STAGE IV RC GUYS AND GALS

[utahgal7]

rp1954:

These were the recommended herbs and dosages:

Meriva - 2000 mg daily split between 2 doses
Resveratrol - 250 mg daily
Ginger - 1000 mg daily split between 2 doses
Astragalus - 2000 mg daily split between 2 doses
Quercetin - 150 mg daily
Berberine - 1500 mg daily split between 3 doses
Baicalin - 1000 mg daily split between 2 doses
IP6/Inositol - 1600 mg daily split between 2 doses
Melatonin - 20 mg nightly
Mushroom Supplement - Stamets 7

I was told the following: Quercetin, curcumin, melatonin, and resveratrol could possibly either inhibit p53 mutation and/or initiate apoptosis via p53 stimulation. Ginger, curcumin, berberine and IP6 could down regulate cell cycling. Berberine, curcumin, baicalin, ginger, melatonin, quercetin, ip6 and mushrooms could trigger apoptosis. Berberine, curcumin, resveratrol can down regulate TGF-B. Curcumin and baicalin could possibly inhibit VEGF. Resveratrol, melatonin, curcumin and ginger could possibly inhibit NF-KB. Quercetin could possibly inhibit KRAS.

This is just a brief synopsis of what I was told.

When I took Xeloda earlier this year. I only took it for 3 months. My CEA bounced around just a bit on it and it only lowered my positive Signatera by about 30 points. However, I only did IV vitamin C 3 times because that was all I could afford at the time. I relied on liposomal vitamin C and that was probably a mistake on my part.

I can elaborate further later today. I have a number of errands to run and I will respond later this evening.

Thank you again rp for your valuable insight. I agree that the ADAPT protocol is probably the better option. But for now (as long as I can manage on FOLFIRI), I will continue on. My CEA has dropped from 3.2 to 1.6 and Signatera dropped from 89 to 0.04. Both are positive signs. However, it may just be temporary.

Take care,

Paige

[utahgal7]

rp1954,

I forgot to mention one other thing. I was told that Astragalus could help maintain healthy WBC during chemo.

[rp1954]

Meriva - 2000 mg daily split between 2 doses
Resveratrol - 250 mg daily
Ginger - 1000 mg daily split between 2 doses
Astragalus - 2000 mg daily split between 2 doses
Quercetin - 150 mg daily
Mushroom Supplement - Stamets 7

It looks like a good start but our list was necessarily longer to maintain maximum chemo sensitivity and body performance with continuous chemo.
My personal opinion is that continuous chemo to minimize inflammation and chemo damage is the best environment for supplement performance but the multimodal aspect (chemo + IVC + supplements+ aggressive use of surgeries) is important. IV vitamin C makes surgery better too.

Ours:
Ginger, cooked with the actual root.
On quercetin we often used 650- 800 mg caps, and I would have considered more if necessary.
Resveratrol - 300-500 mg daily, would have considered more if necessary.
PSK and a separate triple Reishi/Shiitake/Maitake mushroom formula were of our usual mix.

Melatonin - 20 mg nightly
Berberine - 1500 mg daily split between 3 doses
Baicalin - 1000 mg daily split between 2 doses
IP6/Inositol - 1600 mg daily split between 2 doses

My wife did not do these, so little experience base

When I took Xeloda earlier this year. I only took it for 3 months. My CEA bounced around just a bit on it and it only lowered my positive Signatera by about 30 points. However, I only did IV vitamin C 3 times because that was all I could afford at the time. I relied on liposomal vitamin C and that was probably a mistake on my part.
.... I agree that the ADAPT protocol is probably the better option.

I think IVC is necessary to make xeloda doable at highest, most aggressive continuous dosage.
IV vitamin C cost is a matter of local logistics and cost control. Where we live, one could easily pay 10x more than we do. At home usually has the best potential for lowest cost despite any initial objections otherwise.

[utahgal7]

rp1954,

Thank you again for all of the helpful advice. I have to do 4 more cycles of FOLFIRI, for a total of 12 cycles. After the 12th cycle, my onc mentioned that I may want to consider maintenance chemo with XELODA, especially if Signatera comes back positive again. I will have to make sure that I get IV vitamin C more often with XELODA.

Thank you again for your insight and recommendations!

Paige

[utahgal7]

So, I completed 10 rounds of FOLFIRI. Chest CT was clear. Signatera was positive again. So, that's no bueno. My oncologist doesn't seem to think that more chemo right now will benefit me. So it's watch and wait for the cancer to come back. Oncologist seems to think that I will have regrowth of cancerous lung nodule(s) by summer 2024. Then, he said we could try FOLFIRI or FOLFOX again. Also, I was given an option of Lonsurf/Avastin combo. There's time to make decisions on all of that later. I just want to enjoy New Year's. Hope everyone had a wonderful Christmas!

Happy New Year everyone!

