Re: CEA Ranges

[Guest guest]

I'm not a DR so DO check with one but here's my 2 cents worth based on MY

experience.

Normal for a non-smoker is BELOW 5.

yes your FIL has high numbers. However many on this board have had high #'s

and got down to normal with treatment.

I don't remember my husband's exact #when he was diagnosed but know it was in

the 40's with stage 4, a swollen liver and an initially poor prognosis.

I don't think you should worry about the # right now just see what treatment

might do. My husband's CEA took about 6 months to get down to normal and

floats around 2.5-3 however though he feels great there hasn't been any

shrinkage

just stability in his tumor load.

On the other hand we have Bert who WAS stage 3 but is now No Evidence of

Disease and his CEA has floated all over the 2-10 range, and I think Monika had

said he started off very high, much much higher than my husband, Phil.

So as you can see there is not always any rhyme or reason to the #.

It's just one of many indicators. These days I pay more attention to blood

counts.

Look at RBC -Red Cell Count

WBC - White Blood Count

CBC- complete blood count

and Platelets

These will give you a general idea of how healthy your FIL is at this moment

in time. If the #'s there are off he may not be able to tolerate chemo in the

short term. If that's the case drugs like

neuprogen, neulasta and procrit (among others) may help.

If these numbers are consistently down he might not be able to take chemo

long term.

Those #'s are the most important to deciding if chemo will add quality as

well as quantity to your FIL's life.

Whereas the CEA seems to go up and down for reasons often having nothing to

do with tumors.

Narice

[Guest guest]

2.2 is supposed to be good/normal.

How is everything else?

What do the scans say? What stage is it? Is the cancer stable,better or

worse? What about blood counts? What is his health like other than the cancer?

Has

he had any significant changes either for better or worse?

What is appetite look like?

Is there any pain? Any blood pressure or diabetic changes

These are what Phil's Dr. looks at when he goes in. In fact CEA is checked

only once a month and they barely mention it other than to say CEA is still

normal. Big deal he still has stage 4!

I just really don't pay a lot of attention to it at all. I've had bigger fish

to fry like his platelet count dropping to close to 0 this summer. We figured

out how to control it.

Now if the CEA gets very high than sure it's a big red flag but 5 that's not

really that bad. There has to have been more going on than just CEA.

You say the CEA now is at 2.2 that's good my husband as I said is at 2.9

and he feels fine.

So as I said before we have to look at the WHOLE picture. ly CEA just

doesn't give it to us. Trust your gut. You know yourself or your loved one

best. If YOU are convinced something is wrong ASK.

Otherwise try to relax.

Narice

[Guest guest]

I don't understand all I have to do is ASK and they give them to me. I have

also had access to every last bit of Phil's file other than the x-rays and I

have read the reports from those. I think perhaps seeing the damage might upset

me, but if I asked I could get them.

When you sign the HIPPA paperwork you list everyone other than the patient

andhis/her DR who is to have access. Phil, the Drs., my older son once he is 18,

my sister and Phil's brother can have access.

I don't think NY has any other restrictions so I don't know why you can't

have the information. Ask the lab and the Dr. Your family Dr. may be able to get

you copies too.

Check with records at Sloan Kettering to make sure you are on the list for

record release and what the actual policy is there. If it sounds weird check

with a lawyer. Every patient should have access to his/her medical information.

[Guest guest]

That bilrubin would concern me as that is liver related.

When are the scans scheduled for?

What is your husband feeling like?

Pain? Lumps?

If he has any change no matter how trivial it seems give his Dr. a call.

Better safe than sorry.

I don't want to scare you but it sounds like things might be changing.

And contrary to what DR. s will tell you if you really need a scan you'd be

amazed how fast you can get one!

If you think he needs it faster be a pain and demand it.

Trust me the staff will get over it if you are pushy. Do whatever the 2 of

you feel needs to be done.

Just a final note I'll be praying and I'm behind you 100% no matter what you

decide. Feel free to write me privately if you wish.

Hang in there God Bless

Narice

flipper759@...

