CSN Login
Members Online: 13

CEA is rising- seeing onc Monday

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

I mentioned a couple of weeks ago on one of the threads that my CEA count had gone up slightly above normal. CEA has been a good marker for me- the only other times it's ever gone up for me before was when something was going on (tumors growing). It's not terribly high as some people have had,but it is going up. When I was first diagnosed with stage IV cancer back on 8/07, it was at 79. After my Folfox chemo, radiation, and then healing from liver surgery, it was down to around 1 or even 0.9 once, but it was then up to 17 this past August, which is when my PET scan showed activity again in my lungs. I went on and just recently finished 7 months of chemo and then my PET showed no more activity, so I went on maintenance level treatment. Six weeks of this and then my CEA went from normal (1.2) up to 3.7. The oncologist didn't want to jump to conclusions from just one CEA test- thought maybe it was a fluke. Well, I had it tested again two weeks later and got results two days ago- it's now up to 4.2 (and this was taken after being on my "two weeks on" of Xeloda- the time before was taken after being on "two weeks off" of Xeloda). Not huge jump, but it is an upward trend. I have an appt. w/ my onc on Monday to discuss it. What do you all think- should I let it go another two weeks and test it one more time to see if it's still really going up, or should I ask the Dr. for a PET scan now to see if there's anything lighting up or showing up on it? My last PET scan, which was normal, was on April 6th- so it's just been 7-1/2 weeks since I had a scan. I started "maintenance", which is that I went off the Camptosar, cut my Xeloda dose in half, but am still doing the Avastin infusions every two weeks. The CEA started going up just 3 weeks after making that change in treatment.
Any advice or thoughts would be welcome

Thanks so much,
Lisa

maglets's picture
maglets
Posts: 2417
Joined: Jun 2006

Oh Lisa what a bind. I have no advice for you.....my CEA's are on the rise too so I am just holding out my hand and offering support. I hope someone has some advice. Good wishes Lisa ....I am thinking of you

mags

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Lisa I don't know what to say. I hope someone can give you advice so I can read it also. My husband asked his Doc what his CEA was when he started his chemo treatment FOLFOX + Avastin. This was not his regular onc. His CEA was 25 and she told him they usually go by how the person feels??? I have read the people that post CEA levels and I am wondering if he needs to mention this to his regular oncologist? We are knew to all this and reading other's stories have helped us with many questions we need to ask.
It is such a shock and so many question pop up as you go along. Hope you are still doing okay. Paula G.

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Lisa,

I don't have anything to add. CEA is not a good marker for me. Mine was .136 when I was diagnosed, and hasn't changed much since then, so my doctor ignores it. I just want to say I am thinking of you and praying for good results.

Many hugs, Vicki

Kathleen808's picture
Kathleen808
Posts: 2311
Joined: Jan 2009

Hi Lisa,
I'm thinking of you and saying prayers for you.
Aloha,
Kathleen

taraHK
Posts: 1961
Joined: Aug 2003

Hi Lisa,

Sorry about the rising CEA. I'm not really in a position to give advice. 4.2 doesn't sound super high to me but, as you say, it appears to be rising and CEA has been a good indicator for you in the past. Maybe the most important thing is your comfort/anxiety level. If it is really worrying you, and if your onc is supportive, maybe better to proceed with some further testing -- if just for the peace of mind which I hope and pray that might bring you.

Best wishes,

Tara

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Gee, Lisa... I'm not sure what to say. On the one hand, it is not "high" or even considered "elevated"... on the other hand, there is definitely a trend of it rising.

You say that it started doing this when you got the change in the chemo treatments... cutting out one, halving the Xeloda and staying with the Avastin. I am no doctor so am just thinking out loud here... but maybe the Xeloda or Camptosar were the trigger that was keeping it stable and inactive.

I tend to agree with Tara... at this point I would take into consideration your comfort and stress level. I would listen to see what the onc has to say on Monday. I would ask him if he thinks having a PET scan this close to the last one, if it would be worth it since the April 6 scan was normal with nothing lighting up. I would certainly take comfort in that since it was not that long ago. I really don't think waiting another 2 weeks to do another CEA is going to be dangerous... but are you going to be comfortable waiting or will the stress cause you grief?

Take it easy over the weekend... and when you see your onc on Monday, see what he has to say. He might suggest something that makes sense and you are ok with it. If you are still feeling antsy, then discuss with him the pros/cons of having another PET scan this close to the last one (and will your insurance company pay for it since these are the expensive scans). The insurance company may question having two PET scans so close together... not that I think it's any of their business.

