4 year cancerversary from stage IV

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Rock_Robster
Posts: 720
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

4 year cancerversary from stage IV

Postby Rock_Robster » Fri Oct 21, 2022 10:00 pm

Hey all, just in the spirit of positive messages for folk earlier in their treatment, I’m about to celebrate my 4 year anniversary from a stage IV diagnosis (MSS, NRAS+). I was NED for 2 of those years with no treatment, and although I’m not quite NED now (couple of small lung things and a small pesky liver met) my disease burden is very low (no pain, high QoL, working full time). I know I’m very “lucky” to have had the success with treatment that I’ve had, and wish at least as much success - and more - to everyone out there!

I’m aware I may likely never be “cured”, but being able to maintain my quality of life and treat this as a chronic illness has made an enormous difference to my life (particularly after the initial intensive treatment period).

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

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: 4 year cancerversary from stage IV

Postby prayingforccr » Sat Oct 22, 2022 2:10 am

Rock on, rockrobster.

Sounds like you’re in late whack a mole stage.

Don’t give up on the dream on NED!

Are you doing any maintenance protocol until you can get those mets zapped/removed?
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

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 » Sat Oct 22, 2022 2:31 am

prayingforccr wrote:Are you doing any maintenance protocol until you can get those mets zapped/removed?


Thanks! I’ve been really holding off on SoC systemic therapy as I know once that’s done it’s done, and a RAS+ I don’t have a lot of lines available, so I’ve mainly been doing locoregional treatments (particularly surgery and ablations). Fortunately my disease biology seems to be fairly indolent so far without systemic therapy. However the time has probably come to do something so will probably start soon just on capecitabine + bevacizumab (haven’t has either before really). The rad onc is also offering SABR on the liver lesion if it has progressed.

One issue I do have is that I don’t qualify for most trials yet having not progressed on oxaliplatin or irinotecan, so if the maintenance protocol can’t maintain stable then I’ll likely add the Iri in so I can at least start to get some trial drugs when it stops working!
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

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: 4 year cancerversary from stage IV

Postby prayingforccr » Sat Oct 22, 2022 7:14 am

Not doing any “alternative” supplements/treatments?
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

DarknessEmbraced
Posts: 3727
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 4 year cancerversary from stage IV

Postby DarknessEmbraced » Sat Oct 22, 2022 8:22 am

That's wonderful! I'm glad you're doing well. :)
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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 » Sat Oct 22, 2022 9:14 am

prayingforccr wrote:Not doing any “alternative” supplements/treatments?


Yes a fair bit - off-label meds are basically aspirin, celebrex, metformin, melatonin, 2-DG, LDN, doxycycline (cycle) and dichloroacetate (cycle). I have statins but felt awful on them so have stopped.

Main supplements are vit D, curcumin, EGCG/resveratrol, PSK, silymarin, niacinamide, quercetin, andrographis, and a few other things added not so routinely (ALA, zinc, Berberine, beta glucan, bromelain, cinnamon, liquorice root, creatine).

I plan to do some IVC/D before next treatment and likely a full-body hyperthermia session post-radiation. My integrative doc wants me to do a niacin and IR sauna flush protocol shortly too, so that should be interesting.
Last edited by Rock_Robster on Sat Oct 22, 2022 7:53 pm, edited 1 time in total.
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

stu
Posts: 1590
Joined: Sat Aug 17, 2013 5:46 pm

Re: 4 year cancerversary from stage IV

Postby stu » Sat Oct 22, 2022 12:24 pm

Fantastic post .

You have done incredibly well .

Hope for more success and quality living for you .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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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 » Sun Oct 23, 2022 12:36 am

RR, great alt add ons. I would like to add that niacin is a good choice here. Niacinamide helps jumps start NAD then niacin after that during the day. I would not recommend any time release anything. Time release stresses the liver.
Years ago niacin was part of cancer treatment then it faded out. I take niacinamide in the morning then niacin 3 times a day.
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: 720
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: 4 year cancerversary from stage IV

Postby Rock_Robster » Sun Oct 23, 2022 2:14 am

Thanks Beach Sunrise, really appreciate the insights! Indeed nothing here is time release, and I started the Niacinamide relatively recently so keen to see how that goes.

Have you ever had any experience with a Niacin dose escalation and IR sauna protocol? There seems to be some research around in using it for treating cumulative toxin exposures, such as heavy metals in industrial or military contexts. There was also a small trial done in 9/11 first responders with some interesting results
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

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

Re: 4 year cancerversary from stage IV

Postby beach sunrise » Sun Oct 23, 2022 4:02 pm

No esperence with IR sauna just the niacinamide and niacin. But definitely can see the sauna and niacin working together. Sweating brings toxins tot he surface, so ya makes sense.
I take 1000mg niacinamide first thing in the morning. Had to titrate up on niacin from 250mg T.I.D to 500mg T.I.D. to get use to the flushing effect. I no longer flush. It wasn't bad at all just heat rising to the top of my head for a minute.
Niacin has been used for years for detox and heart 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: 720
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: 4 year cancerversary from stage IV

Postby Rock_Robster » Sun Oct 23, 2022 9:12 pm

Thanks Beach Sunrise, appreciate the insights and great to know you’ve tolerated the niacin well.

