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going up again

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I had chemo yesterday (day changed from Thursdays to Tuesdays). All went pretty well & I just feel a bit nauseated this morning, but not too bad. I'll be off doing errands in another hour or so. Anyhow, in spite of the fact that all went well and easily during chemo, I was dismayed to find out my CEA rate went waaayyy up over the 2 week chemo break I had.
1st week of a break was due to having a bad cold/cough with tonsillities and being on antibiotics (fortunately the z-pack antibiotics knocked out the infection part pretty quickly). The second week off chemo was because my onc decided to have me wait until the day after seeing Dr. Lenz (a week ago Monday)- the idea was if I qualified for a clinical trial under Lenz, that I'd then be halfway through the required time for clinical trials of having no chemo for 4 weeks prior to starting a trial. As you know, I didn't and won't be starting any trials after all, so I went in for week 1 chemo session of a 3 week cycle (chemo 2 weeks in a row & 1 week off)the day after I saw Dr. Lenz.
Along with my regular bloodwork they drew before chemo last Tuesday, they also drew a new CEA, as they do before I start each new cycle. Right before starting the prior cycle 5 weeks earlier, my CEA was at 74. This was actually down a smidge from the time before of being at 81. Well the two weeks off chemo really did me in- it was up from 74 to 192- more than doubled in just that short time. I had truly expected it to go up, but not quite that much- I thought maybe up to 100 at the most. This is the highest my CEA has ever been since it's been watched in the past 2-1/2 yrs (my first onc never checked it, so I don't know what it was when I was first diagnosed). It was when I had my liver surgery in 5/08 that the hospital checked it & I've been watching it from that point on.
I guess on the plus side, having it go up so much while off the gemzar/xeloda/avastin tells me that that treatment IS doing something! Scary that I can't even take a week or two off, though. I guess I'll keep on plugging on for now.
Now... my colorectal surgeon wants me to have a transanal excision in January to remove the recurrent rectal nodule (just 1/2 cm at this point). My thoughts are now I wonder if that is part of the main cause of my CEA rising and I should get it out right away, OR since my CEA is up, maybe I should postpone it a while so that I can keep on the Avastin until it drops some. In order to prepare for surgery, I have to be off of Avastin 6 wks prior and 6 wks after surgery. It's apparently okay for me to keep on the Gemzar and Xeloda. It's just the Avastin that interferes with healing and can cause bleeding issues from surgery. I guess it's something to talk about with the onc this week.

Take care everyone-
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

I am really sorry to hear your CEA has gone up. I hope the chemo will bring it down. Figuring out when to do the excision is complicated! I am in awe of you doing so much - running errands so soon after chemo!

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Lisa - This news about your CEA is disappointing/confusing. CEA is such a weird thing. I wonder how meaningful a rise is in your case. I think you are right to wonder if the new nodule is responsible. It seams like that thing needs to come out at some point. Why wait?
Hope you can get a good plan in place soon.
Take Care,
Roger

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Roger,
"Why wait" is a good question- I have one nodule in the rectum, but numerous in the lungs and 4 in the liver- so perhaps waiting on the excision and pounding the lung and liver tumors with a complete chemo+Avastin a few more cycles would be the way to go, as I'm now thinking. Yes, the rectal node does need to come out, but I don't want it to come out at the expense of all the others being given more opportunity to grow while being off the Avastin. CEA has always been quite indicative for me- every time it's gone up, that has always shown up in tumor growth or increase in PET uptake. Every time it's gone down, my scan has shown shrinkage and/or reduction in uptake. So, I'm taking the big rise pretty seriously. Not that I want to freak out over it, but I know what it means.
Hope I get a good plan in place soon too- I will. :)

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

My CEA had always been a good marker for me until last July when my scans showed new spots in my liver and lungs despite a drop in CEA. I'm glad that you are not freaking out, but it is good to know that your CEA provides a good idea of what is going on.

I think your idea to go after the lung and liver mets is spot on. You may already have your plan in place. You really have a good perspective and an ability to think logically about your disease. I admire that.

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Lisa, keeping you in my thoughts and prayers. Sorry to hear of the level rising after a short break.. hugs.. Petrina

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Warm and strong....can you feel them?

Hugs, Kathi

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thanks, Kathi!

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Lisa i'm so soory about your CEA count i hope the chemo will kick the cancer a@@@@ lots of hugs Tina

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dear Friend,

I am sorry that your CEA levels have risen. You are an amazing lady and such an inspiration to all. I will be praying for you.

Big Hugs and Prayers,
Debbie

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Lisa, I've always been concerned, since you never ever had rectal surgery, that there was some cancer there spreading little cells to other areas. Gut feeling has always been to encourage you to have surgery as soon as possible.

I'll be praying and know you'll give this to the Lord. Let Him guide your decision.

