4 year cancerversary from stage IV

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beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: 4 year cancerversary from stage IV

Postby beach sunrise » Thu Oct 27, 2022 12:27 am

OH Peregrine, that just burst my bubble and envisioned a coffeeless morning and evening. In the evening the coffee is half cafe and chickory :) Hopefully that is a lil better.

RR, for some reason I can't upload a pdf so will send in DM.
I did notice the niacinamide is advised to go up to 3000mg per day split T.I.D.
Can't figure out how to send pdf thru DM either. Might be blonde moment or not available to do. Idk
DM a gmail or whatever for you and I will send that way.
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

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: 4 year cancerversary from stage IV

Postby rp1954 » Thu Oct 27, 2022 4:53 pm

Rock_Robster wrote:Niacinamide - 2000mg (increasing - meant to be 3000mg)

that is really going high - maybe, maybe not on tolerance. Both niacin and niacinamide have anti-inflammatory properties but are different in benefits, side effects, and pharmacology. They are incompatible with statins, amongst statins' bad habits. Although I bought bulk nacinamide, we've tended to use niacin (nicotinic acid) but responses can be very individual. Pure, instant release niacin is strongly preferred by Abram Hoffer MD over time release forms of niacin including safety.

PSK - 3000mg

I think you mean Coriolus concentrates that have 30- 45% PSK in them, maybe higher but I'm cautious about PSP substitution quoting higher %.
Apparently the Japanese PSK papers may have quoted actual PSK content in many cases. e.g. 3000 x 42% = 1260 mg
In any case, my wife actually had near linear WBC response up to 6000 mg of SuperStrength Coriolus at 42% concentrate (actual batch assay).

Vitamin D - 5000-10000mg

When my wife still had unbiopsied liver lesions (mCRC, primary liver cancer, cysts?) they broke up and mostly dissolved when we went much higher on D3 dose (plus everything else), with the paid advice of Dr. JJ Prendergast, an endocrinologist who had described the dissolution process in various organs at 50,000+iu. There are medical high dose vitamin D3 protocols (ingredients. monitoring) to do this, to avoid mostly calcium toxicity. I speculatively view extreme dose D3 ( 50k-200k) as its best met effect for a limited time, so I classify CRC patients' therapeutic hydroxy vitamin D blood levels as 60-100 ng/ml vs 100-150 ng/ml vs the unstable Great Beyond high dose, in extremis.

Curcumin - 3200mg equiv. of theracurmin.

Some patients with other kinds of cancer go as high as 12-13 grams for specific performance. We used 1-2 pills per day, 650 - 2000 mg but I definitely would willing to go higher, as needed. Often 1 pill is the most important but higher maybe needed for specific performance.

EGCG/Resveratrol - 400-800mg

Bought bulk EGCG cheap but stayed at 400 mg after I found out about its burdens above 750 mg.
Resveratrol, pricey, we mostly used at 300-500 mg but willing to try 750 - 1000 mg. I think resveratrol is specifically important.

Celebrex - 200mg [celecoxib]

is there a problem at 300 - 400 mg of celecoxib? my wife side effects and benefit were very dose dependent while on chemo

Loratadine - 10mg no experience here
Aspirin - 300mg - we mostly used 81-100 mg several years for possible mutations
Beta Glucan - 2000 mg - what brand/quality (% of assayed active isomers but unclear ocurrent brand lab abilities)
Silymarin - 600mg
Quercetin - 1000-3200mg I've been quoted up to 4000 mg in use but maybe more in upper limit.
Andrographis - 2000-4000mg aware of but no experience

Alpha-Lipoic Acid 150-600mg
R- purified form, or R, S- racemic mixture?
900 mg per day R- form is a hard limit
we used R,S-ALA a lot the first year when we had a vitamin milkshake that she tired of

Doc wants me to take phenylbutyrate too which I’m working on but it’s pretty hard to get here.

I have it but we never used really used it, bulky too many items on my wife oral intake - low pill burden, which actually a small part of why she did so much IV vitamin C which is preferable on KRAS forms of CRC, and on 5FU, especially Xeloda for hand foot syndrome.
It was easy to get mail order in US ca 2010. Is TGA (Oz's FDA) too strict for personal mail or walk in with?

DCA - 1000mg
2DG - 1000mg (either this or DCA)....
The 2DG had to come from a lab in the UK. According to his most recent plan I also need to add D-Mannose and hydroxycitrate.

I'm not a DCA fan because of toxicity/body burdens and unsure of performance.
I'm more neutral on 2DG but unsure of performance, no personal experience.
Two friends could not observe specific 2DG performance benefits.

We went the IV (mega)vitamin C route, with megavitamin K2 and B12 (+chemo).

LDN - 3mg
Melatonin - 30-40mg ...
He also wants me to ramp up to 180mg melatonin but I must admit I’m less confident about this one.

I could not observe anything specific with LDN in 1-2 months and it was a hassle for us.
Wife uses melatonin now but refused 10-12 years ago. For me, 21 - 200 mg melatonin is undescribed territory that any repeated discussions or papers would be appreciated.
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

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: 4 year cancerversary from stage IV

Postby Rock_Robster » Thu Oct 27, 2022 7:42 pm

Thanks RP for the detailed response and feedback - hugely appreciated! I’ve summarised my response so far below, but will add more as I can work it out:

Niacinamide - I’ve not noticed any side effects / tolerability issues at 2g, so figured going to 3g (over 3 doses) as the doc suggested was safe. Do let me know if you know of any deleterious effects though.

PSK - active ingredient is Trametes versicolor protoglycan excract 500mg. I’m not sure how to translate that back to the target compound however. Brand is PSK-Trammune (made in Australia using Chinese extract).