[Rock_Robster]

So, I completed 10 rounds of FOLFIRI. Chest CT was clear. Signatera was positive again. So, that's no bueno. My oncologist doesn't seem to think that more chemo right now will benefit me. So it's watch and wait for the cancer to come back. Oncologist seems to think that I will have regrowth of cancerous lung nodule(s) by summer 2024. Then, he said we could try FOLFIRI or FOLFOX again. Also, I was given an option of Lonsurf/Avastin combo. There's time to make decisions on all of that later. I just want to enjoy New Year's. Hope everyone had a wonderful Christmas!

Happy New Year everyone!

Sorry to hear about the Signatera result. For what it’s worth, the advice you’ve received is very similar to what I did - that there is little evidence supporting a benefit from doing more heavy chemo now, and the risk of recurrence remains likely. However I’m not sure about the timeline - after my NED it was 2 full years without chemo before I had a confirmed recurrence, which I was very grateful for. And of course there may well be other things you can do in the interval to reduce or delay that risk further.

I would also research fruquintinib as a potential line before Lonsurf/Avastin, along with a couple of the more promising trials (given Lonsurf is often a control drug for phase 3 trials, so prior use can be an exclusion criteria).

Best of luck as always

[utahgal7]

Thanks, Rob, for the kind words of encouragement. I appreciate it. Yes, I hope my oncologist is wrong about the timeframe to recurrence. I am going to continue with my current stack of supplements with the hope to delay progression for as long as possible.

Have a great New Year!

Paige

[utahgal7]

Rob,

I forgot to mention thank you for the advice about Lonsurf/Avastin. That is very helpful to know. I will definitely ask about fruquintinib.

Paige

[rp1954]

No, I actually started FOLFIRI based on positive Signatera test from July of this year. CT scan in July was clear of any new lung nodules. New lung nodule didn't show up on CT until this month . My onc wanted to be proactive because as you know, positive Signatera means an eventual recurrence. So I started FOLFIRI at the beginning of August. My onc thinks its odd that I have a new lung nodule while on FOLFIRI. But new nodule is not big enough for biopsy yet. Who knows, it might not even be cancer. I am going to try not to sweat it because the holidays are coming and I want to enjoy the time with my family.

Std US medicine tends to be slow on surgical lung biopsies, without Rolles' laser techniques that have more target flexibility and lower good tissue losses.
And perhaps Coswig's more iffy CT scan - small biopsy honed eyes.
Historically, std medicine too often misses surgery's window of opportunity for lung mets. Especially without more continuous (immuno)chemo door to door to the Operating Room, for spread containment, and only based on scans (vs better blood work too). For the newer readers, our version of immuno-chemo is through high potency immune boosting supplements rather than synthetic antibodies like Avastin or Erbitux. Too many times, patients don't get high potency, personalized supplements that have measurable effects.

I was hospitalized for a partial small bowel obstruction after 1st FOLFIRI infusion [August 2022]...CEA was 3.2 CA 19-9 was 24

As it turned out in retrospect, my mCC wife was still highly metastatic at about 15% higher marker values than your 3.2+24, a month after 1st surgery (2010). And despite "looking low", it can be an unfriendly biology pair statistically (interferences/inflammations?).

We always were able to contain her mets' circulating spread (lymph/blood) with continuous dosing, even when too low to restrain growth of existing mets. Her real risk was growing and blowing out the wall of three enlarged cancerous lymph nodes that had hyperinflated from 1mm - 6 mm to ~20mm in less than 2-3 weeks. We seem to have slowed or stopped hyperinflation and girth growth by improved chemo dosage, before 2nd surgery, after slowly improving back from the 5FU-folic acid toxicity, a slow motion crash earlier. Her surgeon said that her chemo sensitivity would probably improve after surgery, getting all the big mets out, and that was our measured experience.

After the 2nd surgery with a large cluster removed, our surgeon was dispairing because he figured she was shot through (micro)mets, and she had extensions (small tendrils thru the wall).
Which I think we witnessed as old ones popped, and died over several years.
We had varying degrees of CEA/LDH/CA199 success depending on oral chemo doses and formula, with cumulative improvements. What we couldn't or wouldn't do in 2010 was improved in 2011 and 2013.

In my eyes, your drs missed the boat in Jan/Feb after the VATS, whether an ADAPT+++, Folfiri, NCCN or not. The Question is "what recovery, data and probabilities would they have found credible to restart chemo," not necessarily on NCCN guidelines. Most won't without a struggle.

Second surgery, we restarted UFT (oral 5FU chemo) first at 24 hrs and ~10 hours with IV vitamin C post PALN surgery with no surgical problems and good recovery, with a previously well fortified patient. We knew that we dealt with less tissue problems and better wound healing than ordinary chemo patients. My interpretation is that her cancerous stem cells and/or smaller micromets weren't fully dislodged by our immunochemo 2010/2011 formulations, but they were silenced by it and were eventually outrun by 7 years of improved versions. If any hiccups happend, bad things started to show up on her blood tests, soon observable when very fine tuned, much different than what's (not) observable with Folfxxx cycles.

[utahgal7]

rp1954,

In retrospect, I should have gotten FOLFIRI sooner. After my VATS, I was only given the option of XELODA. I should have advocated for FOLFIRI then, so that is my mistake. Live and learn, I guess.