Do keep us posted!

Cheryl

KFalvey
Posts: 117
Joined: Mar 2005

Hi Lisa,

Sorry about the rising cea, but try not to rush into another pet scan too soon. It won't show anything smaller than 1 cm. so it may miss something (possibly several tiny tumors starting to grow) that haven't gotten big enough to be seen yet. I did that during my last recurrance; CEA is a good indicator for me also but it seemed to rise much faster and higher during my recurrances compared to my first CEA test when diagnosed. I know the anxiety it causes but wondering if your insurance will cover scans can also cause anxiety and you don't want to miss whats growing by scanning too soon. Get another CEA test sooner-their much cheaper and easier; just don't panic if it continues rising quicker than before.

Best of Luck,
Kandy

Annabelle41415's picture
Annabelle41415
Posts: 4309
Joined: Feb 2009

I'm not sure what to say about your CEA levels. I would ask your doctor specifically what their thought is about this. I know people tell you not to worry, but it is harder done than said. I've heard of other things causing a rise in CEA levels, but I'm not knowledgeable in that.

Hope all goes well on Monday!

Hugs!

Kim

dorookie's picture
dorookie
Posts: 1684
Joined: Jul 2007

If your ONC will do a PET scan then do it, like others have said if nothing more then peace of mind for you. I will be praying that its nothing. Has you stress level gone up lately? Could that be a cause? I dont know I am just asking.

Beth

angelsbaby's picture
angelsbaby
Posts: 1161
Joined: May 2008

I hope the best for you, the tests will tell whats going on. try not to worry

michelle

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Thanks everyone,

It's just reassuring to hear all your thoughts. If I remember correctly, in the past the insurance would pay for another scan if the Dr. deemed it neccessary as long as at least 12 weeks had passed since the last one. If that's the case again, that would be another 4-1/2 weeks. That might be okay, as I don't think anything really drastic would happen in that time span. My gut instinct says something is growing inside me, although I have no symptoms. I've never had any symptoms or problems with my lungs, even though I have "numerous" tumors in both lungs(all 5mm-1 cm as of last scans). So, I don't think I can go just by how I feel since my symptoms started just a few months before my main diagnosis and I was already stage IV by then. I do want to get another scan, but will probably wait another month to the 12 week point. We'll see what the onc says. At my PET scan in August, I had nodules light up with "intense uptake", as the report stated, that were even just 5 mm to 1 cm. I guess often times PETs don't show anything that small, but that fact that one of mine did, makes me think this one might too, if there's anything to be shown. I realize that if it doesn't have anything show up, it could just be that it's there but too small to be seen. Well, I'll check back in w/ you all after Monday's appt.
I have another appt. June 17th (the soonest I could get it) w/ another oncologist at Moores Cancer Center/UCSD- I'm hoping to change to him regardless of what my current onc says & I think I may be making some headway w/ my insurance on that, even though they told me "no changes" a while back.
Anymore CEA info is still welcome, otherwise, I'll just check back in after Monday's appt.

serrana
Posts: 163
Joined: Apr 2009

Here is another example of how Aetna is running the show...you say they will approve a PET 3 months from the last one IF the doc says it is necessary??????//This is ridiculous. USC Norris routinely does PETS whenever the doc wants one, not on a 3 month interval set my an insurance company. Ridiculous.
I hope you will check this out w/ your second opinion onc.
Serrana

dmdwins
Posts: 451
Joined: Aug 2008

Don't know if this will help -but... My cea unfortunately is not a good indicator for me. It was normal at diagnosis 3.5 (5.0 normal at our lab)It has been in the normal range but fluctuates every time 4.2 post chemo then 2.1,1.7,back up to 2.8 and then 3.4 just when I got my ned Pet/ct scan. I know it is in the normal range but it drives me nuts anyway. I asked if we should still do it if it isn't a good indicator and my onco said we should still keep an eye on it. I asked him when he would be concerned and he said not only an upward trend but a 3 fold increase.

I know that you are different in the fact that yours has been a good indicator - but I just wanted to share the fact that even in a person that is not a good indicator it can fluctuate alot and be influenced by many factors. Hope this helps some.

I will be praying things go well on Monday.