Narice

caregiver to Phil

diagnosed June 19, 2003

vomiting & nausea back pain, blackened stool, tea colored urine,

Stage 4 with multiple liver mets (Initially thought to be pancreatic)

July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

seek treatment. PCP gets the boot

We begin treatment with Dr. Jan Rothman oncologist

at Regional Cancer Center Erie, PA

5FU, Leucovorin, Oxilaplatin

August 2003- Phil's weight drops from 165 to 135

September 2003- Phil goes off diuretic (oops)

In late September he has CT showing

significant

reduction of tumor. ;-)

December 2003- Tumor stable side effects so far are minimal some flu

like symptoms with the Oxilaplatin, dry chapped

hands

and occasional nausea

March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

Tumor still stable, (13 cm in colon multiple liver

mets. Largest being 9 cm

April 2004 1 month chemo break YIPEEE!!!!!

April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin

AND Avastin via 46 HR pump. Weight 160.

4/23 Mouth sores develop using *magic mouthwash*.

CEA 2.5 down from 3.5 before Avastin

Low red & white counts

Dr. states *You could be the poster person for chemo response, when I first

saw you in the hospital last June 2003 I practically had to 'scrape you off

the wall.' " :->

5/17/04 Red & white counts normalized. Platelet count down to 88,000

(normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160

All blood counts at or near normal. Platelets at 122,000

June 2004 One year and still here

Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000

normal White counts drops to .09! Normal is 4.5

Starts week of Neuprogen to boost white count on July 1

7/7/04 Blood Counts normal chemo resumes

July 2004 CHEMO BREAK yipeee!!!!!

8/3/04 Chemo resumes FOXIL + Avastin

Bleeding gums (probably due to dental work), dark urine

resolved by week's end. Blood counts still normal

8/17 Removed Oxilaplatin Hives during 5FU Leucovorin treatment Avastin and

46 hr.

5FU continues.

8/31 Counts too low for chemo

9/7 chemo Leucovorin,Avastin 5FU via 48 hour pump NO REACTIONS YIPPEE

God's blessings to all on this journey!

[Guest guest]

My husband had stage 2 cc.. may of 2002, had surgery and 6 months of

chemo, dd fne through it all... he goes every 4 months to the

oncologist, everything has been great.......until Julys checkup, his

cea was 6.3 and the bilirubin on his blood tests was high.. so the

doc wanted to see him in two months to do more blood tests, he said

if it was still high he would then run scans.. the waiting for friday

to come is not so easy. Does this sound like something to be

concerned about? thank you for your responses.

---

In colon_cancer_support , flipper759@a... wrote:

> 2.2 is supposed to be good/normal.

> How is everything else?

> What do the scans say? What stage is it? Is the cancer

stable,better or

> worse? What about blood counts? What is his health like other than

the cancer? Has

> he had any significant changes either for better or worse?

> What is appetite look like?

> Is there any pain? Any blood pressure or diabetic changes

>

> These are what Phil's Dr. looks at when he goes in. In fact CEA is

checked

> only once a month and they barely mention it other than to say CEA

is still

> normal. Big deal he still has stage 4!

>

> I just really don't pay a lot of attention to it at all. I've had

bigger fish

> to fry like his platelet count dropping to close to 0 this summer.

We figured

> out how to control it.

>

> Now if the CEA gets very high than sure it's a big red flag but 5

that's not

> really that bad. There has to have been more going on than just CEA.

> You say the CEA now is at 2.2 that's good my husband as I said is

at 2.9

> and he feels fine.

>

> So as I said before we have to look at the WHOLE picture. ly

CEA just

> doesn't give it to us. Trust your gut. You know yourself or your

loved one

> best. If YOU are convinced something is wrong ASK.

> Otherwise try to relax.

> Narice

>

>

>

[Guest guest]

I'm having trouble remembering CEA ranges. It seems to me that

normal is less that 3.0 for a non-smoker and 5.0 (lately changed to

6.0) for a smoker. But only about 85% of colon cancer tumors give

off CEA, so your CEA can be normal and your cancer is still roaring

back. Also, other conditions can lead to an increase in CEA. It is

not specific to colon cancer.

