Need some help

Fight for my love · January 2015

Hi dear all, we went to see doctors to get the CT scan result, it was ok. The lung nodule changed from 2mm to 3 mm, but doctors say they compared the current scan with previous one, they don't think there is any difference, it is from imaging.He still has some fluid in surgical area, but it is a kind of normal due to the recovery, no infection. Other than that, everything else looked ok. This was the first CT scan after my husband's pelvic exenteration on Oct 29, 2014. But he is suffering quite bit of pain from surgical area on his behind. We didn't get the blood work results because it was not ready when we were at the hospital, but I just found out his CEA became 13.1 online through patient account, it really scared me quite a bit.His cea was 4.6 on Nov 17, 2014, but now it is 13.1. I am really scared. I definitely will make my husband call doctors' office tomorrow to see what doctor will say. I am just curious if any of you had the same experience ? CT scan was clear, but cea got elevated. Any inputs will be appreciated. Thank you so much again for the prayers, good thoughts and good wishes.

Trubrit · January 2015

It could go either way

I had a clear CT Scan but my CEA jumped to 10.9 so my Oncologist ordered a PET Scan and found my liver tumour.

I'm sure there are other factors that make a CEA rise, espeically seeing that your husband has been through so much recently. So keep the faith until you hear from your Doctor.

Sue - Trubrit

Fight for my love · January 2015

Trubrit said:
It could go either way
I had a clear CT Scan but my CEA jumped to 10.9 so my Oncologist ordered a PET Scan and found my liver tumour.

I'm sure there are other factors that make a CEA rise, espeically seeing that your husband has been through so much recently. So keep the faith until you hear from your Doctor.

Sue - Trubrit

Thank you so much, Sue.

Thank you so much, Sue.

janderson1964 · January 2015

I wish I could help you but

I wish I could help you but CEA has never been a good indicator for me.

LindaK. · January 2015

CEA not always an indicator

My husband's CEA was never a good indicator. Last January while he had a large tumor growing in his small intestines, his CEA was below 1.0. Special GI Oncologist said CEA is only a good indcator 50% of the time so we were never concerned with it.

Hopefullly his doctor will follow up with another scan or scans to rule anything else out. Sometimes those much awaited appointments are bitter sweet, not sure if you should be happy or nervous. It never really ends, the worrying.

Linda

Fight for my love · January 2015

Trubrit said:
It could go either way
I had a clear CT Scan but my CEA jumped to 10.9 so my Oncologist ordered a PET Scan and found my liver tumour.

I'm sure there are other factors that make a CEA rise, espeically seeing that your husband has been through so much recently. So keep the faith until you hear from your Doctor.

Sue - Trubrit

I am not so sure how good cea

I am not so sure how good cea is as an indicator for my husband, because I remember during his diagnosis, his cea was 48, after a couple of weeks with no treatment, it became 33. But this definitely makes me concerned.

Fight for my love · January 2015

Thank you both, jeff and

Thank you both, jeff and lindak. I couldn't sleep last night. Lindak, just like what you said, I thought we would take a break from here, but it seems it is not ending yet. As a wife, I will never stop worrying about my husband's overall wellbeing, but after living with fears and worries for such a long time, it it really draining and exhausting.

tanstaafl · January 2015

looking harder

In periods of elevation, like CEA above 10 or doubled, we accelerate blood testing to about 2 per month. The additional biomarker data allows us to test formula changes for chemo and supplements, too. We have long used CA19-9 and LDH as additional biomarkers. We use hsCRP (immediate period) and ESR (longer term) to evaluate inflammatory influences on the biomarkers.

Since my wife is conventionally considered incureably metastatic, we treat with immunochemo off the biomarker numbers directly, rather waiting for an imaged met, when physical removal would be attempted. Even if we didn't have chemo, she'd be stuffing off-labels like cimetidine, aspirin, celecoxib, PSK and vitamins like D3, K2, B6, coQ10... and flavonoids.