Indeed the concept seems to be similar - dose-escalate niacin (up to 2500mg max) until you achieve a flushing effect each time, then do 30 mins of exercise followed by a 30-60 min IR sauna session. Idea is to combine the flushing effect of the niacin with significant sweating. You also combine with a few other supplements (vit B6, lipo vit C, fulvic acid, charcoal binders, omega 3), and then obviously rehydrate with a lot of electrolytes. Should be fun…
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

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

Re: 4 year cancerversary from stage IV

Postby beach sunrise » Mon Oct 24, 2022 11:19 am

You have found a good int onc!
Why the lipo C I wonder?
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 » Tue Oct 25, 2022 3:45 pm

Rock_Robster wrote:I’ve been really holding off on SoC systemic therapy as I know once that’s done it’s done,

...or you might be able to do ADAPT+++ (flexible continuous systemic, indefinite option) depending on your circumstances
Not sure of people's ability to adequately "navigate" oral chemo in Oz's health system, vs medical tourism in Asia for support and supplies.

...a RAS+ I don’t have a lot of lines available,

to me, that statement depends on whether you can make chemo work again in ADAPT+++ after heavy chemo

so I’ve mainly been doing locoregional treatments (particularly surgery and ablations). Fortunately my disease biology seems to be fairly indolent so far without systemic therapy.

AFAIK, you haven't shown any baseline blood data sets to consider biology here

The rad onc is also offering SABR on the liver lesion if it has progressed.

I'm big on immunochemical or surgery

One issue I do have is that I don’t qualify for most trials yet having not progressed on oxaliplatin or irinotecan, so if the maintenance protocol can’t maintain stable then I’ll likely add the Iri in so I can at least start to get some trial drugs when it stops working!

I'm not sure how far you've really explored the orthomolecular limits for inhibition on stack and dose
the active amounts and combinations are often surprising, or not low dose

off-label meds are basically aspirin, celebrex, metformin, melatonin, 2-DG, LDN, doxycycline (cycle) and dichloroacetate (cycle)...
Main supplements are vit D, curcumin, EGCG/resveratrol, PSK, silymarin, niacinamide, quercetin, andrographis,
and a few other things added not so routinely (ALA, zinc, Berberine, beta glucan, bromelain, cinnamon, liquorice root, creatine).

that certainly is a start on a stack with some potential MIAs, but what actual dosages have you tried?
the working dose is often alternative drs' Achilles heel

I plan to do some IVC/D before next treatment

continuity (1.5-2x/week) and dose in IVC may be essential with KRAS, possibly other supplements for IVC
for us, I considered IVC+K2 a better replacement for 2DG and DCA on a speculative basis about 2DG and DCA, where I did have lab data on 5FU+C+K2 for living cancer cell clusters

likely a full-body hyperthermia session post-radiation.

The only discussion of rigorous study I've seen (with ovarian cancer pre-2000), indicated that full-body hypothermia was a substantial series of stiff treatments (12?), "one shot with no restart" and "harder", more aggressive cell lines if you did not get it all. I may be a little limited on literature range and out of date.
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

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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 1:20 pm

To add to Rp, dose is important. Most is way higher than FDA or whoever says safe. Fact is our bodies only absorb around 30% of most supplements before it is flushed out.
With ADAPT+++ I got a curve ball recently. Because I keep cancer undetectable with scans and bloodwork except for CEA, docs are wondering if I still have cancer rolling around. I had to try to explain how I keep it beat down thru ADAPT+++ and how I use 3 different avenues of advice and opinions (2 ND's that have different niches, surgeon and onc).
In my mind, goal was to keep on beating it to point where it gives up and dies off. Who knows if that will work at this point. I am trying to convince lung surgeon to take node out of my lung and put it under the microscope even though they see it as "good scan."
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: 720
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: 4 year cancerversary from stage IV

Postby Rock_Robster » Wed Oct 26, 2022 4:53 pm

Thanks RP and Beach Sunrise, appreciate all the feedback and great point about the dosages. I’ve tried to capture most below - as indicated I’m not necessarily taking all these all the time, but always the core ones at least. Some have a dose range shown as I’m a bit flexible with them. No doubt some of the doses are too low which you can let me know about!

Doses are daily and typically divided morning/evening)

Niacinamide - 2000mg (increasing - meant to be 3000mg)
PSK - 3000mg
Vitamin D - 5000-10000mg
Curcumin - 3200mg equiv. of theracurmin
EGCG/Resveratrol - 400-800mg
LDN - 3mg
DCA - 1000mg
2DG - 1000mg (either this or DCA)
Metformin - 1000mg
Doxycycline - 100mg
Celebrex - 200mg
Beta Glucan - 2000mg
Silymarin - 600mg
Quercetin - 1000-3200mg
Andrographis - 2000-4000mg
Alpha-Lipoic Acid - 150-600mg
Berberine - 1500-2000mg
Melatonin - 30-40mg
Loratadine - 10mg
Aspirin - 300mg

Doc wants me to take phenylbutyrate too which I’m working on but it’s pretty hard to get here. 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. He also wants me to ramp up to 180mg melatonin but I must admit I’m less confident about this one.

Thanks,
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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