Cea going up but still normal range

jen2012 said:

Thanks Phil - been thinking

Thanks Phil - been thinking of you, glad to see you posting and doing well!

Hubby's onc said the same thing about having patients whose CEA has gone up but they haven't found the cancer.   It's enough to make you crazy.    It just kept going up by .1 from surgery until August (.5, .6, .7, 8) and then Sept was 1.9.  Just seemed like a big jump all of a sudden and I'm hoping it's from his back pain (inflammation?)

Now I know what AA means about her posts not going in the right place!  grrrrr!

Between large scale vitamin D3, anti-arthritis supplements and celebrex, my wife got rid of a lot of joint and bone pains.  Has anyone ever tested your husband's blood levels of vitamin D?  Gross deficiency in stage IV CRC is very common and chemo makes it worse.  My wife needed over 12,000 iu of vit D3 per day while on mild chemo just to break even; she's been on 25,000-40,000 iu D3 with special K and minor monitoring for ~2¾ years.   In the face of a rising CEA curve, we added repeated tests like CA19-9, LDH, GGT, hsCRP, fibrinogen, PT-INR.  We've checked D-dimer, AFP and CA72-4 once at critical points to identify possible surprises.

A lot of "Olymphians" with distant lymph nodes, like your husband's para aortic lymph nodes,  have had low CEA and use CA19-9, too.   Even with low CEA, a clear bimonthly CEA trend upward over 4½ months long is likely significant and we move harder and faster on scans, tests and interviews (wife always on low dose chemo and therapeutic items, we insisted on a very successful second operation to remove a para aortic LN cluster previously left in).       

jen2012 said:

vit d
Tans... last vit d test was August. It was low 30s..low side of normal. He is going to start taking hit d again since we aren't getting much sun now. I asked onc about ca 19-9 and she said they don't test for that in Crc. I suppose I could push for it ...wonder if the ins will pay for it.

He has had disc issues in the past and he thinks that's what this is but its hard for me to relax and agree.

I asked onc about ca 19-9 and she said they don't test for that in Crc.

Usually true, and for insurance too, although our ins will pay for hospital labs (3-5 x higher) with the insurance dr's signature. For low CEA, this answer is a common indication of a dr's limited medical insight on global literature.   I shopped hard for a low cost lab with new equipment,  and we mostly pay cash. The inflammation is more likely to affect serum CA19-9 and some other values than CEA.   The other tests, LDH,  hsCRP (or ESR), fibrinogen and maybe D-dimer are worth asking about.   

Testing extra assays, once or occasionally, kind of a blood scan, might you help identify anomalies, opportunities and surprises.  I've learned the hard way that we (usually) can't go retake missing blood data but the old pathology (fixed tissue) samples from surgery can be re-stained.   That said, the low CEA probably means late (post surgical) cimetidine isn't useful right now.  The real issue is whether those lymph nodes are enlarged and what treatments would work best.

jen2012 said:

nothing is easy huh?
Thanks Phil. Having been thru radiation for tc he is hesitant to have lots of pet scans...and I'm nervous about what could sneak up on us. He tells me I need to have more faith and trust.

but then my doctor pointed out that cancers caused by treatment tends to show up about 30 years down the road (and that's talking about actual radiation tx, not just scans, which have a lot less of a kick).  I figure if I'm still here in 30 years to develop something new, it was worth it.

And again, I re-read my comment, and I really didn't mean to be sounding the alarm quite so loudly!  I just had such a close (and avoidable) call myself that I get a little worked up when I read something that sounds similar (even if it's probably not).