CSN Login
Members Online: 10

How often do you get your CEA #'s and when to get PET... Still in chemo phase

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Ok...just a couple of quick questions.... How often does your onc check your CEA? My Dr ran it right before starting chemo and I asked him to do it again in Mid-September. it will be November 1st tomorrow...my next office visit. I am going on treatment #8 of Folfox out of 12 next Tuesday.,

My other question is when did your onc run follow up scans... Ct or pet scan? Did they wait until after 12 rounds of Folfox ... Did they do it right away or did you have to wait 3 months. Is it possible for them to do it before Folfox treatment is done? Part of the reason why I ask is that we will be dealing with new insurance January 1.... Which means new deductibles and the whole run around with getting things approved.

I did have a liver ultrasound recently...they did not find anything. But I have been experiencing mild abdominal pain off and on...not associated with digestion as far as I can tell. The pain is mainly in my lower abdomen just under the belly button...I have talked to the dr about it. It is not bad enough to go to the ER...it is a 3 out of 10 when it happens... It is not constant pain. But I am just worried that something could be growing....I have signet ring cell cancer...which I have been told is very aggressive. I do have a specialist picked out...but they want me to finish this course of Folfox treatment first which will be the last week in dec or first week in January.

Another quick question...how do you know when you have ascites?(sp). My belly seems a little bloated lately. Do they discover them in pet or ct scans or can the dr determine in just a regular office visit? Sorry if this one is a dumb question...but I figs red you guys would know.
Alex

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

I get my CEA number every two weeks, when I go in for treatment. I always ask for copies of the CEA and the CBC panel that they run so that I can keep track of them. As for PET Scans, I was only getting them once a year until I found out that my insurance will cover a lot more than that. Now, I'm getting them every three months.

jen2012
Posts: 1186
Joined: Aug 2012

I hope the pain is nothing serious.

My husband is also getting his CEA (and tons of other things) tested every two weeks the day before treatment. He started Sept 15 or so and she said he'll have a scan (pet or ct - I don't know??) end of November. I'm getting nervous thinking about it already... The plan is to have surgery in Jan or February, and then start up with the chemo again I assume.

We have the same insurance issue, but we have a $5,000 a year max out of pocket and have come to the conclusion that we'll be hitting that every year so it doesn't matter what's done this year and what happens next. It sucks to have to worry about finances on top of everything else.

I'd not be afraid to ask your doctor any of these questions and don't be afraid of being pushy. We are learning that you can't worry about being a pain.

Good luck!

Annabelle41415's picture
Annabelle41415
Posts: 4199
Joined: Feb 2009

Got my big blood work done once a month (including CEA) and CBC's weekly. Had one scan right after diagnosis and then after completing chemo which would have been less than a year later then every six months for first two years (along with blood tests including CEA), now once a year.

Kim

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

I was on folfox6 for 24 weeks... they did a CT scan every 8 weeks.
then, the CEA test was about every 8 to 10 weeks.... and normal CBC tests were every other week.

Now, I'm on Xeloda and Avastin and they do the CEA test only when I push to know what it is.
the CBC is everyone other week and the CT scans now are 12-14 weeks apart.

Momof2plusteentwins
Posts: 436
Joined: May 2012

I'm right ahead of you with treatment #9 Monday. Getting really sick of treatment. I had surgery in June and had CEA and CT in July. Onc said we will do CEA and CT halfway through treatment, so after treatment #6 at the end of sept had CEA and CT and will get it again in dec. Then we will check every 3 months for the first year, then every 6 months after. How are you doing with treatment? I am getting more depressed with each treatment, you would think it would be opposite but everyone is saying only 4 more, that is easy for them to say as the side effects get worse.
Sandy :)

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

I'm on my first treatment this time, yet I understand completely the depressions, on Friday I get my second and am already not looking forward to it. What keeps me going is that looking forward again to surgery, our best hope. You have had the surgery and are on the final count down, and each treatment is more of the same, the side affects,s the feelings that go along with it, really bites one in the soul. I count down, one then two...but Sandy we can do this, together we are stronger. It isn't easy, we know this, BUT you can do this,we're right beside you each day; I swear we are. I also swear we understand the depression, we share that with you, one day at a time, eh?
Winter Marie

Momof2plusteentwins
Posts: 436
Joined: May 2012

Thanks for the positive thoughts. I come here everyday to read, I feel all of you are the only ones that totally understand. I went by the hospital where I worked yesterday to see everyone that I worked with before cancer and even they don't understand. I feel like they just feel sorry for me and I don't want that. I don't know what I want. How did your first treatment go? Monday is #9 for me and I just watch the clock tick closer to the chair that I will sit in for 7 hours and go home with my friend the pump for 46 hours, get disconnected Wednesday and be sick for 2-3 days.
Sandy :)

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

The first chemo went well, and am on the second now, counting down the days for an ice cold glass of water, it's been in the 80's for the past 3 days (unusual here this time of year)and I so desire something cold, but due to oxy, am counting down the days (at least a couple more before I can have a slightly cool drink)until I can have that cold drink. I felt sick the first chemo, but then I hadn't any supply of my "special" truffles or cookies or brownies, and so suffered until my d-i-l found some cookies and felt better since, so was prepared for the 2nd chemo and didn't have any nausea at all. The nurse on the second chemo was a nightmare and I'm trying to figure out how to never have her again without hurting her feelings (I've been stressing on this since Friday) I do Xeloda instead of the pump, so that helps. Hope this finds you doing well ;)!
Winter Marie