Big hugs to you,
Diane

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

Thats not real good news about your CEA and so sorry to hear that. Hopefully once you get this taken out, your levels will go back to normal. Glad your chemo went well yesterday and you aren't feeling too bad. Hope you get some answers from your oncologist this week.

Kim

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Awwwww Lisa,

I don't understand it, why your cea has gone up so much. I hope it's just because of the tumour in your rectum. :-( Ok enough sad faces from me!! I will pray for you my sister (in christ), as soon as I get off. And I hope we can arrange to talk on the phone soon.

Hugs my sweet friend
Sonia

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Lisa, just a note with an enclosed hug and I will also say prayers for you. You are an amazingly courageous lady. I admire you immensely. Keep us posted. Hugs, Joyce

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Just get this surgery and beat the beast! CEA will drop you will see!
Hugs, vibes, and prayers!

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I am with you on staying with more chemo. CEA didn't rise till you were off chemo...which means it WAS keeping everything down...even the butt bump. I would want to get counts back down before surgery because you know counts are going to go up when you have to get off the juice FOR surgery. Just my opinion... Your CEA has always been a very good indicator for you. Go with your gut. Call me if ya wanna talk. Take care.

Jennie

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Dang that CEA! I know how you are feeling about having it rise. My CEA is at the highest it's ever been too. Maybe having the rectal nodule out will help with the number. I know you will talk to your onc about all of the possibilities and pick the best solution. I am praying for you. HUGS to you.

sasjourney
Posts: 395
Joined: Jul 2010

Lisa,

Sorry to hear about your CEA, but I know you will get it back down. I am praying for you and sending you bigs hugs. Hope we can talk soon.

Hugs,
Sara

bruins1971's picture
bruins1971
Posts: 227
Joined: Nov 2010

Can anyone tell me how important the CEA number actually is. My onc says its helpful but not to read to much into that number. At my highest in the beginning right when I started chemo after the colon surgery it was only 26 and that was when I still have two tumors in my liver. Now after all this chemo and two surgeries my CEA is down to 1.8

Bobby

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

As it has been explained to me. First you need a baseline CEA and it is best to get one before any surgery or treatments. I actually keep an excel spreadsheet with mine on it. For some people it isn't a good indicator but for others it is. Mine does seem to be good for me as it was 9.7 at dx and prior to any treatments. It fell to 2.6 after surgery. This dip in the number shows that removal of the tumor at that time took care of the CEA that was being express by the tumor. My onc says that he expects my CEA to rise before anything shows on any scans as the CEA can pick up increases before the cells are large enough to pick up on scan.

Also, not all tumors or cancer occurences release the same amount of CEA. therefore, you can have a tumor that is a good indicator by CEA numbers but you can also have a period of NED and then a recurrence that might not express the same amount of CEA and therefore not be useful. The number of the CEA is not what is important. It is the trend of the CEA number that is important. Normal CEA levels are 0-3 for non-smoker and 0-5 for smokers. Other things can cause an increase in CEA such as inflamations and diseases that are inflamatory. therefore, a one time increase in CEA might not be indicative of cancer increase so it is important to retest and watch for trends if your CEA is a good indicator for you.

Hope that helps

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

I don't know what my husband's CEA was before surgery or Chemo, the only numbers I have are from the end of chemo and that was 1.8 in Nov. 09, then in April of this year 0.7, July 1.0, October 1.2. Is this something that should worry me or is this still okay since it is very low. Just wondering if this means something might be brewing? Any info would be appreciated. Thanks in advance. Margaret

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

It's tough if you're not sure what the trend is and if it's a good marker. I wouldn't worry about it under 3 unless he is a smoker then 5 and under. CEA flutuates. That looks like a good CEA to me! Hope you and hubby continue to do well. Happy Holidays!

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

Happy Holidays to you to. Today at the child care is red and green day. we are having a blast. take care and God Bless. Margaret

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Dang double post

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Great CEA explanation Lori!
Thanks to everyone who replied- hugs to you all!!
I was in the oncology office this afternoon for a neulasta shot & had hoped to flag down my oncologist- no luck. I guess I'll email him- I think I'll get a faster response that way. I also emailed my colorectal surgeon today, but no answer yet.

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

My onc. has a kind of dry personality and I think he prefers email and is always quick to respond/react.

I'm thinking about you over there on the left side "other Lisa"!

Lisa P.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I agree with the group, Lisa...

I'll be anxiously watching this chess match and waiting on your next move with great anticipation:)

-Craig

Brenda3.16
Posts: 211
Joined: May 2009

Lisa
Just wanted to let you know that I am thinking about you. I hope the CEA gets knocked right back down. Love, Brenda

Jaylo969
Posts: 827
Joined: Jan 2010

I'm thinking of you too Lisa and having observed you for the past year I know that you are a very intelligent woman and will figure all this out....what to do and when to do it stuff. You have my support and good wishes along with, I suspect hundreds of other CSN members.

