STAGE IV RC GUYS AND GALS

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utahgal7
Posts: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Thu Dec 28, 2023 12:02 pm

Rob,

You raise a very important viewpoint regarding chemoresistance. I agree it really is a conundrum. The constant decision making process of weighing the pros and cons of different paths of treatment is just so mentally exhausting. I am worn out!!!
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: 446
Joined: Sun Jan 12, 2020 8:46 pm

Re: STAGE IV RC GUYS AND GALS

Postby roadrunner » Thu Dec 28, 2023 1:14 pm

Rob: Agree, but why run the test if you’re not going to treat? (Assuming monitoring will be the same, anyway.) My only point was that that decision made me question the oncologist’s strategic perspective generally.
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: 1847
Joined: Mon Jun 13, 2011 1:13 am

Re: STAGE IV RC GUYS AND GALS

Postby rp1954 » Thu Dec 28, 2023 1:15 pm

utahgal7 wrote:Right now, I am taking 28,000 IU of vitamin d3 weekly. I take a combination supplement with vitamin d3/k2(MK4). I should probably increase my dosage.

That's only 4000 iu/day (the current, *way* too conservative UL that should have been 10,000 or at least 5,000 iu/day).
What's your 25-hydroxy vitamin D blood level(s) vs dose? My wife, like many CRC patients, would have been clearly deficient at that intake level since she was borderline insufficient after months of 11,000-17,000 iu D3 intake per day. Old Joe was less interested in MK4 and was apparently satisfied to stabilize his cancer and diabetes-cardio patients on 50k (to 100k en extremis) megadose D3 with ~5mg/day of MK4 whereas Japanese medicine had already identified 45 mg MK4/day as a target for osteoporosis and some liver cancer patients. Since my wife had liver things and was potentially subject to chemo driven bone loss, the choice seemed clear. Especially after I had blood and lab tissue data that suggested her cancer tissues were ones that responded to MK4 too.
utahgal7 wrote:I feel like there a 2 groups of oncologists. One group is willing to be proactive with a positive Signatera result by initiating chemotherapy. Then, you have the other group who is unwilling to treat based solely on Signatera results but wants confirmation with positive CT scans.

Yep. Std cancer medicine has long treated based on the scans, not a single blood test or even a panel series. In fact, xray series based dose response was mostly all that was possible before CEA, CA199 markers were broadly available. In the early 1970s, ESR, this old inflammation marker was the most common CRC blood "marker" in use for case management, although CEA and CA199 had been recently discovered. However, cancer patients often have 6 - 9 months early warning with blood data, over scans. How to best use that time is a big deal.

However, it appears that some patients may benefit from maintenance like chemo or more aggressive forms, especially if they solve other problems that stymie patient success if left unaddressed (like std). For patients that have well conditioned blood samples and well correlatable blood markers, like my wife, multiple blood panels were faaaar more useful for day to day and month to month cancer/chemo decisions. IMO, there is substantial risk of missed opportunity(s) if you could get a rational multi modal plan with maintenance based strategies, advanced beyond std.

Rock_Robster wrote:[I think the challenge however is that even the most proactive oncologists should be practicing evidence-based medicine, and there is as-yet no body of evidence demonstrating that restarting chemotherapy in the context of stage IV disease and positive Signatera test alone results in a better overall outcome for the patient (PFS/OS). While it could conceivably delay or even prevent a recurrence,

Several concepts of personalization applied correctly can produce results quicker than std EBM approaches that actually have some scientifically unsound practices as well as wasteful habits. Erbitux and PD1 inhibitors could be counted as victorious examples of single variable personalization to cope with EBM requirements that otherwise would have flunked them out.

Also we did not have the chemo damage that is normal for std Maximum Tolerated Dose (MTD to grade ~3), scan response chemo treatment. We could leverage treatment over longer times with less chemo damage and fewer missed treatment opportunities.

Rock_Robster wrote:...it’s equally possible that it only promotes early chemoresistance and results in an overall weakened patient with fewer treatment options available once a recurrence is radiologically proven. Such a conundrum at the moment.

