Fighting smarter

Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Fighting smarter

Postby rp1954 » Wed Feb 06, 2019 3:19 pm

I started to reply to "Is your life worth the fight" but have decided to open a new post.
Of course, (y)our lives are worth fighting for. But you need to know how, and start earliest.
Our backstory.

Cancer patients and our doctors often don't really know the smartest way to fight CRC on Day 1, and typically don't, can't or won't walk a full step extra towards a much better result with less fighting, less money expended, and less pain. Probably over half the stage 2 and 3 patients who do die of colon cancer recurrences, were seriously failed by current practices on the first day of diagnosis, and the following weeks, toward a genuinely curative result or a metastatic dx. For small dollars upfront, less debility and disability, and seemingly odd, many, many fewer treatment dollars overall.

Here are some major problems that most colon cancer patients don't overcome and cost them dearly:
1. Day 1, day of diagnosis until first major treatment .
A. Inadequate "basic bloodwork", add $75 - $300; I advocate even more bloodwork.
…....The most commonly missing initial "basic bloodwork": CA199, hsCRP, LDH, 25-hydroxy-vitamin D.
…....It could be that successful use of cimetidine etc, would benefit best with a liquid biopsy on Day1, before the cimetidine.
B. Lack of even simple neoadjuvant immune or targetable treatments, add $25 - $100. We've used more.

2. Immediately after surgery
A. Inadequate basic bloodwork , add $50 - $200; I advocate even more panels but to minimize prices paid
B. Lack of cheap pathology information on surgical/biopsy tissues, CA199 and CSLEX1; add $250-$700 if CA199 and CSLEX1 stains were routinely available for CRC
C. Inadequate (super)nutrition.

3. Late start of (metronomic) chemo (over 2 weeks after surgery). We got it down to 1 day.
…....Partly or largely due to inadequate (super)nutrition with complications from surgery and normal chemo.
4. Lack of cheap, targetable.(t) metronomic chemo options with aspirin(t), cimetidine(t) and PSK(t); perhaps celecoxib (stage 4), metformin. For lots less.
…....We spent $10,000 - $100,000 per month less, depending on how or what you count from other peoples' costs and billings.

5. Lack of close blood monitoring for chemo activity and cancer recurrence during and after chemo.
…....This is not so possible with Folfox/Folfiri, but it can be on metronomic immunochemo.
6. Lack of chemo near salvage (2nd) surgeries/treatments. We got the chemo gap down to less than a day before, and 1 day after.
…....Usually 3-6 wks of chemo are lost, both before and after. Partly due to metronomc immunochemo vs regular chemo, partly lack of (super)nutrition.

We've seen a lot of technical progress over the last 10 years at Colon Club, largely treatments like advanced surgeries, Avastin, Erbitux, engineered T-cells and PD1 inhibitors for seriously advanced cancer.

However recurrence prevention for earlier stages with low residual disease like stage 2, 3 and even resected 4a's with CA199/KRAS/BRAF mutant cells is surprisingly moribund. It reflects a huge failure to systematically apply and update easy-to-use technical answers on a large group of patients most likely to recur. This group probably represents about 2/3 to 3/4ths of stage 3 and 4a colon cancer patients. Early PD1 solo treatments are probably complementary population wise for MSI-H, largely outside the usual MSS population.

Life Extension(for Quest), Labcorp have national call in lines for lab tests. My wife uses a large local lab for blood draws at home.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: Bpaint, Vana3 and 6 guests