Thoughts on treatment approach - stage IV recurrent

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Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Mon Mar 21, 2022 10:24 pm

PS: I should add I’m very open to thoughts on most appropriate complementary/supportive treatments for this situation. I currently take most of the common supplements plus a few off-label meds (metformin, melatonin, dichloroacetate, doxycycline, aspirin, loratadine). I was considering getting some IVC in before the next treatments, and adding hyperthermia during radiation.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby beach sunrise » Tue Mar 22, 2022 1:16 pm

Is niacin one of your supplements?
If not, research it on orthomolecular.org
Melatonin is a great thing. What is your dosage?
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"

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Tue Mar 22, 2022 5:04 pm

beach sunrise wrote:Is niacin one of your supplements?
If not, research it on orthomolecular.org
Melatonin is a great thing. What is your dosage?

Thanks Beach Sunrise, I’ll definitely check out niacin. For melatonin I’m currently on 40mg qhs, my integrative doc has just prescribed me 180 mg daily but I must admit I’m nervous about jumping that high.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby beach sunrise » Tue Mar 22, 2022 5:47 pm

Many "independent" studies on both supplements for CRC.
I am up to 80mg split throughout the day of melatonin. 180mg isn't bad I wouldn't think unless it made you sleep until tomorrow, ha.
It is potent for anti-inflammatory, anti-cancer.
I am not a big person, about 100lbs so Yes, 80mg is probably my upper limit for now. My ND suggested 120 mg. I am working towards it but got to get my body adjusted to 80mg for a lil bit before moving up.
Niacin has been a go to forever until big pharma advertised to phase it out in favor of synthetic rx's. I think you will be impressed by studies and how it helps liver health, detox and kills cancer.
I take niacinamide in the am (precursor to niacin), then up to 1500mg non time release niacin split into doses of 500mg T.I.D. to help my liver and other organ functions.
Time release ingredients are not good for the liver BTW. It fights for time to release what it is carrying while the livers job is to absorb and release what it takes in to get it out into the body where it needs to go. I was advised to stay away from time release things for liver health.
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"

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Tue Mar 22, 2022 8:20 pm

beach sunrise wrote:Many "independent" studies on both supplements for CRC.
I am up to 80mg split throughout the day of melatonin. 180mg isn't bad I wouldn't think unless it made you sleep until tomorrow, ha.
It is potent for anti-inflammatory, anti-cancer.
I am not a big person, about 100lbs so Yes, 80mg is probably my upper limit for now. My ND suggested 120 mg. I am working towards it but got to get my body adjusted to 80mg for a lil bit before moving up.
Niacin has been a go to forever until big pharma advertised to phase it out in favor of synthetic rx's. I think you will be impressed by studies and how it helps liver health, detox and kills cancer.
I take niacinamide in the am (precursor to niacin), then up to 1500mg non time release niacin split into doses of 500mg T.I.D. to help my liver and other organ functions.
Time release ingredients are not good for the liver BTW. It fights for time to release what it is carrying while the livers job is to absorb and release what it takes in to get it out into the body where it needs to go. I was advised to stay away from time release things for liver health.

Fantastic info and detail - thanks again! I’m speaking to my integrative doc again today so will run it past him. I’m about 180 lbs so the melatonin dose does make sense in that context.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby beach sunrise » Tue Mar 22, 2022 9:31 pm

The one thing I found on melatonin is if you are blood thinners, talk to your doc. Melatonin can act as a blood thinner.
I also found out it has radiotherapy protection. Some say take it 2hrs before a scan or radiation therapy.
I take it now 30 minutes before PET/CTs and immediately after.
I'll dig for the studies and post.
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"

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Tue Mar 22, 2022 11:57 pm

beach sunrise wrote:The one thing I found on melatonin is if you are blood thinners, talk to your doc. Melatonin can act as a blood thinner.
I also found out it has radiotherapy protection. Some say take it 2hrs before a scan or radiation therapy.
I take it now 30 minutes before PET/CTs and immediately after.
I'll dig for the studies and post.

Thanks Beach Sunrise, sounds good. Not on any blood thinners these days.

I’m always a bit wary of supplements around imaging, particularly anything metabolic with PET-CT (eg metformin), but I suspect melatonin would be pretty safe. Of course it feels quite ironic to be trying to avoid CT-level radiation when I’m about to line up for 100 greys of SBRT :?
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Thu Mar 24, 2022 1:30 am

beach sunrise wrote:Many "independent" studies on both supplements for CRC.
I am up to 80mg split throughout the day of melatonin. 180mg isn't bad I wouldn't think unless it made you sleep until tomorrow, ha.
It is potent for anti-inflammatory, anti-cancer.
I am not a big person, about 100lbs so Yes, 80mg is probably my upper limit for now. My ND suggested 120 mg. I am working towards it but got to get my body adjusted to 80mg for a lil bit before moving up.
Niacin has been a go to forever until big pharma advertised to phase it out in favor of synthetic rx's. I think you will be impressed by studies and how it helps liver health, detox and kills cancer.
I take niacinamide in the am (precursor to niacin), then up to 1500mg non time release niacin split into doses of 500mg T.I.D. to help my liver and other organ functions.
Time release ingredients are not good for the liver BTW. It fights for time to release what it is carrying while the livers job is to absorb and release what it takes in to get it out into the body where it needs to go. I was advised to stay away from time release things for liver health.

