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some questions

zhguo48
Posts: 23
Joined: Dec 2007

Hi you all!
I come to this board almost every day, although I don't write much.
Today I aws told that my CEA is 3.4 by my Dr.'s office. A month ago it was 2.9. After my third surgery April this year, the number was 0.8 - 2.3 - 2.9 - 3.4 while I was taking xeloda. The good thing is the last CT I had less than two months ago was negative. My CEA number has never been rocket high (< 15 ) with or without tumor in my body. I think I might need to prepare for the cancer comes back again, hopefully it will be Operable.
My questions are the follows:
1, How many surgeries have you had, and for how long?(I've had three in three years.)
2, Does your CEA number go up and down? (My number only take one direction up when the cancer comes back.)
3, When my port is being used I have to lay down otherwise there would be pressure around the port, sometimes the skin around it would pop up. I was wondering if anyone had similar experience?
4, Has anyone noticed that this board is clearly the largest group among all different cancer groups, I was wondering why?
Thank you for your replies!
Faungg

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

Hi Faungg,

1. I have had 2 surgeries. One colon resection and one liver resection with a ovary removal thrown in for free. dx 8/07

2. My CEA before surgery 1 was 124...After chemo but before surgery 2 it went down to 16. After surgery 2 it has gone down to 2.1 and is now at 1.3.

3. I sometimes have to lay down to access port for blood draws but it does not pop out. I have a "power port", Its the new sexiest thing in body bumps. And you all thought new boobs where the hottest bumps.

4. I think it is the largest group because of three things. There are a lot of people being diagnosed (last count is 150K a year) with this disease. Treatments vary from person to person. One person may just need a colon resection while others may need radiation, surgery and chemo. We also know that treatment is changing. For example my oncologist used to recommend just last year 8 months of chemo then a liver resection. Now he recommends 2 months of chemo then the resection or do the surgery immediately then chemo. It is also my personal opinion that the breast folks have lots more resources to access info and network. We have fewer. We are also living longer with the disease because of new treatments.

My 2 cents,

Jennifer

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

1. so we aren't counting port placement, port removal, port placement or retrieval of a catheter from first port that broke free and languished in my heart, requiring a catheter insertion to retrieve it, I am at 2 surgeries: the initial resection, then in through the initial incision just shy of 2 years later for full hyst, omentumectomy (??), appendectomy and whatever other stray items they found while they were in there!
2. Mine doesn't go as high as I see others, but when it starts heading up, generally it indicates a recurrence of my cancer.
3. My first port had dual access sites; one on each side of it. It was very positionally picky and I usually had to hold my arm a certain way, etc. Of course, the 6 inches of catheter that broke off it and flopped about my heart until it was retrieved was a bit of a drag! My current port is a single access and I have no problems. Once they had to lay me back to get the blood return, but nothing else.
4. I've heard we are the most active, but I've never actually bothered to check any of the other boards.
Mary

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

H Faungg,

I had only one operation after dx. Stage 3 Dec.2005. Had my tumor out the day after dx. They wouldn't even let me leave the hospital after the colonoscopy and had the nerve to ask me to do the prep again. OF COURSE I said NO!!!. LOL. I then had a blood clot in my arm from my port so had the old one removed (w/o anestesia and don't recommend it!) and another put in the same place with longer line in the vein.

My CEA was a good marker and was 164 when had my resection. It is down to under 1 now. Some people it is just not a good marker.

I had a port in my upper left chest and it was only single access. I never had to lay down but did have to turn and cough once in a while to get a blood return.

I think we are the most active because we have such wonderful people here. We truely want to help eachother. We even had CSN poll us to see if we would help on the other sites that are generic and not cancer specific. I guess we are just a talkative bunch???

My two cents. LOL

Lisa F

pamness
Posts: 513
Joined: Nov 2007

I was diagnosed January 2007 with stage 3A, had surgery, chemo, radiation. My port was put in 2 weeks before chemo and was never a problem. It was on my right side (I could sleep on my stomach with it, unless I was hooked up to the 5FU pump). It never really bothered me when they accessed it - it hurt a bit but just for a second or two.

My CEA has never been above 7 or below 2.4. I have been ned for a year. My last CEA was 4.3 - but my CT was negative - that was two months ago. I go back in 3 weeks for another CEA and another CT. For some people it isn't a good indicator (I am hoping I am one of them).

Good luck, I hope your cancer does not recur.

Pam

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