Take Care,
Dawn

serrana
Posts: 163
Joined: Apr 2009

Hi Lisa
What did your onc say about the upward trend in your CEA?
Serrana

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi,

Well, I went to see my oncologist today to finally discuss the upward trend in my CEA. As I had some frustrations with him lately, I was kind of fired up yesterday and this morning about some issues I was going to confront him on about the past. Well, I prayed about it that I would say and act in whatever way would be best for the situation and for me, and when I got there, I ended up not being confrontive at all. I mean, I have to work with him for at least a little while longer (while I'm appealing Aetna's decision in denying me going to any other oncologist). I will have to either continue what I'm doing or maybe start a new treatment again under his care, so I think it would not be good for me to have bad feelings. I did bring in some articles I had read lately and discussed them, so he's definitely aware that I'm always interested in learning new information.
Anyhow, he wants to have me test the CEA one more time. He discussed the natural fluctuations of the CEA, but also did acknowledge that it's been a good indicator in me & has only gone up in the past for a reason. I'll have the blood draw again for the CEA this Friday & will get the results of that when I go in next week Tuesday for my Avastin infusion. If it's stable or down- great- if it's up again, then we'll be discussing the "what to do next" (which we discussed some already, but he wants to wait until after another read).
I suggested that maybe when I went on maintenance, that we reduced my Xeloda by too much & maybe I should double it again. He said we may end up doing that, but he wants to wait until after my next CEA reading. The reason for that is if I started taking a higher dose of Xeloda before then and the CEA goes down, he wouldn't know if it was from the Xeloda or if it would have done that on its own anyhow. What he said actually did make sense, so I'm okay for the moment. I still don't neccesarily trust his knowledge for my future, but that's another issue that I won't go into more again.
Oh- on another note- I had mentioned in another thread a while back about how my vitamin D level was really deficient at a 13 when normal is 32-100. Well, I had been taking vitamin D but it hadn't been working. So I then researched what will absorb the best. I ended up ordering online from Dr.Mercola's website "spray" vitamin D. It's sublingual- you spray it under your tongue. It's the newest thing and has the best absorption.
Well, this last test showed my vitamin D is now up at 33!! It worked! My onc did talk about how it's pretty well established that there's a link between vitamin D deficiencies and colon cancer and breast cancer. He told me to continue to take it. I'm hoping it will also help with my aching bones and joints. Can't hurt, anyhow!

Lisa

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Your appt. showed some interesting, positive points, Lisa... and as much as you have issues with him as your oncologist (and rightly so), I think some of the things he mentioned are probably correct.

For example, he is pretty adamant that he wants you to have another CEA test before changing anything in your current treatment and that makes sense. We always talk about getting second and third opinions with doctors, but I think that should be applied to tests as well, especially blood tests which are so non-invasive. If one's CEA changes and shows an upward trend, it is so easy to assume the worst, especially when your CEA has always been a good indicator in the past. On the other hand, there is always the chance it was taken during a fluctuation... so a "second opinion" or "second test" sounds very reasonable and good planning.

If I recall, your mets in your lungs are/were stable as of the last CAT scan, right? So is there a plan for another CAT scan in the near future or is he going to wait for the results of the CEA test and if it's still reading a bit higher, order a PET scan instead? Just wondering.

Interesting about the Vitamin D! I'm surprised, even with the better absorbing spray that it is registering so much better so quickly. Not that I have any idea how long it takes to up the level in one's body for the reading to show, but it feels like you were just talking about this a couple of weeks ago and were going to order it from Dr. M's site. I've always been a little leary of Dr. M's info. I mean, I find his articles fascinating and they certainly do make a lot of sense... on the other hand, when someone has a "product" to sell for everything he writes about, I have to wonder if it's not a little bit of a money-making venture. It's like back when Dr. Phil all of a sudden jumped on the "diet wagon" and had all these diet products... since when did he turn into a Diet Guru?? When low carb diets were popular, Dr. Phil became the diet doctor who supposedly did years of research on the perfect diet... but it only worked if you bought his products ;) Needless to say, that plan of his bombed big time and I don't think he even has his diet website anymore. So, I'm not saying Dr. M's products aren't good, but the Dr. Phil's of the world have made me very skeptical of anyone who writes about "conditions" and then has the perfect solution in products if you order from their website ;)

BUT, I'm happy to hear that it's working for you and when you get your next Vitamin D reading it will be good to see that it's still where it's suppose to be! I'm going to get my onc to order a Vitamin D test for me as well :)

Keep us posted when you get your CEA results next week!

