Oh, Tortuous CA 19-9!!!

[daisy9051]

argh! Tumor markers are beyond frustrating! How can a mere number wield such devastation on my life?! This board has been a life-saver for me...what a haven of SMART, thoughtful souls. I cannot tell you how much you all have helped this lurker over the past year.

In a nutshell: 4/2013 a 14cm left ovarian tumor is removed via laparscopic surgery. Cancer not even on the radar, CA-125 of 6. 1 week later: dx metastatic mucinous adenocarcinoma likely colon origin based on ck7-, ck20+, Cdx20+ immunohistochemistry and infilitrative type with "occasional" signet ring cell. Exhaustive search for primary begins: 3 negative colonoscopies (including one with blue dye) and 3 negative upper endoscopies (w/ extensive biopsies). All PET/cts/Mris negative for activity. Swallowed pill cam 2x to check for small intestine primary, but nothing found. So...Cancer of Unknown Primary, colon type (Stage IVa, NED)

1 week after initial surgery: CEA: 4.6, CA 19-9: 19. Xelox administered for 3 rounds, although no evidence of disease, but everyone feels uncomfortable with no treatment, save local onc (large top 30 research facility), recommends "watch and wait." MD Anderson recommends full 6 mos of FOLFOX. 3rd opinion (highest rated regional gyn onc) recommends 3 rounds of Xelox, which I decide is middle ground, and thus submit to this treatment.

Before chemo begins, 8/2013: CA 19-9: 6, CEA: .4, CA-125: 4. During chemo my CA 19-9 doubles to 12!! Chemo finished 10/10/13 and my CA 19-9 continues to rise 1 pt each month.
11/13: 13
3/14: 16
6/14: 19, CEA: .5, CA-125: 5

So, here I am with a slooow, albeit steady rise. I believe my baseline CA 19-9 would be considered 6. All labs were completed at the same lab, no change in assay method. This is typically indicative of disease activity, no? Last CT scan was totally clear.

rp1954 (I believe I have read every single post!) mentioned correcting for inflammation when considering tumor markers. My CRP is less than .1 and my fibrinogen is less than standard range, so I don't believe inflammation is affecting this marker. Aspirin therapy and curcumin do upset my stomach, but no other symptoms.

Is it time for me to accept I am having a "biochemical" recurrence and it is just a matter of time before disease shows up on scans? Has anyone experienced such slow, lengthy rise and if so, what was the outcome?

Is there anything I can do to stop this trend? I am already taking: 81 mg aspirin, 800 mg BCM-95 curcumin, PSP, 400 mg cimetidine, quercetin, coq10, vit b, vit d, green tea extract, 400 mg r-lipoic acid, and zinc. Integrative medicine has previously recommended ketogenic diet, but I have been too wimpy to truly consider it (no beer?! sooo not a cheese/meat girl, love my brown rice and legumes!) But, I am thinking it may be time to get more serious.

I am grateful for any insight. I am in the unfortunate position that Gyn/oncs aren't totally comfortable with my situation, and medical oncologists (which typically treat colon?) have REJECTED my case and have actually referred me back to gyn/oncology due to lack of clear colon primary. (sigh!) The 2 oncs I deal w regularly resist acknowledging CA 19-9 as a legitimate marker, so I am getting no help in interpreting the situation from my team. One onc even suggested no longer testing this marker!!?

THANK YOU if you have read this far. I know you all have a lot on your plate and my CA 19-9 woes seem minimal in comparison, but you all are the only ones that will truly "get" all of this.

[singingholly]

I don't think that our baseline is actually a line, but a range. It's very likely that your "baserange" goes from 6 at you personal bottomline to... Who knows... 20?... at the topline.
This is my guess because our body changes continually and a certain ammount of ca 19.9 is just physiological...
This is just my non medical opinion anyway, and mind that trend is important as well, more than the absolute values when numbers are so small. Keep it checked and you'll know if my guess about you baserange is correct, it's the only way I'm afraid.

[rp1954]

A complete initial survey should have both presurgical and postsurgical values. Based on both literature clearance rates for CEA and CA19-9, and the actual declines measured after surgery, the possibility exists that presurgical CEA and CA19-9 values might have been closer to 10 and 40 respectively.

Some have not been comfortable with the "wait and watch" approach and have had biomarker rises treated with chemo and CAM until biomarkers plateau or decline.

Question for medical support:
Does the CA19-9 rise represent a non cancerous process and which conditions do/can they rule out?
How many of them would bet against a steady increase in CA19-9? Is their criterion the nominal cutoff values for CEA/CA19-9 in preference to repeatedly rising series ?

The biggest question if the CA19-9 represents something going on is whether the current treatments stop metastasis. A localized, simply growing met may not be not so bad, might be cut out, RFA'd or zapped.

[singingholly]

As there is not the pre surgical value it is possible that ca 19.9 doesn't tepresent any indicator in this case...