Usually the trend is more important than the absolute value. If

your CEA has gone from 1.6 to 6.7, then that might be saying

something, for example. Or if it has gone from 134 to 65 (with

treatment) then that might also be saying something.

Barry

> I know my FIL's CEA is extremely high, but after seeing some of

the CEA

> numbers you all are listing...it's made me more curious. His is

something

> like 594 which is definetly not within the range listed on his lab

report.

>

> I guess what I'm asking is what is the normal ranges and are there

folks on

> the list that have CEA numbers that high. Just curious.

>

> Thanks,

> Dedra

> DIL of Joe (67) advanced colorectal cancer with inoperable liver

metasasis,

> areas of concern on lungs and swollen lymph nodes

> DX 1/04, surgery to remove colon tumor and colostomy

> FOLFOX, celebrex

> 7/04 stopped chemo except Xeloda to allow counts to rebuild and

possibly

> change chemos

> 8/20/04 colostomy reversed

> 9/9/04 back in hospital

[Guest guest]

You learn as you go. I learned most of it right here.

I don't know much more to tell you. The fact he feels great is a big plus.

Keep an eye on him. You will know if you need to do anything else. And as I said

there's no shame in bugging the DR if you feel concerned.

Otherwise I guess it's the old hurry up and wait game.

I'll be praying for you both

[Guest guest]

Hi, I have read alot of your posts, you seem to have alot of

knowledge on cc... anyways, my husband says he feels fine and seems

to be, although a bit more tired than normal, which is why I keep

thinking, something can't be wrong, he looks and feels to good to

have something be wrong. I looked back over prior reports, in Nov

his cea was 4.., in March 4.5 and now July was 6.3, which is why I am

a bit worried right now.. he goes for more bloodowrk on 9/24, then we

call the dr the next week, basaed on the results will determine if we

go for scans... And here for 2 years every checkup was wonderful//

this was certainly a let down. I hope I am worryong over nothing.

You see on the report the doctor gives after surgery it said the

tumor was poorly differentiated and that does not sound good to me,

although it was not in any lymph nodes, the dr said it extended

through the muscular wall to involve pericolonic adipose tissue...I

seem to be looking at prior reports alot these days. thank you for

any info or advice.

> That bilrubin would concern me as that is liver related.

> When are the scans scheduled for?

> What is your husband feeling like?

> Pain? Lumps?

> If he has any change no matter how trivial it seems give his Dr. a

call.

> Better safe than sorry.

> I don't want to scare you but it sounds like things might be

changing.

> And contrary to what DR. s will tell you if you really need a scan

you'd be

> amazed how fast you can get one!

> If you think he needs it faster be a pain and demand it.

> Trust me the staff will get over it if you are pushy. Do whatever

the 2 of

> you feel needs to be done.

>

> Just a final note I'll be praying and I'm behind you 100% no matter

what you

> decide. Feel free to write me privately if you wish.

> Hang in there God Bless

> Narice

> flipper759@a...

>

>

> Narice

> caregiver to Phil

> diagnosed June 19, 2003

> vomiting & nausea back pain, blackened stool, tea colored urine,

> Stage 4 with multiple liver mets (Initially thought to be

pancreatic)

>

> July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

> seek treatment. PCP gets the boot

> We begin treatment with Dr. Jan Rothman oncologist

> at Regional Cancer Center Erie, PA

> 5FU, Leucovorin, Oxilaplatin

> August 2003- Phil's weight drops from 165 to 135

>

> September 2003- Phil goes off diuretic (oops)

> In late September he has CT

showing

> significant

> reduction of tumor. ;-)

> December 2003- Tumor stable side effects so far are minimal some

flu

> like symptoms with the Oxilaplatin,

dry chapped

> hands

> and occasional nausea

> March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

> Tumor still stable, (13 cm in colon multiple

liver

> mets. Largest being 9 cm

> April 2004 1 month chemo break YIPEEE!!!!!