Hang in there and I will be looking for your updates.

-Pat

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Well, I heard back more quickly than I thought I would from the email I sent my onc this afternoon. He said that with the CEA rose when I went off the chemo, so he thinks the bigger cause of that is my lung nodules. He wants to continue the current chemo with Avastin for maybe even a few months before doing the transanal exision to get any growth there under control first. He said he suspects Dr. Ramamoorthy (the colorectal surgeon) will agree that it's not an emergency and will be okay with waiting (as long as it doesn't grow larger or cause me any worse symptoms in the meantime). We'll monitor that & I'm supposed to let the onc know right away if anything there changes.
So, I guess that's the plan.
I love doctors who communicate by email! SO much faster than trying to leave phone messages and waiting for a returned call.
I'll let you all know if anything changes. :)

Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

I am glad you have the game plan in place, Lisa!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

So glad you heard from your onc and that you're happy with the plan. Thanks for the update. Sounds good to me too ... but, what the heck do I know? The more I know, the more I realize I don't know chit. LOL Hugs and prayers for you.

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

I will keep you in my Prayers. Good Luck. Margaret

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I don't really know enough to offer an opinion in this case, but I just want you to know that I care, and I pray things will right themselves very soon. I can see why you'd be scared, but try not to get ahead of yourself.

*hugs*
Gail

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

Lisa, just want you to know you're getting prayers from this way also! You have always been so kind and helpful to me!
All I can offer is prayers and hugs, I wish it could be more....
Chriss

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

At the onset of this crap, before the first transanal surgery, my CEA was 3. Then after chemo/rad, it dropped to 2.5. After the liver kill off, 1.6 dropping to 1.4. It went up to 2 at the time recurrent bowel resection. A month ago it was down to 1.3. I am a heavy smoker so up to 5 looked good to me. False hope there.

Even with this low number, my super colon doc says we will still keep an eye on CEA.

I am just wired different. I think God was playing prototype games making my body.

Kerry

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

not what I wanted to read when I woke up today. You always think things through thoroughly and I'm sure you will continue to do so. Sounds like staying on chemo for now is the way to go unless that rectal nodule starts giving you too much grief. I know it is easy to say "get it out" but we all know that sometimes that is just not the way it works.

I'll keep you in my prayers that the chemo continues to do its job and things can get under control again. I know too well the felling come on already, I need a break from this.

Take care my friend - Tina

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

Just wanted to say thank you to those of you who recently replied. My heart is warmed every time I write anything and get such dear sweet replies of knowing you think of me and even pray.

Take care and God bless-
Lisa

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Sorry to hear that your CEA wants to rise every time you have a 'chemo holiday'.

I am hopeful that one day soon you will see the good cumulative results of all your treatments.

Prayers for you as you continue this battle. May you find even more strength and heart tomorrow than you have today.

Marie

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Lisa, I'm sorry. The rising CEA is always a worry. I hope it was becuase of your chemo break and it will be under control again after you continue with you chemo. Did you check out nanoknife with Dr. David Imagawa at UC Irvine? Here is his email address again: dkimagaw@uci.edu. You are in my prayers. Best wishes to you. - Lucy

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Lucy,

I sent an email re. the nanoknife but never got a reply. I did discuss it with my oncologist, however, and he told me that he has sent a few of his patients up to UCI for nanoknife evaluation & none of them ended up getting it done. I know each person's case is different, but with those he sent up they were told that they would benefit from either surgery or even cyberknife. He said that he was told nanoknife is still newer and doesn't have the claims behind it like cyberknife does. That's when I went for the cyberknife eval. Since I'm now not having cyberknife either, I will keep nanoknife in mind for the future, but I don't think I'm going to pursue at this time.
Thanks again-

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Geez, where have I been! Lisa, so glad you got it sorted it out!! I think we should all go to our individual ONC's mention you and your plan and see what feedback we get!! Hang in there! Hugs!!

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pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I hope God answers all of our prayers for you.
All the kind wishes here means you don't face the hurdles to recovery alone.
I hope you have a great day today and smile and feel positive now you have
the best plan you can workout sorted.

Besides all the virtul hugs you are getting ( which are great ) , try and get a few extra real hugs from anyone over the next fews days if you feel down.

Don't let that sneaky cancer rain on your parade today. Maybe some good old fashioned laughter might help. I saw the movie "Due Date" the other night and laughed so hard I thought I would have to go back to hospital to get restitched together. I won't feel the same about coffee ever again. If you see this movie you will know what I mean. It will be 2 months since my surgery on the 7th December.

All the medical / chemo info in this post is really valuable. I have learned more in a week on this forum then in all the months of surfing the net aimlessly.

Take care-
Pete

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