Celebrex - no reason not to increase; I think he was being conservative as I also had aspirin in the stack and sometimes take other NSAIDs. I could easily increase the celebrex and reduce the aspirin though, as you suggest. He never gave me specific dosing for the aspirin.

Vit D - I do find the idea of higher doses interesting but am concerned I don’t really have the setup to do regular blood monitoring behind it. Might consider combining with chemo when I’m having more frequent FBEs.

Res/EGCG - yes I err on the lower side usually due to concerns about liver toxicity. Agree it’s a good product but I’ve heard enough horror stories too.

ALA - not much detail on this one I’m afraid, simply states “Alpha-Lipoid Acid 150mg”. I’ll see what I can dig up.

2DG - honestly I’m probably going to stop this soon. I don’t see a lot of effect and it’s overlaps a lot with the metformin, Berberine, DCA, etc. It’s also freakishly expensive to import (about £250/jar) and a pain to take as it’s a powder.

DCA - this was only cycled as I agree about toxicities. I’m not taking at the moment.

LDN is very easy to get and take here, and I took it through my two year NED period as well. Obviously it didn’t prevent recurrence, but I’m somewhat psychologically wedded to it. Just have to watch if I’m also on any opiates for pain (which I’m not currently).

On the higher dose melatonin, I’ll see if I can fish out some papers that my int doc sent my. My biggest concern at this very high doses is beginning to interfere with endogenous production, potentially permanently.

Cheers,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: 4 year cancerversary from stage IV

Postby rp1954 » Fri Aug 04, 2023 1:31 pm

Rock_Robster wrote:Thanks RP for the detailed response and feedback - hugely appreciated! I’ve summarised my response so far below, but will add more as I can work it out:

Niacinamide - I’ve not noticed any side effects / tolerability issues at 2g, so figured going to 3g (over 3 doses) as the doc suggested was safe. Do let me know if you know of any deleterious effects though.

PSK - active ingredient is Trametes versicolor protoglycan excract 500mg. I’m not sure how to translate that back to the target compound however. Brand is PSK-Trammune (made in Australia using Chinese extract).

Celebrex - no reason not to increase; I think he was being conservative as I also had aspirin in the stack and sometimes take other NSAIDs. I could easily increase the celebrex and reduce the aspirin though, as you suggest. He never gave me specific dosing for the aspirin.

Vit D - I do find the idea of higher doses interesting but am concerned I don’t really have the setup to do regular blood monitoring behind it. Might consider combining with chemo when I’m having more frequent FBEs.

Res/EGCG - yes I err on the lower side usually due to concerns about liver toxicity. Agree it’s a good product but I’ve heard enough horror stories too.

ALA - not much detail on this one I’m afraid, simply states “Alpha-Lipoid Acid 150mg”. I’ll see what I can dig up.

2DG - honestly I’m probably going to stop this soon. I don’t see a lot of effect and it’s overlaps a lot with the metformin, Berberine, DCA, etc. It’s also freakishly expensive to import (about £250/jar) and a pain to take as it’s a powder.

DCA - this was only cycled as I agree about toxicities. I’m not taking at the moment.

LDN is very easy to get and take here, and I took it through my two year NED period as well. Obviously it didn’t prevent recurrence, but I’m somewhat psychologically wedded to it. Just have to watch if I’m also on any opiates for pain (which I’m not currently).

On the higher dose melatonin, I’ll see if I can fish out some papers that my int doc sent my. My biggest concern at this very high doses is beginning to interfere with endogenous production, potentially permanently.

Rob, any updates?

I'm reviewing this because of your Aug 2023 RELATIVITY trial question.
simply states “Alpha-Lipoid Acid 150mg” = usually means R,S (racemic)
Vit D - I do find the idea of higher doses interesting but am concerned I don’t really have the setup to do regular blood monitoring behind it. Might consider combining with chemo when I’m having more frequent FBEs. our primary vitamin D "test guard" was calcium level for years with an occasional phosphorous. For part of the first year my wife ran nearer the high limit (UL) on calcium level (her initial batch of 45 mg MK4 was a K2+D3+Ca+Mg bone formula with lots of calcium), she had one 6 mm lung nodule turn to stone, whatever abnormal cells they were. After that she was mid range calcium even on 30,000 - 45,000 iu D3, never a peep on phosphorus. But I've seen another have excess phosphorus level/absorption at even higher D3 loading, with other misc. drug loads with chemo.

We dosed higher on Resveratrol with worry level or lower sales prices, mostly 100-300 mg but never felt the need to go above 500 mg. 750-1000 mg would be an easy trial decision for me under pressure, and 1500-2000 mg a possibility from mere prior mentions someone did it, and after more research for user comment as much as literature.
We eased off EGCG because of potential liver load/toxicity - I am very jealous of liver load and save it for things like celecoxib
Celebrex - are you still doing this (part time?) with Folfiri + Bev? 200 mg didn't really work for my wife and I assume you have more weight / BSA as a guy.
Aspirin - I'm really an 81-100 mg guy for long term use especially to support celecixib too. Even that aspirin dose is supposed wipe out some mutations in a month or so. 300 - 325 mg? I'd rather save it for celecoxib.

IMO, your greatest risk is you never discuss the extra blood labs and I'm a little lost where things are at, biology wise as well as tx status.
Merely shifting from cyclical to continuous 5FU drugs might have a higher temporary response rate than Lonsurf based on comparisons of old 5FU trial data alone. ADAPT ++++ is far beyond that, question is how well it functions after heavy Folfiri+Bev tx. My POV was happy with stasis if backed up by local surgeries for any bad big ones.
cyclical interferes more with supplement performance, especially immune performance, because of damage and inflammation.
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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