Mixed bag kinda day: progression, genomic results, and trial

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Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Mon Dec 03, 2018 8:10 pm

DarknessEmbraced wrote:I'm sorry about the new liver lesions!*hugs* I hope your chemo and clinical trial go well!*hugs*

Thank you!
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

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Re: Mixed bag kinda day: progression, genomic results, and trial

Postby rp1954 » Thu Dec 06, 2018 8:36 pm

Cmac1275 wrote:Anyway, I asked my onc about testing for CA199. She kinda poo-poo'ed it as not being very useful for me. We'd considered it when we believed my CEA markers were no longer reliable. But, CEA is increasing and correlating with my new liver mets and growth.

Yeah, standard wrong or non-informative oncology answer.

The first CA199 test is always useful, albeit sooner, -est after dx is more useful. The first question is less than or more than 2 (Y/N). If CA199 is less than 2, then further usage is not useful.
Since you're KRAS mutant, CA199 is likely greater than 2. Next is whether CA199 is greater than 19 or 22, and where hsCRP, ESR, HgbA1C, and TSH are.

Many oncologists are biased by (1) rote answers from the US texts, (2) limited longitudinal series experience even if "tried" sometimes - CA199 is often erratic, amplified by inflammations, some procedures (e.g. RFA), heavy cyclic chemo (Folfox, Folfiri) injury - when an oncologist is more likely looking too late to get the best initial data, and in between treatment eras' influence.

As far as my dosages, here's what I'm taking:
Modified Citrus Pectin: 9.6g / day
Theracurcumin HP: 1200mg / day (provides 30% curcumin per dose)
Fermented Cod Liver Oil: 1500mg / day
Sulforaphane Glucosinolate: 70mg / day
Vitamin D3: 4,000 IU / day
Conium maculatum 200ck: 5 pellets each week. Don't know exact mg content.

Eeeeek, the previous detailed Life Extension protocols for CRC are missing - e.g. what used to be 9-10 pages has been trimmed down to 4 pages without cimetidine, celecoxib, and dosages summarized. I smell our tax dollars at work, courtesty of FDA, trimming our 1st Amendment Bill of Rights again. Except for the MCP, I would count your "stack" as only supportive and less than half the old LEF list, which we use substantially higher doses in a number of items to make biomarkers change more favorably.
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

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Re: Mixed bag kinda day: progression, genomic results, and trial

Postby juliej » Thu Dec 06, 2018 8:59 pm

Cmac1275 wrote:My oncologist was telling me how incredibly detailed and thorough Dr. Kemeny is. When my onc and I were discussing the possibility of Duke offering HAI, she cautioned me about the success rates at other hospitals that perform HAI implants. She said, Dr. Kemeney's results are basically unmatched. Having spent time with her in NYC, my onc understands why. That woman pioneered this treatment. Made a career out of it, actually. My onc told me she literally has binders upon binders of data, notes and algorithms to treat different situations. I'm glad a couple of MSK surgeons will be working with the oncology team here at Duke. Their experience will be key once they start performing the procedure.

You're right about Dr. K having a ton of data from literally years and years of patients with HAI pumps. Because of all that information she knows how to tweak the chemo in the pump. She makes her own "cocktail mixes" of drugs if your liver has any issues with the FUDR. There are about a dozen places in the country that are in the process of implementing an HAI pump program, but she is the gold standard that they all learn from.

You mentioned your onc doesn't approve of testing for CA199. Make sure you at least get tested for LDH, in addition to your regular labs. It's an inflammation marker and helps to track whether mets are increasing or decreasing.

I'm rooting for the new regime (either FOLFIRI + Avastin or FOLFIRI + ABT-165) to shrink those mets so you can get the pump!

Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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