Since the chemo activity of cyclical 5FU alone without -iri or -oxi was typically 3-6-9 months until chemoresistance, this was an issue challenged us in the first year, for several years. Since we had early success with LEF and other alternative adjuncts, including high potency nutrients (before surgery #1), it was not too difficult to merge with Japanese oral chemo (UFT and 5FU itself) literature, which had a much longer experience base than xeloda in 2010. (by ~2020, Xeloda had enough data to do what my wife did with UFT)

One important aspect of chemoresistance/chemosensitivity isn't whether the 3rd huge met ( 22 mm) on a highly metastatic cancerous lymph node chain, is chemoresistant but whether the chemo could destroy or induce somnolence in cancer stem cells, cancer cell clusters floating around, or peripheral, tendril like extensions looking to spread the cancer. Also a less toxic chemo combined with high potency anti-cancer nutrients can often mean a stronger patient; immunochemo may deliver degree of a self vaccinating cancer phenomenon. This then aggressively combined with surgery seemed to be the crucial step to my wife exiting metastatic cancer that I typically had surgeons and drs instantly giving up on my wife.

Following various literature and examples, we found we could delay chemoresistance and restart chemosensitivity to 5FU multiple times according to well conditioned blood samples.

Salvage surgery with a locally curative cleanout is part of how we busted chemoresistance. Ditto continuous (immuno)chemo on (micro)mets at the nearest point in time after surgery possible, and hereuristic changes to adjuvant formulations to accumulate better and better blood markers.
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: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Thu Dec 28, 2023 3:03 pm

rp1954,

Last time I had my vitamin D levels checked was this past Sept. and it was 48. So, I had been taking 4000mg of vitamin d3/k2 daily throughout the summer. Plus, I had spent a lot of time in the sun. Usually in the winter I take a higher dosage of vitamin d3. Last winter, I took 6000 mg a day. I need to have my levels checked again and increase the dosage accordingly.
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

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: STAGE IV RC GUYS AND GALS

Postby tater » Wed Jan 17, 2024 6:30 pm

I find this discussion interesting. I haven't been on this site for awhile now. My dw had vats surgery 18 months ago and yes it was painful for her. 3 nights in the ICU. She's still very tender in the area.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

utahgal7
Posts: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Thu Jan 18, 2024 8:14 am

tater,

Sorry to hear about your family member. She should definitely talk to her doctor about the lingering pain. Although the following article is old (1994) and surgical techniques may have changed, I found the following article interesting https://www.jtcvs.org/article/S0022-5223(94)70384-1/pdf. It describes some of the surgical trauma that can take place during VATS surgery. I have a CC friend who has undergone 2 VATS and a lung lobectomy. She has chronic nerve pain from those surgeries and unfortunately, gabapentin has not been helpful. If your local doctor is unable or unwilling to help, I would consider consulting a pain management specialist.

Best of luck and I hope she can find relief from her pain.

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

JP66
Posts: 21
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: STAGE IV RC GUYS AND GALS

Postby JP66 » Sun Jan 21, 2024 8:54 am

Hi Paige,

My name is Joe. On October 17th last year I learned I had a tumor and in November it was found to be Stage IV but oligo (don't know the proper full spelling) having reached 2 left side Common Iliac lymph nodes. Fortunately my team of doctors are treating me with curative intent instead of giving up on my case and going for pure palliative care. I have finished my first round of treatment that included 27 radiation treatments plus Xeloda and I'm preparing to start FOLFIRINOX on January 29th. I realize I have a long road in front of me with long odds, but hearing or reading stories like yours makes all the difference.

Anyways, enough about me.

I just wanted to post here to say thank you for sharing your thoughts and story. I have learned a ton in a very short time period and seeing you or reading your story 3 years post diagnosis gives me even better hope than I had before so thanks!

This is the first thread on here that I am reading and I look forward to reading many many more threads and learning even more.

Joe in NY
- Male 57 y/o
- TIIIbN+M1
- Stage IV (diagnosed 10/23)
- MSI status - ?
- KRAS non-mutant
- surgery - TME planned post chemo
- Modified Neo-adjuvant Therapy (I'm not sure why they call it "modified" although my guess is the chemo is FOLFIRINOX and not FOLFOX)
- tumor 3.9 cm craniocaudal length, 7.4 cm from AV, moderately differentiated
- 01/24 completed 27 treatments radiation+Xeloda
- CEA 8,10,11/23 1.8,1.3,1.6
- dihydroxi vit D 70.9 pg/ml

User avatar
Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: STAGE IV RC GUYS AND GALS

Postby Peregrine » Sun Jan 21, 2024 2:32 pm

JP66 wrote:
My name is Joe.
...
This is the first thread on here that I am reading and I look forward to reading many many more threads and learning even more.

