… may I ask what this part actually means?
rp1954 wrote:We had later events that appeared to shift the cancer markers' degree of response amongst CEA, CA199 and AFP, perhaps individual lesions shedding different levels of markers.
Also the other blood chemistry and extra but common labs can contain important hints and useful information if inflammation and chemo damage can be kept under control. I've posted much about our basic bloodwork goals and experience.
It means that we combine the analysis of cancer markers with the other panels to better assess and modify cancer recurrence risks and cancer environment, and ultimately, the immune and chemo treatment components. We addressed my wife's monitoring by a different, milder chemo plan more compatible with stable bloodwork, and broader, more sensitive bloodwork, designed for her
, starting as early as possible.
Patients in long term treatment for active cancer often face a drift in their markers and tumor cells, where CEA alone missed or delayed detection later than other combinations of marker(s) and panels, or scans. Often by the time detection occurs by other means (e.g. a scan later or symptoms), the surgery boat or some other treatment option may have sailed.
You wife can stay off chemo for the past year is great!!!
Yes, she's happy about it. Now she just wants to forget about mCRC and treatments, puts off monitoring as frequently and healthy stuff, where that is more a suppressed worry for me.
1) So I got my PET scan report just last week, the prior one in Feb was all clear, so for anything at all, everything happened in these 3 months. This one in May shows several spots with low uptake. The one near Thorax was the lowest, my Onc said probably reactive and false positive, not to worry too much.
2) The L paraaortic LN SUV is up to 8
. No measurement. No enlargement confirmed
3) L Common iliac LN uptake around low 4 too. No measurement. No enlargement confirmed.
4) The one in liver was inconclusive without any measurable lesion, even on the scan, it only shows a higher density foggy area, not a solid thing. Uptake was at low 4...
Your doctors are dependent on your scans - PET, CT and MRI(?) for size and character changes to monitor for cancer changes. They typically won't move without one (else you are talking things like biopsy, exploratory surgery, anomalies, or maybe liquid biopsy). You need better diagnostic information to break the dead lock. You seem to be missing CT or MRI size estimates that could be helpful to you
. We get that from the original radiology scan reports, which we pick up, rather than be filtered through (or out) by an oncologist first. Often a second opinion adds info or changes the picture.
Perhaps others have insight on bloodwork, CTC or ctDNA to push another diagnostic step here over the diagnostic noise from Folfiri-Avastin.
I'm currently on Vitamin D, Vitamin B complex, Curcumin, Reservatrol, Tagamet (800mg/day), Vitamin C, Milk Thistle, baby aspirin and Probiotic. I certainly would consult my doctor but at a glance, am I missing anything?
Lots of things and details? You should work with some experienced professionals for a personal plan
who look at your details. Then discuss them here. "Done right", the supplements and off label drugs should form a targetable/testable network of additive benefits, either at the supportive level, or, to also intensify chemo benefits at more aggressive usages, with different groups of patients linked to different treatment combinations and components.
I don't really agree with Tagamet taken willy nilly for long term treatment with immunochemo or post chemo followup without at least a CA199 determination. We always tracked CA199 in the bloodwork and eventually got the CA199 and CSLEX1 tissue stains done, to be sure of our
target. You apparently never overcame or bypassed the oncologist's resistance on a relatively inexpensive initial CA199 test (even just one
), where I count that as a mistake - CA199 detects a substantial metastatic factor (with CSLEX1) treatable with CIM but cimetidine has some contraindications for irinotecan, metformin and Avastin. In fact I'm surprised cimetidine didn't make your Folfiri+Av side effects more (too) harsh. That Kras WT probably increases the chance of your CA199 being ultralow, meaning CIM would be useless for you. It's important to try to line up your answers with people's CRC most like yours.