Spoke to my integrative doc today for about 45 mins (that’s gonna hurt my wallet). His recommendations to support the SABR radiation was as below:

- hyperthermia treatment around radiation fractions (one full-body and 2 local treatments)
- Oral colloidal gold, daily during treatment
- Quercetin phytosome (500mg twice daily) as a PARP inhibitor
- Niacinamide (1500mg twice daily)
- Phenylbutyrate (~8 g/day) to lower glutamine levels (continue ongoing)
- Replace the dichloroacetate with 2DG (2-Deoxy-d-glucose) (continue ongoing)

Nothing IV at the moment; reckons I’ll have enough going on with this and the radiation (plus all the usual stuff).

He has also started putting patients on very high dose THC treatments (like 5mg/kg, taken rectally to avoid psychotropic effects) apparently with very good effects, but I’m still considering this one. I don’t have a problem with THC at all, just getting my head around the dose…

Rob
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Thu Mar 31, 2022 8:42 pm

Just a short update for anyone following along… liver SBRT begins on Monday. Rad onc has elected to do 5 fractions rather than 3 as apparently I’m right at the max safe dose for liver radiotherapy to get the 3 lesions covered. Annoyingly that means we won’t be able to target the portacaval node inside the liver that was mildly avid in the November PET, but then again that isn’t the priority right now and may or may not even be an issue still. Next round of imaging after radiation will no doubt tell us more, and if need be I’ll explore an ablation or whatever else is viable.

My rad onc unsurprisingly didn’t support me taking any of the radiosensitisers - didn’t straight out say no but as expected said they’re lacking clinical data and she’s concerned about toxicities. I might start out and if it gets too much, pull it back. In any case I’m not going to take the phenylbutyrate as there’s no way it can be supplied in time anyway, and the others seem reasonably mild.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby beach sunrise » Fri Apr 01, 2022 2:13 am

I hope all goes smooth! Your plan looks really good.
What will the colloidal gold be targeting for benefit? What ppm?
It does help with inflammation, arthritis, joint pain ect. Just curious why he rec'd you take it over colloidal silver for instance.
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"

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Fri Apr 01, 2022 3:33 am

beach sunrise wrote:I hope all goes smooth! Your plan looks really good.
What will the colloidal gold be targeting for benefit? What ppm?
It does help with inflammation, arthritis, joint pain ect. Just curious why he rec'd you take it over colloidal silver for instance.

Thanks! And good question - apparently the gold particles are taken up preferentially by tumour cells, and act as a radiosensitiser / dose amplifier within those cells. He didn’t mention why gold over silver except that it’s very widely studied for safety in humans, and is highly inert/non-reactive. The brand he recommended is around 10ppm and dose is 50ml sipped for sublingual absorption the evening before radiation. It’s cheap too - about $40 for 250 ml.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby beach sunrise » Fri Apr 01, 2022 11:19 am

Thanks for the info on the gold.
I have the silver, 20ppm. Been meaning to study the gold for the differences in the two. Did he tell you to take zinc also with it?
Very interesting. You have an open minded onc that apparently researches outside the SOC box!
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"

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Fri Apr 01, 2022 7:26 pm

beach sunrise wrote:Thanks for the info on the gold.
I have the silver, 20ppm. Been meaning to study the gold for the differences in the two. Did he tell you to take zinc also with it?
Very interesting. You have an open minded onc that apparently researches outside the SOC box!

He didn’t mention zinc - although I do take a modest dose anyway (50mg/d). Is there a suggested interaction between the two?

Unfortunately my onc isn’t that open minded - this all comes from my integrative doctor that I see separately. My onc doesn’t officially support this stuff (as he can’t here under his license), but doesn’t object to me doing things that don’t interfere with treatment. He’s very conservative around combining with chemo, but when I’m NED or doing other things it’s a bit more of a free-for-all.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby beach sunrise » Fri Apr 01, 2022 8:42 pm

I have read silver and zinc compliment each other. I take 50mg of zinc also.
I would think gold and zinc synergize each other. Zinc ia amazing stuff for the body.
You gave me some homework with gold, ha. I may upgrade to gold.
You think you may do IVC?
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"

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Fri Apr 01, 2022 10:17 pm

beach sunrise wrote:I have read silver and zinc compliment each other. I take 50mg of zinc also.
I would think gold and zinc synergize each other. Zinc ia amazing stuff for the body.
You gave me some homework with gold, ha. I may upgrade to gold.
You think you may do IVC?

Sounds great, thanks!

After the radiation they want me to have a break and do some surveillance, before any other systemic treatment. So I might look at doing an IVC or two during that period both for chemotherapeutic properties and also to help with recovery after the surgery and radiation.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5


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