[rp1954]

In retrospect, I should have gotten FOLFIRI sooner. After my VATS, I was only given the option of XELODA. I should have advocated for FOLFIRI then, so that is my mistake. Live and learn, I guess.

In the US, we would take the xeloda scrip and morph it into Adapt+++.
The real question now, is whether some level of Adapt +++/++++ can still improve your situation on any of several points post Folfiri. e.g. contain spread, slow size growth, eliminate the biopsy gap (window closing risk), improve blood testing, with better quality of life during the biopsy wait. Also the blood and dosing information gained are potentially useful post op, like for us.
When I had burning questions, we could take blood series at 7 - 14 day intervals, vs 21 - 31 days. In 1-3 months, you might have clear answers, instead of flying blind. Regular chemo can't do either the frequency or readable results sensitivity.

An important aspect of continuous Adapt+++ etc, is that even if it doesn't kill the mets, you may be able to watch CEA, blood and scan, stretched out in slower, clearer motions with better chemo (less QoL impact, maybe higher success rate), to pull the trigger on a successful surgery at the earliest ripe moment without as much monitoring overshot risk (surgical window closed while drs dwadle)

I am going to continue with my current stack of supplements with the hope to delay progression for as long as possible.

What's your vitamin D3 plan?
Old Joe (UCSF trained endo Dr JJ Prendergast) had his cancer experiences with 50,000-100,000 iu/day + K2 and magnesium, with a minimum of 4 months for results.

With near max chemo, we were a little more cautious, building up and operating under 50,000 iu (27,000-44,000 iu) but higher (Japanese cancer dose) levels of MK4 (K2) than his usual. But you know, whatever was in her liver started shrinking, breaking up and dissolving on scans at 4 months and later ... Impressed the hell out of my radiologist.

[utahgal7]

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.

[roadrunner]

Utahgal7:

For what it’s worth, and while I’m a big proponent of perioperative chemo in the Stage 4 context (did it big time with my recent lobectomy), its value is not fully confirmed, and it is definitely not viewed as curative by most, even in the oligometastatic context (w/surgery). So I wouldn’t beat myself up too much about any theoretical missed opportunity around your metasectomy. If you’d done FOLFIRI then, it may have delayed things, but that time might just have been regained anyway when you just did the 10 cycles. Remember that any mets that are “coming along” and giving the positive result were likely there for *years* and pretty well established when you had your metasectomy.

I do, however, understand your (apparent) dissatisfaction with the fact that you were only “offered” Xeloda at that time. While I doubt that was material in your case for the reasons above, I favor wide open discussion and consideration of as many options and strategies as possible, *especially* in the Stage 4 context. Further, I’d question an oncologist who would run a ctDNA test and then do nothing when he/she got a positive result, opting instead to wait for something to show.

I agree with Rob that you might well have an extended break (I wonder if you asked why the oncologist feels that such a specific prediction (pulmonary recurrence by summer) is responsible to convey at this point), and keep in mind that Signatera is highly specific (I think around 95% or so) but not infallible (there are false positives, though interestingly, at least some are attributed to chemo or other therapeutic interventions while others may reflect immune system resolution of minimal residual disease). But it is to be hoped that any recurrence will still be oligometastatic disease, and I’d want to be in an optimal position to address that. Now might be a time to consider getting a second opinion for that reason. The above suggests that your oconologist is being somewhat reactive/short-sighted, or at least hasn’t explained strategic decisions in an optimal manner. Again, I don’t see material harm in any of that yet, but for the next round—if there is one—you need someone who’s strategic, open-minded, communicative, and sensible. Is all that true of your present oncologist? Maybe, but just thought I’d ask here in case you weren’t looking at it that way.

Bottom line: I’d say you likely didn’t hurt yourself here, but maybe it’s worth appraising you onc for the next battle, if it comes?

[Edited to add: rp1954’s posts above quote your older 2023 posts referring to a “new nodule.” But you say your most recent scan was clear. Did the nodule disappear? Did the radiologist compare to the previous scan to determine its status? (That should be on the report, and it’s not always done.) Or am I missing or misunderstanding something?]

[utahgal7]

roadrunner:

Yes, it is hard to not to think about what I could have or should have done earlier in terms of treatment.

IMO, 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. So when my Signatera was positive this past summer (clear CT in July), I had a different oncologist who fell in the latter camp. His words to me were "We don't treat based solely on Signatera results." So, I found another oncologist who was willing to be proactive based on Signatera and not wait for a tumor to show up on CT.

As far as my oncologist's opinion that he feels like cancerous lung nodules will recur by summer, I think he may have come to that conclusion based on the mutations from the lung nodule that was removed by VATS in Jan 2023. I will have to ask him for further clarification on his opinion.

Yes, I did have a new lung nodule (RML) that appeared on CT scan in Oct 2023 but then disappeared on Dec. 2023 CT.

[Rock_Robster]

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.

I agree with the distinction. 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, 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.