1. < Colorectal Cancer

CEA up - guessing not good

Posted by chuckmii @chuckmii, Jan 14 8:02pm

I have posted on here a lot over the last 7 months since my wife’s diagnosis and some things have been good and some bad. She is still hanging in there but today’s blood test I think is not good news.

Stage 4 colon cancer, liver, peritoneum and adrenal glands. Recently spent 5 weeks in the hospital due to obstruction and sepsis. Had emergency colostomy.

Her highest CEA before we started treatment in July last year was 256. It went down the entire time on the first 6 rounds of chemo, all the way to 111. First blood test after hospital and recovery was 122. This was 2 months after her last chemo round and right before we started treatment again. We thought that was overall pretty good. It went up a little but figured not a lot of spread.

Round 7 was 5FU only, no oxiplatin due to severe side effects from last time. CEA today was 348! Oncology appointment is Wednesday but I am so devastated right now. Can anyone share why I shouldn’t be? I have read that sometimes it can spike because it is dying and floods the body with the antigen but with her history, I don’t think that’s true. Thinking the doctor will want to add in other drugs but that gives us more to think about. Just very frustrated tonight.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 21 8:49pm
In reply to @garb "I'm new to this group, hope my comments are helpful. Me stage 4 diagnos last july..." + (show)
@garb

I'm new to this group, hope my comments are helpful. Me stage 4 diagnos last july with tumors spread to liver, adrenals and lungs. I suffered wicked late onset diarrhea as well but I think I am finally getting the hang of it.
On chemo day I take 8 mg of dexamethazone and 8mg of zophran. At night I take 4mg of each then usually 4mg of zophran twice a day.
Key for my energy level is hydration, so I have a standing order for saline drip anytime I want it and use it often.
Plus I immediately change my diet to basically white: toast, yogurt, rice, cheese.
I was wiped out, had severe muscle wasting and couldn't walk, and probably felt like your wife is feeling now.
Now I'm driving, walking and have friends over for meals.

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Welcome, @garb. Your message offers hope. Am I understanding that you are on maintenance chemo and continue to receive chemo? When do you typically need or request the saline drip? When is it most helpful for you?

REPLY
garb | @garb | Apr 22 12:50pm

I'm still receiving chemo, but we reduced the ironotican dose by 10%, which may be a reason for improved quality of life. Had my usual 3 month CT scan Saturday, all is stable. Oncologist said last month that we can go to a maintenance regime if I'm stable, hoping this transpires.
I have a chest port, so saline iv is relatively easy, i ask for it 1 or 2 times a week if diarrhea gets a way on me, which is rarer now that I recognize the symptoms

REPLY
sueb4bs | @sueb4bs | Jun 16 3:05pm

How are things going for you and your wife?

REPLY
1 reply
chuckmii | @chuckmii | Jun 17 3:28pm
In reply to @sueb4bs "How are things going for you and your wife?" + (show)
@sueb4bs

How are things going for you and your wife?

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Unfortunately not great. I will be creating a new thread as well but no change in colon tumor, pelvic one is a bit smaller but there are multiple new mets on the liver that continue to grow. Lab work yesterday showed CEA shot up 182 in the last 2 weeks now at 547. We have discontinued IV chemo as the side effects are either too bad or they are no longer effective. We are waiting on Lonsurf (chemo pills) to be approved by insurance and will then start that. It was going to be a combo of lonsurf and Avastin but the Avastin is causing bad side effects again (nausea, loss of appetite, weight loss, kidney issues among other things).

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