Cheryl

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Cheryl,

Yeah, I actually felt pretty good about the appt. So, we'll see what happens after this next CEA (results Tuesday- a week from today, since I'll check it Friday).
Re. the rise on my vitamin D level, I was really amazed too. I expected it to go up just a few points from the 13, not all the way up to 33! I was always a little leery of Dr. Mercola too, but I've gotten a few things from his site and have been pleased. I'm now looking into the under the tongue spray multivitamin. After learning so much of a vitamin pill is just not absorbed, I'm thinking it might be a wise idea.

I just had an interesting phone call a few minutes froma case manager from my medical group who said "she doesn't know why Aetna ever told me I couldn't change oncologists- she's looking to that today for me- because she claims my medical group is actually contracted with the other onc I've been wanting to go to but have been told I couldn't! I'm posting another thread with that. It's crazy, but maybe things will end up working out for me after all!

steven12
Posts: 52
Joined: Dec 2008

Several months ago I posted a new subject: "Treat the high CEA or wait?" CherylHutch thought I am an idiot so she explained that it is not the CEA what we trying to cure here but the disease called: cancer. CEA was a good indicator for me and my point was that although it started to rise like crazy PET/CT scans showed only a marginal, if not questionable, lesions on 2 or 3 places in my abdomen with no organs affected. My onc wanted me to start a therapy right away but I was reluctant and finally we agreed to wait. He said that in months I would start to get some symptom's for sure but this never happened even after a year. As the marker rose to more than 300 I agreed to start my second chemo after 4 years. Still, no signs of progression on the CT. When I had a baseball size tumor my CEA was 50. After only the second cycle of Xeliri the CEA went down to 10 when I actually stopped the chemo as I couldn't bear it any more. This was last year. Early this year my CEA went up to 260 but again, CT showed no sign of any progression. I started to take Xeloda again without Irinotecan now and my CEA started to decline slowly. I will have a new CT soon to see if there are any progression or maybe new lesions. After all this experience I think they still don't exactly know all the aspects of the correlation between the cancer and the CEA marker.
Regards and all the Best to every body
Steven

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Steven,

Wow, I'm amazed to hear that your CEA went so high with nothing much seemingly going on. That does help me calm down a little in my worries about it- thanks.
I'll be checking the CEa again and if it goes high, we'll probably take another scan and then we'll see...

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

That is one hell of an ACCUSATION, Steven. I have never thought ANYONE on this board was an idiot when discussing CEA, cancer, cancer symptoms or cancer treatments ... and have gone out of my way to explain conditions and terms as I understand them from my own personal experience. I also will go out of my way to help newbies get over their initial fear/terror of a diagnosis. I don't have a clue who you are and after that accusation, I couldn't care less who you are, but for the sake of the rest of the board, I would expect you to apologize for that accusation.

I couldn't believe it when I read those words... I had to read them 3 times and asked myself, "Did he actually put that in writing???" So I went and checked out the thread to see how you could possibly come up with such an accusation:


Steven's Thread "Treat the high CEA or wait?"

I would like everyone to read his post and my response. Nowhere did I indicate Steven was an idiot, nowhere was I knocking him down or what he was saying down. I was responding to the post and the information he gave in the post at the time in December to the best of my ability and what I know of CEA and how it has been explained to me.

It's up to you whether you want to apologize or not... personally, I couldn't care less. You asked questions in that initial post and I answered them and asked a few questions of my own. You've now given more information 5 months later and I could respond to it but damned if I will. If this is the way you treat people who try to help then who would want to waste their time trying to help?

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Cheryl,

My 2 cents worth... Stand back and take some deep breaths... maybe you shouldn't have put your initial reaction into writing. I understand you feel put out, but the "attack mode" isn't going to help anyone here (stress feeds cancer, rememeber? :)
Steven, I imagine you didn't mean to attack Cheryl, did you?

OK- let's "breathe" here!

steven12
Posts: 52
Joined: Dec 2008

I hate to post anything other then the initial subject. Sorry if anybody understood that I am attacking anybody. I never, repeat: never attacking anybody. Please just read the thread which I was referring to and made your own judgment. Once again I am sorry if you Cheryl feel offended but that wasn't my intention by any means. I just felt an idiot myself after your posting. These are my last words about this. Thanks.
Best wishes to every body
Steven

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