4 year cancerversary from stage IV

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beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: 4 year cancerversary from stage IV

Postby beach sunrise » Wed Oct 26, 2022 6:07 pm

We take some things similar just different dosages. I will post my combined protocol of 2 ND's later tonight.
I am still at work and man its been a long day, ha. I need coffee!!!!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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Peregrine
Posts: 131
Joined: Tue Mar 01, 2022 1:18 am

Re: 4 year cancerversary from stage IV

Postby Peregrine » Wed Oct 26, 2022 7:14 pm

beach sunrise wrote:... I need coffee!!!! ...

Coffee??? Is coffee on your list of recommended supplements??? I would be interested in knowing what the various NDs think about it. Or maybe coffee is carcinogenic. Who knows what could be in the realm of possibility . . .

It’s official! Coffee causes cancer (except when it doesn’t)
https://www.theguardian.com/lifeandstyle/shortcuts/2018/mar/30/its-official-coffee-causes-cancer-except-when-it-doesnt

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beach sunrise
Posts: 724
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
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rp1954
Posts: 1621
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 to almost nothing mid 2018, mostly IV C

Rock_Robster
Posts: 720
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
40M Australia
2018 RC, 12cm high
G2 EMVI LVI. 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 then <2. Jun-22: 5. Sep-22: 10. Nov-22: 19
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 yrs
11/21 Liver met, sub-cm lung things
3/22 3 Liver mets & PALNs. Lymphadenectomy
4/22 Liver SBRT
9/22 Small liver spot, PALNs
10/22 PALN SBRT
11/22 Liver mets, possible peri nodules. Xeloda+Avastin


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