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darn rising CEA

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

Hi,

My CEA, which has always been very reliable for me, has been playing the up and down game lately. I know some up and down is normal, but when it's already so elevated, it definitely makes me worried when it goes up.
Mine gets checked every 3 weeks, with the start of each 3 wk cycle. Three times ago (after stopping chemo for 2 wks due to illness), it was at 192. Three wks later after back on chemo, it was down to 156. Another round of chemo, then checked this last Tuesday prior to starting another cycle, I just found out yesterday that it's back up again to 176. Now, I've gone without the Xeloda this past week (1st week of the new 3 wk cycle) & can only imagine what it's doing at the moment.
I have an appt w/ the onc Tuesday, so we will obviously discuss all this. The scary thing is that I really don't see many other viable options. I've already done/had Folfox (w/ oxi allergic reactions- onc doesn't want to go there again), was on Folfiri 2, maybe even 3 different times- worked well at first, but then I had new little tumors popping up on it at the end. I've now been on Gemzar/Avastin/Xeloda since March. I imagine onc will order a new scan & we'll go from there.
I'm trying to stay positive and not get freaked out!

Lisa

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

Oh, Lisa.

I'm sorry about that daggone CEA. I wish I could order it to go down to normal for you!

I'll be praying for you and hoping your doctor will have some good ideas about how to fight this latest round of trouble.

*hugs*
Gail

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

Lisa Darlin

Now don’t get an old man all screwed up here.

Get that positive attitude back in all three areas. Hell I know you have the spirit one in the bag. Now get your butt thinking hard on the other two. You and I know this is just one of those damn bumps in the road. We have both been there done that. This will work out. I just know it will.

Love ya
Kerry

AnneCan
Posts: 3692
Joined: Oct 2009

I know this kind of thing is worrisome + I want to let you know I am thinking about you. I am seeing my onc on Tuesday also, so let's send good thoughts to each other. I am hoping your CEA has stopped being reliable + everything is fine. How are you feeling?

Annabelle41415's picture
Annabelle41415
Posts: 6304
Joined: Feb 2009

You have been going through so much and you have researched every option and informed us of things that we never knew of. Maybe the rise is due to fluctions for something else and hopefully your scan will show nothing significant. I'm praying for you and hoping that your oncologist appointment gives you some answers.

Kim

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Lisa, sorry you are having a tough go of it right now. Try to not think to much! It always seems that when I start trying to out think the meds, the doc and the cancer, I get depressed only to find that the doc sees it differently. I'm am going to hold out hope for that for you too! You are such a source of encouragement for me, I hope we can encourage you some. You are a fighter and there is lots of options still out there. Just because we don't know them all we get crazy. Hang in there lady!!! You are in my thoughts and prayers.
I am back to SF Wed. to hear what "new" idea they have for me. See, there seems to always be something!!! Love, Jean

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

Thank you for the encouragement! I know I won't let myself stay down- I can't and won't!!
Jean- I'll be interested in hearing what the "new" idea is that they have for you in SF on Wed. I know you've had a rough go of it & yes, we will keep encouraging each other. :)
Kerry, you're always so funny- I won't let you down! Gail, Anne, and Kim- you're always so positive and helpful & I thank you for the encouragement and prayers. :)

Hugs,
Lisa

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

Lisa, My thoughts are with you. I pray that your CEA will be going down again. I feel the same when we got the news that my husband's CEA went up when we really hoped that it would go down. It's so frustrated. My husband is trying to get into a clinical trial at UCSF. I hope he will be qualified for it. Stay positive. - Lucy

taraHK
Posts: 1961
Joined: Aug 2003

I am sorry to hear this. I like Anne's comment: I hope your CEA has become less reliable! and that this is a false alarm. Are you due for a scan anytime soon? Maybe there are some other 'cocktail' options out there.....

I'm trying to stay positive for you! Hang in there!

Love,
Tara

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Hi Lisa, I know I'm still pretty new on here and learning, but it seems it was here I read that the CEA can go up as we are busting up those cancer cells with the chemo? I would be worried also and know you don't like to see the numbers. I was just thinking maybe.....hoping...that the elevation could be linked to the destruction of the cells?