> April 21,2004- Phil starts on new chemo 5 FU, Leucovorin,

Oxaliplatin

> AND Avastin via 46 HR pump. Weight 160.

>

>

>

> 4/23 Mouth sores develop using *magic mouthwash*.

>

> CEA 2.5 down from 3.5 before Avastin

> Low red & white counts

> Dr. states *You could be the poster person for chemo response, when

I first

> saw you in the hospital last June 2003 I practically had

to 'scrape you off

> the wall.' " :->

>

> 5/17/04 Red & white counts normalized. Platelet count down to

88,000

> (normal 150,000. Chemo postponed for 1st time since diagnosi5/24

weight 160

> All blood counts at or near normal. Platelets at 122,000

> June 2004 One year and still here

> Chemo June 17 Severe mouth sores develop platelets drop to 49,000

150,000

> normal White counts drops to .09! Normal is 4.5

> Starts week of Neuprogen to boost white count on July 1

>

> 7/7/04 Blood Counts normal chemo resumes

>

> July 2004 CHEMO BREAK yipeee!!!!!

>

>

>

> 8/3/04 Chemo resumes FOXIL + Avastin

> Bleeding gums (probably due to dental work),

dark urine

> resolved by week's end. Blood counts still

normal

>

> 8/17 Removed Oxilaplatin Hives during 5FU Leucovorin treatment

Avastin and

> 46 hr.

> 5FU continues.

> 8/31 Counts too low for chemo

>

> 9/7 chemo Leucovorin,Avastin 5FU via 48 hour pump NO REACTIONS

YIPPEE

>

> God's blessings to all on this journey!

>

>

>

>

[Guest guest]

RE " I looked back over prior reports, in Nov

his cea was 4.., in March 4.5 and now July was 6.3, which is why I am

a bit worried right now.. he goes for more bloodowrk on 9/24, then we

call the dr the next week, basaed on the results will determine if we

go for scans... And here for 2 years every checkup was wonderful//

this was certainly a let down. I hope I am worryong over nothing.

You see on the report the doctor gives after surgery it said the

tumor was poorly differentiated "

A serial rise in CEA like this can indicate a return of clinical

disease (ie disease which can be seen on scans) by 3 to 6 months. I

would think that his cancer may be coming back and that it is a

matter of finding WHERE as soon as possible and cutting it out of

there. That the tumor was poorly differentiated is not a good sign

either.

Barry

colon_cancer_support , " rerun092<rerun0925@y...>

wrote:

> Hi, I have read alot of your posts, you seem to have alot of

> knowledge on cc... anyways, my husband says he feels fine and

seems

> to be, although a bit more tired than normal, which is why I keep

> thinking, something can't be wrong, he looks and feels to good to

> have something be wrong. I looked back over prior reports, in Nov

> his cea was 4.., in March 4.5 and now July was 6.3, which is why I

am

> a bit worried right now.. he goes for more bloodowrk on 9/24, then

we

> call the dr the next week, basaed on the results will determine if

we

> go for scans... And here for 2 years every checkup was wonderful//

> this was certainly a let down. I hope I am worryong over nothing.

> You see on the report the doctor gives after surgery it said the

> tumor was poorly differentiated and that does not sound good to

me,

> although it was not in any lymph nodes, the dr said it extended

> through the muscular wall to involve pericolonic adipose

tissue...I

> seem to be looking at prior reports alot these days. thank you for

> any info or advice.

>

>

>

> > That bilrubin would concern me as that is liver related.

> > When are the scans scheduled for?

> > What is your husband feeling like?

> > Pain? Lumps?

> > If he has any change no matter how trivial it seems give his Dr.

a

> call.

> > Better safe than sorry.

> > I don't want to scare you but it sounds like things might be

> changing.

> > And contrary to what DR. s will tell you if you really need a

scan

> you'd be

> > amazed how fast you can get one!

> > If you think he needs it faster be a pain and demand it.

