STAGE IV RC GUYS AND GALS

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rp1954
Posts: 1855
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

utahgal7
Posts: 202
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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

utahgal7
Posts: 202
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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

User avatar
beach sunrise
Posts: 1041
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

utahgal7
Posts: 202
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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Thu Jul 27, 2023 9:34 am

Most recent scans were clear. However, Signatera was positive. My oncologist gave me the option of FOLFIRI to potentially delay another tumor. I accepted. So the plan is FOLFIRI for 3 months and then Signatera testing again. If Signatera is positive, then another 3 months of FOLFIRI. Wash, rinse, repeat. You folks know the drill.

The last tumor that my surgeon removed from my lung was necrotic in areas and that led me to do research about several of the non-canonical pathways of cell death (necroptosis, pyroptosis, ferroptosis). Valter Longo, PhD. of USC along with others collaborated on a study https://www.nature.com/articles/s41467-020-16243-3 regarding the synergistic effect of fasting-mimicking diet and vitamin C to initiate ferroptosis against KRAS mutated cancers. The paper indicates the study was done with mice and using oxaliplatin. However, I am planning to use this 3 pronged approach with FOLFIRI (fasting mimicking diet, vitamin C along with chemo).

Who knows if it will work...doesn't hurt to try.
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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: STAGE IV RC GUYS AND GALS

Postby roadrunner » Thu Jul 27, 2023 5:40 pm

Bummer on the Signatera result. I just went through a similar stint on FOLFIRI, and honestly it wasn’t too terrible. Even kept my hair through four cycles, it just thinned and went all white. Don’t know if you’ve done it before, but it’s a bit lighter in overall “yuck” than FOLFOX, and the big downside seems to be diarrhea, which I luckily skipped. I was able to walk through it and run a little on off weeks. Still chemo, of course, so not fun. I wish you strength and positivity!

I did consider trying to fast, but realized it would be hard to comply. Really hard. Don’t think I could have stayed upright. But perhaps this modified diet you’re considering accommodates that. Also, I didn’t do IVC, though I would def consider it if I needed to do FOLFIRI long-term. I’ve seen some good evidence that it helps with tolerance at the very least.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: STAGE IV RC GUYS AND GALS

Postby rp1954 » Thu Jul 27, 2023 6:43 pm

So were you able to get a CEA, CA199, LDH etc recently? Right now, before that first drop of Folfiri touches your veins is a special datum.
I might mention Beach sunrise did use the ADAPT+++/++++ systems, while working, to get herself a lung surgery, and I do think that A++++ has inherent advantage on early LN.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Fri Aug 25, 2023 11:41 am

rp1954,

I apologize for the delay in responding. I was hospitalized for a partial small bowel obstruction after 1st FOLFIRI infusion and also, I had some pressing family issues going on. Again, please accept my apology.

As far as blood work goes:

CEA was 3.2
CA 19-9 was 24


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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: STAGE IV RC GUYS AND GALS

Postby beach sunrise » Sat Aug 26, 2023 12:39 am

Do you have any extra markers on your labs that your monitor?
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Sat Aug 26, 2023 2:15 am

beach sunrise,

I just get the basics (CBC, Metabolic panel, CEA, CA 19-9, CRP, ESR (when I can remember that one). I know that I should get more tests done. A friend of mine had mentioned that a uric acid level test is helpful too, because some CRC patients have high uric acid levels. I thought high uric acid only caused gout. I guess uric acid plays a role in inflammation, too. I am learning new things everyday!

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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: STAGE IV RC GUYS AND GALS

Postby beach sunrise » Sat Aug 26, 2023 10:12 am

Yes, always a learning curve with this.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Wed Oct 25, 2023 12:00 am

Quick update: I have completed 6 cycles of FOLFIRI. Yay! Unfortunately, Signatera is still positive. Signatera went down from 89 to 0.04. Then, CEA dropped from 3.2 to 1.6. So, this is the good news. The bad news is most recent CT scan showed a new lung nodule in RML. Probably will need another VATS on that pesky lung nodule. Also, onc wants to do at least 4 more cycles of FOLFIRI. Not thrilled about that. FOLFIRI has been hard on me, especially during the last 2 cycles.
I had vomiting and bad stomach cramps. I've had to visit the ER multiple times with partial bowel obstruction symptoms. Plus, I have lost quite a bit of hair. Thank goodness, my husband still loves me because I don't look so pretty anymore.

On another note, I hope everyone had a wonderful summer despite everything. In closing, I just want to remind everyone to enjoy every day and try not to worry too much. I know it is easier said than done. Worry is the thief of time and none of us know how much time we have left as part of the cancer club. So, get out and enjoy the most of everyday, if you can! Have fun. Take the trip. Call a friend. Tell your loved ones how important they are to you.

Keep fighting! Researchers are learning more about cancer everyday. I hope all of us can get to and stay NED.

Take care everyone. I am praying and hoping for the best for ALL of us!

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
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

Pagola44
Posts: 340
Joined: Mon Jul 03, 2023 7:57 pm

Re: STAGE IV RC GUYS AND GALS

Postby Pagola44 » Wed Oct 25, 2023 4:12 am

utahgal7 wrote:Quick update: I have completed 6 cycles of FOLFIRI. Yay! Unfortunately, Signatera is still positive. Signatera went down from 89 to 0.04. Then, CEA dropped from 3.2 to 1.6. So, this is the good news. The bad news is most recent CT scan showed a new lung nodule in RML. Probably will need another VATS on that pesky lung nodule. Also, onc wants to do at least 4 more cycles of FOLFIRI. Not thrilled about that. FOLFIRI has been hard on me, especially during the last 2 cycles.
I had vomiting and bad stomach cramps. I've had to visit the ER multiple times with partial bowel obstruction symptoms. Plus, I have lost quite a bit of hair. Thank goodness, my husband still loves me because I don't look so pretty anymore.

On another note, I hope everyone had a wonderful summer despite everything. In closing, I just want to remind everyone to enjoy every day and try not to worry too much. I know it is easier said than done. Worry is the thief of time and none of us know how much time we have left as part of the cancer club. So, get out and enjoy the most of everyday, if you can! Have fun. Take the trip. Call a friend. Tell your loved ones how important they are to you.

Keep fighting! Researchers are learning more about cancer everyday. I hope all of us can get to and stay NED.

Take care everyone. I am praying and hoping for the best for ALL of us!

Paige


Been reading through this thread, thanks for the update! Praying for you :!: :!:
Let's keep fighting
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: STAGE IV RC GUYS AND GALS

Postby roadrunner » Wed Oct 25, 2023 11:38 am

Paige:

Thank you for this post. Your strong attitude and clear-eyed perspective are bracing and helpful for all of us, I believe. I did the FOLFIRI thing last spring, and I can report that while my hair got quite thin, went bone-white, and then got all matted together (had to get a chemo haircut), it has since returned fully (though the white, older hair is frizzy), and nearly all black : )

If I may ask, since I can’t tell from your post, and sorry if I’m forgetting something, but are you getting all that FOLFIRI for just the one pulmonary nodule?
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23


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