Thinking of you buddy, Gail

dorookie
Posts: 1736
Joined: Jul 2007

I am sorry to hear this news, I am sure its probably knowing but I hate to hear you getting so upset. You are such a fighter, such a inspiration to us all, you are always in my prayers girl. I pray that your ONC will have a plan of action on Tuesday, please keep us posted. If you need anything please just let me know.

HUGS
Beth

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Gosh Lisa not the news I wanted to long on and read. Hopefully the doc will have some viable options to get things stable again. You must be so discouraged about now and I am sorry for that. Oxi gave you problems in the past but since your cancer has become somewhat resistant maybe revisting oxi and see how it goes might be an option.

I'm sorry for your disappointing news but please try and stay positive. Are there any clinical trials you might be eligible for?

Take care my friend - Tina

Erinb
Posts: 295
Joined: Apr 2010

I hope it's nothing. I wish there was some magic trick I could pull out of my sleeve for all of us. I will keep you in my thoughts. You are & continue to be an inspiration to me.
Erin

annad723's picture
annad723
Posts: 44
Joined: Nov 2010

Hi Lisa,

It's tough I know. My CEA which had been at a 2 for a while, has been rising. The last one was a 23. I had a test on Wed., and am waiting for the results. I know how you feel. I try to focus on the fact that I feel well. If all I do is think about the CEA numbers, I wouldn't be able to make it through the day.

Try to take it one day at a time. Or if that's too hard, one hour at a time. It's only one number out of many. There are good stories out there. I try to focus on those. I just read Winter Marie's post, and it took me out of a funk I was in for the past couple of weeks.

Try to hang in there. We're all doing the same thing.

Anna

sasjourney
Posts: 395
Joined: Jul 2010

Hi Lisa,

I can feel the anxiety in your post about what to do next. I am praying that your oncologist offers some other options. Advances are being made all the time with regards to surgery and medications. Try to stay positive and keep moving forward...I know it is hard sometimes. What about the trials? How about visiting another major cancer center for their opinion? I am keeping you in my thoughts and prayers. I know you are due for some good news!!! Keep the faith.

Big hugs,my friend,

Sara

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

I just sent an email to another oncologist I've consulted w/ at UCSD. My regular oncologist has actually often contacted him for opinions. The one at UCSD a while back mentioned a trial with a type of irinotecan (the main agent in Folfiri) that they did something to so it was slightly different, but I can't remember the name of it unfortunately. I want to see if that's an option. The Folfox worked so well for me when I was first diagnosed in '07, but I'm afraid to have them try the oxy again due to the allergic reaction & I'm scared of dealing with oxi side effects again. Hmmm... I won't get ahead of myself, but trying to think what's out there. It's probably time to look into farther away clinical trials. Dr. Lenz at USC doesn't have anything for me right now & told me basically I won't find much of anything that I'll qualify for in California. I just dread the thought of traveling out of state & am doing what I can to avoid that, but maybe that's what I need to do. I've gone to Tennessee before for the treatment that didn't work & my kids fell apart with me being gone just 5 days.
Well, I'll be okay & I'll update again after my appt Tuesday. I imagine he'll be ordering a scan for sometime w/in the next week or two.

Hugs everyone-
Lisa :)

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

If you find anything in Michigan just let me know I have an extra bedroom and transportation and will get you anywhere you need to be.

Hugs - Tina

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

Tina,

You're so sweet to offer! Where is Michigan do you live? My husband has two cousins there, both of whom I know quite well- one in Grand Rapids & the other in Watervliet on Pawpaw Lake.
I was on the clinicaltrials website last night- printed off a few, but none in Michigan.
Some were in Calif, one at Vanderbilt in Nashville, & a few at Mayo in Arizona.
We'll see...

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

I will keep you in my thoughts and Prayers. You are all so strong for each other, try to stay positive. God Bless. Margaret

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

I have a sister in law in Phoenix, you let me know if you need to go there and I will get you set up Lisa. Heck, I will drive you to Phoenix whenever you need to! Let your friends help you!

I wish you girls were as strong as you, you need their support, but more then that you need to know that they are and will be okay if you need to go out of town. That has to be stressful.

Stay Strong!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lisa,
Like always you are in my prayers. I think about you so often and ask God to be with you and your family. Stay strong my friend. You are an amazing lady.

Aloha,
Kathleen

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