> > Trust me the staff will get over it if you are pushy. Do

whatever

> the 2 of

> > you feel needs to be done.

> >

> > Just a final note I'll be praying and I'm behind you 100% no

matter

> what you

> > decide. Feel free to write me privately if you wish.

> > Hang in there God Bless

> > Narice

> > flipper759@a...

> >

> >

> > Narice

> > caregiver to Phil

> > diagnosed June 19, 2003

> > vomiting & nausea back pain, blackened stool, tea colored urine,

> > Stage 4 with multiple liver mets (Initially thought to be

> pancreatic)

> >

> > July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

> > seek treatment. PCP gets the boot

> > We begin treatment with Dr. Jan Rothman oncologist

> > at Regional Cancer Center Erie, PA

> > 5FU, Leucovorin, Oxilaplatin

> > August 2003- Phil's weight drops from 165 to 135

> >

> > September 2003- Phil goes off diuretic (oops)

> > In late September he has CT

> showing

> > significant

> > reduction of tumor. ;-)

> > December 2003- Tumor stable side effects so far are minimal some

> flu

> > like symptoms with the

Oxilaplatin,

> dry chapped

> > hands

> > and occasional nausea

> > March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

> > Tumor still stable, (13 cm in colon

multiple

> liver

> > mets. Largest being 9 cm

> > April 2004 1 month chemo break YIPEEE!!!!!

> > April 21,2004- Phil starts on new chemo 5 FU, Leucovorin,

> Oxaliplatin

> > AND Avastin via 46 HR pump. Weight

160.

> >

> >

> >

> > 4/23 Mouth sores develop using *magic mouthwash*.

> >

> > CEA 2.5 down from 3.5 before Avastin

> > Low red & white counts

> > Dr. states *You could be the poster person for chemo response,

when

> I first

> > saw you in the hospital last June 2003 I practically had

> to 'scrape you off

> > the wall.' " :->

> >

> > 5/17/04 Red & white counts normalized. Platelet count down to

> 88,000

> > (normal 150,000. Chemo postponed for 1st time since diagnosi5/24

> weight 160

> > All blood counts at or near normal. Platelets at 122,000

> > June 2004 One year and still here

> > Chemo June 17 Severe mouth sores develop platelets drop to

49,000

> 150,000

> > normal White counts drops to .09! Normal is 4.5

> > Starts week of Neuprogen to boost white count on July 1

> >

> > 7/7/04 Blood Counts normal chemo resumes

> >

> > July 2004 CHEMO BREAK yipeee!!!!!

> >

> >

> >

> > 8/3/04 Chemo resumes FOXIL + Avastin

> > Bleeding gums (probably due to dental work),

> dark urine

> > resolved by week's end. Blood counts still

> normal

> >

> > 8/17 Removed Oxilaplatin Hives during 5FU Leucovorin treatment

> Avastin and

> > 46 hr.

> > 5FU continues.

> > 8/31 Counts too low for chemo

> >

> > 9/7 chemo Leucovorin,Avastin 5FU via 48 hour pump NO REACTIONS

> YIPPEE

> >

> > God's blessings to all on this journey!

> >

> >

> >

> >

[Guest guest]

No,it is NOT legal for the doc/clinic/hospital to refuse to give any

and all medical information to the patient or his/her legal power of

attorney for health care.The federal patient bill of rights insures

the right of patients to all of their medical records,most

oncologists want the patient to know this information so they can be

an active participant in their care and make inteligent decisions.

HOWEVER,at the same time the Patient is assured the right to their

records,the privacy act insures that they CANNOT be given to or

discussed with anyone else without the written consent of the patient

(or legal POA). So perhaps the problem is that the wrong person is

asking for the info.Bottom line,by federal law,if the patient

requests he/she must be given any and all info requested.

H

> Doctors will not give the patient info on blood count - at least

this

> is the problem at Memorial Sloan. These doctors are so hush-

hush.

> All they say is: there is a growth or tumor is stable. Would you

> believe they refused to release the medical records directly to

us?

> They said it has to be faxed to a doctor. Is this legal?