MetastaticEquilibria wrote:I didn't believe anything was really wrong) who found blood in a stool sample. He also measured CEA and CA19-9, both of which were in the low normal range,
So Stage 2 at this point, for which follow-up chemo was deemed optional, but recommended by the surgeon due to the LVI.
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."
However, eventually the liver tumors started going out of control again, and after looking around at proton therapy options, we found a hospital that was willing to shoot my liver. This was done just in the nick of time -- a week later and I probably would not be here today. But in the event, the two big tumors were, apparently, successfully fried, and things were looking good for a while. CEA came down to within normal range (CA19-9 had never left normal range), and nothing showed on the CT scans except for the necrotic liver tumors.
I was put on Xeloda + Avastin for maintenance, though soon had to stop due to falling platelets
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.
But CEA didn't stop rising, and CA19-9 started rising as well, which it never had before. It was then found that 3 tiny tumors had taken up residence in my lungs. My platelets were still low, so I was put on Vectibix monotherapy. Which brought CEA and CA19-9 down some, and shrank the lung tumors a bit. Plus my platelets started coming back up, which might put some more chemo options back on the table.
Then yesterday, boom, CEA up from 7 to 13, and CA19-9 up from 13 to 105 (!). Plus liver numbers starting to look worse: ALP, AST, ALT, LDH, gamma-GTP, you name it -- everything except bilirubin, which actually went down.
But it is obviously not something good...Depending on what is found, it is likely I will be switched to a new chemo. The next likely candidate is FOLFIRI, though as I am homozygous for UGT1A1*28, I'll have to take it at a reduced dosage to reduce the risk of having my neutrophils get clobbered.
rp1954 wrote: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?
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 ?
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.
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.
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?
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.
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.
Jolene wrote:
Re: Vitamin D
Vit D may not be as quakish ? In fact, a thread has recently been started on this board with one of the poster posting research from Yale on the effectiveness of Vitamin D for colorectal patient
Rock_Robster wrote:Also the very recent SUNSHINE trial at Dana-Farber, starting at 8,000 IU/day then sustaining 4,000 IU/day:
https://www.dana-farber.org/newsroom/ne ... al-cancer/
Also to your point about Neulasta/Filgrastim/etc., when I asked my onc about it (when my neutrophils were diving), he said it wasn’t really SOC here, that its benefit was not reliable and it has unpleasant side effects. He preferred just to delay a week. I also found this odd given some places (esp. in US) seem to routinely offer it.
Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”
Users browsing this forum: Google [Bot] and 77 guests