Fight for my love · January 2015

tanstaafl said:
looking harder
In periods of elevation, like CEA above 10 or doubled, we accelerate blood testing to about 2 per month. The additional biomarker data allows us to test formula changes for chemo and supplements, too. We have long used CA19-9 and LDH as additional biomarkers. We use hsCRP (immediate period) and ESR (longer term) to evaluate inflammatory influences on the biomarkers.

Since my wife is conventionally considered incureably metastatic, we treat with immunochemo off the biomarker numbers directly, rather waiting for an imaged met, when physical removal would be attempted. Even if we didn't have chemo, she'd be stuffing off-labels like cimetidine, aspirin, celecoxib, PSK and vitamins like D3, K2, B6, coQ10... and flavonoids.

Thank you very much for your

Thank you very much for your information. My husband's doctors never offered CA 19-9 test, I heard about it though. So all we need to do is just simply request CA 19-9 test with the doctors? I will start to add all the supplements back to my husband's diet soon,we had to stop all the supplement because of chemo and surgery.

Fight for my love · January 2015

Doctor office called my

Doctor office called my husband back, doctor was also surprised that CEA got elevated, because both the pathology report and CT scan were good. Doctor will order a PET scan soon, he says he needs to do something, so PET is still probably the best approach. His concern is my husband is still recovering from the big surgery, if there is any inflammation, that might not help the imaging either. But we still got to do it. I am just praying that even if there is something there, it is going to be a minor problem that can be surgery removed and easily taken care of. My sincere thanks to all of you for your information and warm input. Thank you.

UncleBuddy · January 2015

Fight for my love said:
Doctor office called my
Doctor office called my husband back, doctor was also surprised that CEA got elevated, because both the pathology report and CT scan were good. Doctor will order a PET scan soon, he says he needs to do something, so PET is still probably the best approach. His concern is my husband is still recovering from the big surgery, if there is any inflammation, that might not help the imaging either. But we still got to do it. I am just praying that even if there is something there, it is going to be a minor problem that can be surgery removed and easily taken care of. My sincere thanks to all of you for your information and warm input. Thank you.

CT vs PET

CT scans weren't helpful with mY brother's liver tumor. It showed the lung nodules but not the liver tumor, so they have to do PET scans on him, too. CEAs are reliable for some, but not others. Try not to worry.

Lin

tanstaafl · January 2015

Fight for my love said:
Thank you very much for your
Thank you very much for your information. My husband's doctors never offered CA 19-9 test, I heard about it though. So all we need to do is just simply request CA 19-9 test with the doctors? I will start to add all the supplements back to my husband's diet soon,we had to stop all the supplement because of chemo and surgery.

tests

It's nice to get the dr's support but you can order blood tests online in most states. There are two major lab corps in the US and a local branch is likely your doctor's lab, too. It's best to try to get all tests from the same lab but I would not stop because of it.

The first CA19-9 near a pre-surgical or pre-treatment peak is important because of long term targeted cimetidine options, and has some utility for Avastin prediction too. An ESR and LDH are useful support too, at least a baseline with the CA19-9. We do even more tests initially, monthly and quarterly/semiannually to try to greatly reduce the odds of metastases slipping through for surprises.

Fight for my love · January 2015

tanstaafl said:
tests
It's nice to get the dr's support but you can order blood tests online in most states. There are two major lab corps in the US and a local branch is likely your doctor's lab, too. It's best to try to get all tests from the same lab but I would not stop because of it.

The first CA19-9 near a pre-surgical or pre-treatment peak is important because of long term targeted cimetidine options, and has some utility for Avastin prediction too. An ESR and LDH are useful support too, at least a baseline with the CA19-9. We do even more tests initially, monthly and quarterly/semiannually to try to greatly reduce the odds of metastases slipping through for surprises.

Hi tanstaafl, thank you very

Hi tanstaafl, thank you very much for the great information.I will keep it in mind.

Fight for my love · January 2015

UncleBuddy said:
CT vs PET
CT scans weren't helpful with mY brother's liver tumor. It showed the lung nodules but not the liver tumor, so they have to do PET scans on him, too. CEAs are reliable for some, but not others. Try not to worry.

Lin

Thank you, Lin.

Thank you, Lin.

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