MetastaticEquilibria wrote:He also measured CEA and CA19-9, both of which were in the low normal range,
I'd say the two of the most important values you could mention here or in your signature are the CEA, CA199, with inflammation marker(s) at dx and post op, along with more dated way points. No CSLEX1 test was ever mentioned?
No room in sig, so will summarize here. For inflammation marker, I’ll list CRP:
CEA 1.4, CA19-9 5.8, CRP unknown at initial diagnosis
CEA 2.9, CA19-9 19, CRP 0.01 3 months post-op
Then as liver mets grow and shrink repeatedly CEA goes up and down (max 223, min 2.4) as does CRP (max 35, min 0.3), while CA19-9 stays in mid-teens. The pattern changes once lung mets appear, with CEA and CA19-9 going up and down with lung mets (CA19-9 at larger amplitude than CEA), and CRP rising to 2.5 now.
In general, it has seemed to me that pelvic tumors don’t affect tumor markers much, liver mets affect CEA but not CA19-9, and lung mets mostly affect CA19-9 and to a lesser extent CEA. Why these things should be, if they are really true, I don’t know.
So Stage 2 at this point, for which follow-up chemo was deemed optional, but recommended by the surgeon due to the LVI.
So that was a 2a, 2b or 2c or given as a TNM?
I was put on UFT+UZEL (I live in Japan, and this is a commonly-used 5FU prodrug here -- rp1954 is familiar with it), "just in case."
I assume 4 weeks "on, 1 week "off" (we used continuous + more adjuncts); any dosages for UFT and LV to show? No mention of PSK or vitamin D by the doctors ?
Yes, 4 weeks on, 1 week off per cycle
300 mg UFT, 75 mg UZEL per day. (Which is about half the standard full dose for my BSA.)
No mention of PSK or Vit D. Oncologists here don’t generally go for supplements or even dietary advice. The doctors who do push supplements etc. tend, unfortunately, to be on the quackish side. I have heard of various supplements on this forum, from other patient blogs, and from various friends and relatives, of course. I’ve even been known to try a few, but usually cut back after a while when I become uncertain or concerned about what other effects they may be having.
The diagnostic cutoff point for CA199 is developed for pancreatic cancer diagnosis. Roughly speaking for already dx'd CRC patients, there are about 4 ranges of interest at dx and post op: 0 - 2, less than about 12, less than about 22, ca 22 to ca 34, more than 34. The most CA199 utility assumes low or stable CRP, ESR, TSH, HgbA1C, liver panels, no interfering benign disease values.
Post-op, my CA19-9 was pretty much always in the teens (your third range) until the lung mets showed up, no matter what happened with the liver mets.
I was put on Xeloda + Avastin for maintenance, though soon had to stop due to falling platelets
Still no mention of PSK? We used PSK, liver products, bone broth for platelets with UFT+LV+ASA+CXB (celecoxib). We held FIsh Liver Oil for alkyl glycerols in reserve, perhaps more potent than bone broth, never had to try it, her platelets stabilized with balanced chemistries and chemo.
I have tried so many things to raise platelets, without obvious success. Papaya extract (there are some papers on that), D, B-12, chinese medicine. I do eat a lot of liver paste (I like it anyway), which has helped my anemia I think, but not sure it has done much beyond that. Heck, there was even a paper which suggested anemia encourages platelet production, so maybe it has been counterproductive!
Bone soup is an interesting idea. Perhaps an excuse to eat more tonkotsu ramen? (Made with pig marrow broth, tasty.)
Hadn’t heard of fish liver oil for platelets.
The blood experts at the cancer center looked into my case, and concluded I have suppressed bone marrow primarily from the pelvic radiation. (Which was necessary, so I cannot complain.)
Of course, I was also on oxaliplatin for most of a year, which is known to cause thrombocytopenia, possibly due to splenomegaly caused by back-pressure from the liver caused by damage from the oxali. And in fact I have gone back through CT data and measured the volume of my spleen over time, and it clearly started increasing in size at the same time I started oxaliplatin. There was also an extra “bump” in size after the proton radiation in the liver. It eventually about doubled in volume over time, though has recently started shrinking again, and is now only about one-and-a-half times as big as it originally was. And my platelets have finally started edging up again. Still low, but at least above the cut-off for getting more types of chemo again.
Then CEA rose and a 3rd liver tumor was found, in an area that had not been previously irradiated. So back for another round of protons on that spot.
I'm wondering how much this might be associated with inflammations. Any hints on hsCRP, ESR, ferritin for occasional inflammation panels?
CRP is going up right now. Don’t have hsCRP, ESR or ferritin numbers. As for where inflammation might be occurring, don’t know but can think of many candidates: the lung tumors, whatever is happening in my liver to cause the recent bad liver numbers, my Vectibix rash (quite severe this time), maybe even delayed lung inflammation due to being in the path of the recent proton irradiation? Who knows. (Though that gives me some ideas of stuff to read up on and think about — thanks.)
The two remaining common liver panels are AFP ("HCC marker") and PT/INR. The Chinese seem to be putting more effort in measuring AFP for CRC patients, and AFP caught a slow runaway for us, that wasn't too bad to tamp down. Any whole sets of blood data (e.g. CBC+liver/chem+markers), say at dx, post-op and now might be useful.
I have kept all the blood data ever taken on me, though don’t think I have ever heard of AFP or PT/INR.
Dr. Edward Lin had some really impressive early results with 5FU+CXB for recurrent/stage 4 patients. I hesitate to mention our answers, but rather than compete with FOLFIRI with 5FU+CXB alone, we found it necessary to add more stuff to make 5FU+CXB work. My view is that we have to be prepared to find and add treatments (surgery, chemistry, RT) until the cancer is visibly stopped in the scans and the bloodwork.
I actually wrote to one of the ADAPT study authors last year (not Lin), who said they were no longer recommending the ADAPT protocol. This was after their second study got cut short, so I surmise their follow-up results weren’t as encouraging? Don’t actually know the story, but stopped looking into it after that.
Thanks, you have given me some ideas for digging into the data a bit deeper. More fun with data analysis!