STAGE IV RC GUYS AND GALS

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rp1954
Posts: 1641
Joined: Mon Jun 13, 2011 1:13 am

Re: STAGE IV RC GUYS AND GALS

Postby rp1954 » Sat Jan 21, 2023 12:36 am

Early lung mets often are not particularly large contributors to CEA levels vs interferences.
Also your CEA may not be your best marker. Clearly your CEA range is lower than the CRC average.

There are several directions for making blood work more meaningful, or to at least clarify the story.

1. Monitor more of the traditional blood data, some more frequently.
2. Smooth the data in terms of active control of inflammation, chemo, sugar and other interferences to lower the scatter.
3. add more expensive, difficult or less specific markers

More frequent CEA data with inflammation markers would at least measure the scatter and part of the cause, a relative cold comfort. Post 2nd surgery, we achieved mirror smooth low CEA with anti-inflammatories and supplements, like IV vitamin C, other nutraceuticals, and baby aspirin (80-100 mg, more is likely not better), giving us more insight or certainty when things started to move ~13 months later, following supply loss of a chemo component.

A number of forum commenters have had to depend on CA199 as their best marker (using one brand of test if not the same lab). One even got their oncologist to do the tissue stain for CA199 to get both the oncologist and insurance on board for monitoring CA199 since the CEA was useless.

For some fraction of CRC patients, CA199 is a more prominent CRC marker but CA199 gives relatively noisy data from various interferences. US medicine studiously ignores CA199 for CRC and US drs know few specifics about CRC and CA199 (some EU countries do use CA199). This stmt probably includes your pancreatic cancer oncologist where CA199 is the primary marker.

LDH, a liver panel, is likewise often sensitive to cancer mets although it is a non specific marker.

DNA blood tests are expensive and more specific, but often not as sensitive as CEA for most people, but may provide re-assurance where CEA fails. I would clarify about potential chemo interference with any particular DNA blood test version and timing.

All of these work best with series in combination, more data sooner.
Traditional cyclical chemo itself is an interference with blood data that has to be considered.
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

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Sat Jan 21, 2023 12:37 pm

rp1954:

Thank you for sharing your knowledge and wisdom regarding CEA/CA199 testing. I think CA199 may be a better marker than CEA for me. I plan on having CA199 test performed next week and then, regularly, along with CRP. I know that CRP is only a basic test for underlying inflammation but I think maybe it would be a good starting point. Also based on my research, I understand that neutrophil/lymphocyte ratio (NLR), platelet/lymphocyte ratio (PLR), lymphocyte/monocyte ratio (LMR) are inflammatory markers that should be monitored as well.

It's wonderful that you and your wife achieved success with low CEA with anti-inflammatories and nutraceuticals. In the past, I have taken low dose aspirin along with turmeric and ginger for its anti-inflammatory properties. I haven't tried IV-C but have heard about positive outcomes with it especially in individuals whose cancer is RAS mutated.

Thank you also for the suggestions of the LDH panel along with DNA tests. Those tests are definitely something to consider and include in my spreadsheet as well.

Have a great weekend,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Sat Jan 21, 2023 12:45 pm

Stu,

Thank you for the kind words. Yes, I am hoping the LARS will improve soon.

Happy New Year!

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

User avatar
beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: STAGE IV RC GUYS AND GALS

Postby beach sunrise » Sun Jan 22, 2023 4:02 pm

Your update makes me happy you successfully had met removed!!! Feels good don't it!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Mon Jan 23, 2023 8:24 am

beachsunrise:

Awww, thank you. Yes, it does feel good to get the met out finally.

Good luck to you with your consultation in Germany. I hope you are able to get the treatment that you need.

Have a great week!

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection


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