Joe in NY

Hi Joe, and welcome to the Forum!

If you want to read some more Stage IV threads, here are a few:

NED roll call
Stage IV: NED for how long? (2021 roll call)
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65587&p=509066#p509066

And here are some threads on FOLFIRINOX:


utahgal7
Posts: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Sun Jan 21, 2024 2:47 pm

Hi Joe,

Welcome to Colon Club. You have come to the right place. I am sorry to hear your cancer has spread to iliac lymph nodes. Perhaps someone on here that has experienced similar metastasis can post and share their experiences with that. Also, I don't have any experience with FOLFIRINOX. Again, maybe someone with that experience can post about it here or send a pm to you.

I see that you live in Westchester County. I have relatives that used to live in Pelham. I miss the NY bagels, NY coffee and the cannolis from Ferraras.

Best of luck to you, Joe. Feel free to send a pm to me if you have any questions or if I can provide any advice.

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
Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: STAGE IV RC GUYS AND GALS

Postby Peregrine » Mon Jan 22, 2024 2:08 am

utahgal7 wrote:Hi Joe,

Welcome to Colon Club. You have come to the right place...

I agree with Paige. This is the right place for you at this point in time. This support forum provides both informational support and emotional support.

Just hang in there and eventually you should be able to get the help you need. (You can't send PMs right now until you have been promoted from Newly Registered User to a higher level (e.g., to Registered User) and that requires you to post from 5 to 10 more posts to the main board before they will promote you.)

It would help, though, if you could update your signature a bit right now so that people here can see at a glance just what your overall situation is, in terms of diagnosis, treatment, and follow-up actions already taken or planned for the future.

More detailed information on signature preparation is contained in this post (Very important !):


Among other important things, what's missing or unclear in your signature right now is:

- age, sex .e.g., M ??yrs
- TNM stage, e.g. T4bN1M1 or whatever your scan report estimated
- Stage: e.g., Stage IV-a or whatever
- MSI status - MSI-high; or MSI-low, i.e. MSS (stable), based on analysis of initial tumor biopsy
- KRAS status: KRAS wild-type? i.e., non-mutant?
- Type of surgery planned: no surgeries so far?
- Type of neo-adjuvant therapy: Is it TNT (Total Neo-adjuvant Therapy), i.e.:
Whatever information you can provide right now will be useful in the long term.
.
Also, it would be good if you could read through the posts in the following thread, especially the "Day-1, Week-1" post by rp1954:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=66310

rp1954
Posts: 1847
Joined: Mon Jun 13, 2011 1:13 am

Re: STAGE IV RC GUYS AND GALS

Postby rp1954 » Mon Jan 22, 2024 12:07 pm

JP66 wrote: is Joe. On October 17th last year I learned I had a tumor and in November it was found to be Stage IV but oligo (don't know the proper full spelling) having reached 2 left side Common Iliac lymph nodes. Fortunately my team of doctors are treating me with curative intent instead of giving up on my case and going for pure palliative care. I have finished my first round of treatment that included 27 radiation treatments plus Xeloda and I'm preparing to start FOLFIRINOX on January 29th. I realize I have a long road in front of me with long odds, but hearing or reading stories like yours makes all the difference.

We have special experience with para-aortic mets, perhaps 1-2 steps beyond oligiometastatic but still overcame them anyway.
Congratulations on not being boxed by the first oncologist, you have to think and advocate for yourself.
Now what the second guy appears to be trying to do is abalate ("evaporate") the lymph nodes or perhaps some of the smaller ones outside the surgical zone for potentially a curative surgery.
One suggestion is that you copy/describe the CT scan here in detail sizes/location(s)/separations.
My second suggestion, that you get some improved blood work to answer biology and comparisons before that first treatment, with a simple 800 phone call to blood lab.
There is a lot of heirloom data there if you can motivate yourself enough to do the better blood test. Better bloodwork helped my wife navigate off fatal rocks in comfort, and saved us a lot of money too.
It is a short time fuse - so if money is not tight, cash with no questions is the fast way to get it done - too many patient miss it and a part of their future.
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


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