STAGE IV RC GUYS AND GALS

[utahgal7]

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!!!

[roadrunner]

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.

[rp1954]

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.

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.

[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.

...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.

[utahgal7]

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.

[tater]

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.

[utahgal7]

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

[JP66]

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

[Peregrine]

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:

https://coloncancersupport.colonclub.com/search.php?keywords=FOLFIRINOX&terms=all&author=&sc=1&sf=firstpost&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

[utahgal7]

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

[Peregrine]

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 !):

How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

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.:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65900&p=510564#p510539

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]

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.

[JP66]

Paige/Utahgal7,

I was just searching through posts on an ileostomy and came across a post of yours saying that you were having difficulty post reversal as a result of your LAR surgery. What I was wondering was whether your situation improved over time and was there anything you think you did to help?

Thanks!

Joe

EDIT: I just learned the term LARS as a post LAR surgery syndrome and see that it is a heavily discussed problem, but in any case I'd love to hear your thoughts on the topic and whether you have seen any change in your situation over time.

[claudine]

Hey JP66,
My husband is 2 years post rectum surgery, 20 months post ileo reversal. He had terrible LARS the first year; following the surgeon's suggestion, he would take a LOT of fiber gummies - the equivalent of 30mg/day. Turns out it was a really bad idea for him, he completely stopped taking those last Fall and things improved dramatically! If you suffer from LARS, I would highly recommend getting a bidet (we got the Bio Bidet 2000); it makes it possible to do water enemas, which is very helpful, allowing you to "empty" your colon proactively (DH does that every morning). He can lead a totally normal professional life, no more accidents or need to wear adult diapers.
Good luck, LARS is no fun.

[utahgal7]

Hi Joe,

Sorry for my delayed reply. The only thing that really helped was water enemas.

I wanted to give the forum an update. I have been really sick since mid APRIL. I started having right sided weakness and thought maybe I had a stroke. I went to the ER and they performed an MRI and found a brain tumor (left side). Everything then moved so quickly. It’s like sign this form and you need braid surgery now. The pathology of the brain tumor showed its metastatic rectal cancer. The last 5 weeks have been so so hard. I have to learn how to walk, talk, feed myself all over again. I am trying not to wallow in misery because some people have it worse.

Thank you to everyone that reached out to me including beachsunrise and Sara and thank you for listening.

Paige

[roadrunner]

I am sorry to hear this news, Paige. I’m glad that you seem to be on the recovery side of the storm, and hope that your recovery continues well. I wish you good fortune and strength going forward!