Jan 03, 2013 - 9:41 am
The more I read here, the more I wonder about the level of care I am getting. Just to recap, I am stage 4 with mets to LNs, liver, lung and omentum/peritoneum. I was diagnosed in June 2012, and had surgery on June 4th. The initial plan was laproscopic resection and reconnection of the colon, but the surgeon was unable to remove my tumor (sigmoid location), so he did a loop trannverse colostomy (left side right before the colon desecnds) and sewed me back up. I was told at that time that chemo was the only treatment option for me, as I had many small and diffuse tumors, including on my liver. The surgeon did remove several of the tumors on the omentum. I went to NW Memorial in Chicago for a second opinion on the chemo treatment, and I continiue to go there for my CT scans. They agreed with the local oncologist that 5FU + oxaliplatin + Avastin was the correct chemo regimen (I have a RAS mutation, so no Erbitux for me). I took 5 rounds of 5FU + oxy, and 3 rounds of Avastin, and then had my first post tx CT scans, which showed no growth, no new tumors, and shrinkage in some tumors of 40+%. I continued on my chemo regimen for an additional 7 tx (completed yestertday) with CT scans scheduled for Monday, Jan. 7th. Maybe there will be more discussion after the results are in, but here are a couple of concerns:
1. I have never had a PET scan, which seems common for most on here.
2. They do not monitor my CEA levels. Granted, my level was low at diagnosis (I think around 6), but they have never measured since.
3. I have taken 10 tx of Avastin, but they have never done a urinalysis to check for protein leakage from my kidneys, which seems common for people on Avastin.
4. I read my CT scan reports, and there has never been any mention of small, diffuse tumors on my liver, which they said I had at diagnosis. There is a one large tumor on my liver (approximately 4 x 3 cm), but that is the only one ever mentioned in the CT scans. They also mention my primary colon tumor, and list the lung tumors (approximately 6 total in both lungs, all under 7mm in size), as well as any LNs that look abnormal. The CT scans also mention any other abnormalities they see (i.e. a non-obstructing kidney stone, whether or not I have pelvic fluid, any and all spinal degeneration, which I have a little of apparently, etc...).
For the record, I have never had any abnormal kidney function indications on my bloodwork, and I have been feeling very good throughout all my tx, I did have a complicating bile duct blockage which they fixed via a biliary drain and now a stent, so I seem to be doing well on the chemo they are doing. However, I just wonder if I am getting the maximum level of treatment and diagnosis that is available (i.e. RFA, radiation, HIPEC, etc...)??? It appears that the plan after the CT scans will be to continue with 5FU + Avastin if I am not NED (but have continued stability/shrinkage) or if NED to go to Xeloda instead (not sure if with Avastin). I get the feeling that my initial diagnosis was pretty grim, which may be why I have not been offered more options, but maybe I will surprise my docs and then will be a candidate for other options. Thanks for any help or advice you can offer. I just want to make sure I am not missing out on anything that may be important.