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Folfox was kicking my you know what...so last round they lowered the Oxy by 25%... It is a good thing because theirs last treatment was rough. I think I slept for about 2 days, couldn't eat much, and had the big D a couple of times. I agree the cumulative effects are the hardest to deal with. I have also lost probably 2/3rds of my hair...I can now see clear patches on my scalp and it is not slowing down. I am getting ready to order a wig....I am going to a wig shop tomorrow to try some on but will probably order one from Paula young on line. The neuropathy is one of the worst side effects...as I am typing this I can feel that the tips of my fingers are numb. I go on Tuesday for round 8. I hope round 9 treats you well. At. Leaste you will be done by the end of the year...I have my last on the first week of January.

Alex

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

I have my CEA done every three weeks while on chemo, for me that's a good indicator on how my tumors are doing. The ct scans I try to have as least as possible. The between time of scans is scary, the not knowing, but to this day I wonder what other type of cancer that too many scans may be causing; probably because I'm just a worry wart at heart.
Winter Marie

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

Hi Alex,
My Acites were discovered on a PET/CT scan. They showed up about 10 months after my original diagnosis. I didn't feel anything out of the ordinary prior to their discovery.
Hang in there with the FolFox, it's a tough one.
Ron

smokeyjoe
Posts: 1428
Joined: Feb 2011

Joe love your new pic :) Alex, I get scanned every three months. CEA seems to be tested monthly. I have bloodwork the day before chemo., but it doesn't inclue the CEA every too weeks. I think ascites would say on the scans....I have seen my scan results mention something about "no free fluid is seen".....I am assuming it means no ascites or whatever.

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Thank you everyone. the dr said he will schedule me for a PET scan in December so that we can get it in this calendar year! The CEA numbers he said they don't always check them...but the will check them right before my treatment the week before Thanksgiving. I forgot to ask about the ascites ... I'll ask next time... He'll probably look for them when they do the PET Scan in dec.

Thank you to everyone who replied....your information put my mind at ease.

alex

marbleotis's picture
marbleotis
Posts: 475
Joined: Mar 2012

I have signet cell also(3b, 3 nodes, no mets) like you. Finished #12 on 8/23/12. CEA before, during, after treatment. Scan before (no mets), scan on 9/17/12 (clean!), next CEA 12/17/12 and every 3 months after, next scan March 2013 and every 3 months for first 3 years then every 6 months. Colonoscopy at 1 year NED mark 1/31/13. I like you was super-paniced about the "signet cell" postion of our dx. It is agressive (true), not "rare" but not the most common. I see it alot more than we see on the boards. No PET scans planned because the CT will show better if their is anything. I feel comfortable with the plan and if I asked for additional - my Onc would be ok. Protocol is CT every 6 months so we are being a little more cautious. Which is ok, in the event I ever have to deal with this again. (the last thing I ever want to think about BUT with this clear plan in place I feel we would have the best info and anything would be caught early. I know how you feel - your head spins. You will get to #12. Get the port out and start to live. Some days go by when I do not think of cancer every second of the day. Those days come more often now. I know soon you will be posting that you are on #12. I will keep praying for you!

candreini
Posts: 1
Joined: Nov 2012

I just found this sight after a year of being diagonsed with signat ring adencarcinoma of unknown GI primary with Krukenberg tumors. A mouthful! I foud out when I went in for a routine hysterectomy and woke up to "Im so sorry we found cancer". I ended up in the hospital for 2 months with a small bowel obstruction with a NG tube and TPN. I was headed to surgery for the ocstruction but it started to open up the day before. I was started on chemo in the hospital and it started to shrink the tumors. I was discharged and remained on TPN at home for 4 more weeks until i was able to start eating solid food. I was on Oxaliplatin and Xeloda until I had a bad reaction to the Oxaliplatin (stopped breathing) so I was put on carboplatin with no side effects. Mt ct scan in April showed good results with tumor shrinkage, my CEA was down and I felt good again. I remained on Xeloda and went in for blood work every 4 weeks. My CEA is done every 3 weeks when I have blood drawn and ct sacn every 3 months. 2 months ago my CEA started to gradually go up. Then 3 weeks ago I stared having severe adominal pain and cramping similar to what i had in the beginning. My doctor had me come in for a early ct scan an blood work and, as I expected, they stared growing again and the CEA had doubled. He stared me that day back on the carboplatin. I just had my 2nd treatment yesterday and I am already feeling much better. My doctor basically said that we will go on 1) how I am feeling, 2)CT results, and 3) CEA numbers. From my experience, I think this is an important test to watch. Be vigilant and dont be afraid to say something if you dont feel right.

Im just curious how old you are. I am 47 and really havent heard of anyone with this cancer. So it feels good to talk to someone who knows exactly what your going through.

Best wishes!

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

Every three months for the CEA test since the end of chemo--11/10

I will have my second annual scan next week.

I'm wishing me luck and crossing my fingers.

swimmer22
Posts: 53
Joined: Oct 2011

Well I am a Stage IV patient, showing no evidence of disease since September 2011 and not in any treatment. I have a PET Scan every 3 months and blood work (CEA and CA-19) done every 30 days.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network