.
It is perhaps alarming, on the other hand, after reading all the info John posted that is from reliable "western type medicine" sources that your onc didn't seem to be aware of it.
My own onc always has told me about how CEA can rise when chemo is starting to work, but he now realizes that doesn't seem to happen in my situation.

Take care-
Lisa

Takemeom

yea

so who was right?

are  you still alive?

my cea is going up

Trubrit

Some are gone, some are not

Craig (our Lion) Pepe, Lisa, and Tina's hubby are all gone. I believe Jennie is still with us and definitely our John.

Several here on the forum have experienced reuccurance (myself being one) and are doing well. 

CEA is not always a good indicator, so keep faith that all is well. 

Pop onto the forum home page and post a new thread, let us know how we can help and support you. 

TRU

ron50

unfortunately

     We lost Jennie (idlehunters) on the 18th of August 2012 from complications from secondary brain tumours. She was a special lady and her loss left a huge hole in our ranks. Ron.

zx10guy

Takemeom said:

yea

so who was right?

are  you still alive?

my cea is going up

When you say your CEA is

When you say your CEA is going up, what exactly do you mean?  What is the increase number wise?  How long has the increase been going on?  Has CEA been a good indicator for you?  Have you had any scans lately?

Trubrit

ron50 said:

unfortunately

     We lost Jennie (idlehunters) on the 18th of August 2012 from complications from secondary brain tumours. She was a special lady and her loss left a huge hole in our ranks. Ron.

D****

I'm sorry to hear this news. Thank you Ron, for sharing. The list grows ever longer. 

TRU