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? for those with high CEA's

cjf2006
Posts: 84
Joined: Dec 2007

I'm stage 4 with numerous mets to liver and lungs. My CEA has always been bonkers. After a short break from folfiri/Avastin it nearly double to 429 after the first post-break treatment. Now, it is 361. My question is, for those in the long haul and with high CEA's, do you ever see it going down significantly and if so what regimen are on? ie what has been working for you? Thanks.

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Your CSN Suppor...
Posts: 200
Joined: May 2008

Dear cjf2006,

The easiest way to locate other CSN members with similar experiences is to type keywords (such as "colorectal cancer," "high CEA," "elevated CEA," etc.) on the search bar at the top of the home page. You can refine your search by clicking on the “Advance search” link listed underneath the search field. The major categories of content on CSN are blogs, discussion boards, personal pages, etc. For example, if you are looking for a specific resource on the Resource Library, you can limit your search to resources only by clicking on the "resource" and "advanced search" button at the bottom of the "advanced search" box. Remember that you must be logged on if you want to post anything on a discussion boards, view personal pages, use the chat room, etc.

Cordially,
Your CSN Staff

pamness
Posts: 515
Joined: Nov 2007

Dear CSN staff: Your reply was entire unhelpful and a little condescending. CEA is an odd thing and very personal and differs from person to person. Urging someone with this concern to look at high CEA and elevated CEA is OK, but not that helpful. I know, I have been there and I am there now.

Does someone look at this automated type response. And if they do, have they been there?????

Pam

changing2
Posts: 118
Joined: Jul 2008

Hi,
First let me say thank you for all you do! Perhaps you could place a speak box above area near "search"....as a reminder, of exactly "how to" search for answers . We all certainly appreciate any information you can provide, to say nothing of your taking time to read each and every post! However I do believe as Pamness mentioned, that it is difficult to read the same blanket answer written to several people on the same day. I would think that the person whom it is adresesed to may feel invisible, given the fact that they came to this site in order to make contact with another individual who has the same experience and to interact with them. I certainly understand your intent and appreciate it more than you know yet I too am here to contact others one on one verses doing a "Goggle" for information. Sorry to ramble...just think a reminder at the top of the page would be enough. I may be wrong...perhaps will voice their thoughts.Thanks again!

changing2
Posts: 118
Joined: Jul 2008

I can't relate to having a CEA that runs bonkers as mine has always been on the money.It rises when there is a problem and decreases when treatments are effective. HOWEVER with those who have inconsistent CEA's like yours ....it presents more of a challange and from what I understand you can never rely on the those results...up or down. Hopefully others with the same issue will chime in soon. How do you feel? I can usually tell when things are changing by how I feel....not on a daily basis but after a few weeks...I have an idea when it's up or down.(Sometimes the blahs was related to sour blood readings and a shot was needed)I'm sorry you're going through all this ....that CEA is a bugger...so I'd go with what my body is telling me. I'm praying for you! Take care.

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