My Current Protocol——-All Thoughts/Criticism Welcomed

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beach sunrise
Posts: 673
Joined: Thu Mar 05, 2020 7:14 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby beach sunrise » Thu Apr 21, 2022 5:01 pm

Lay off the salt and stick with the plan!
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"

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Fri Apr 22, 2022 7:24 am

beach sunrise wrote:Lay off the salt and stick with the plan!


Upping water intake, taking Dr Christopher, nixing coffee, and sticking with the plan leading up to jun 13 scans, which I believe will really be an inflection point.
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 TIL Therapy

Tomaz26
Posts: 13
Joined: Fri Feb 04, 2022 12:10 pm
Facebook Username: tomaz.korosec1

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby Tomaz26 » Tue Apr 26, 2022 1:16 pm

We are keeping fingers crossed for perfect scans in june! If at least stable or bit shrinkage you have found a perfect plan for you!

As for chemo, I folded as I could not tolerate even medium dosages of Artemisinin and artesunate, already have tinnitus from takin low dose for a few days, a month after still present. I had palpitations and tachycardia.. Same with a moderate dose of turkey tail and reishi.. Damit.. A few years back I could take 100 supplements and be fine.. Did not even read labels, just popped whatever came along.. After 2020 CAPO chemo everything changed.. Capecitabine fucked my hear obviously and it is now much worse with some supplements as prior to that chemo I never ever had one hart beat of a problems. Was doint interval training, weightlifting for 25 years, no problemos.. Just shows how bad and damanging chemo can be even only 6 cycles..

So yesterday was my first FOLFIRI + MVASI (Avastin analogue).. I managed to persuade them to lower Irinotecan from 500mg to 300mg and will instead be given it 2 weekly instead of every 3 weeks, which is fine for me as I prefer it that way to lower toxicity! And if everything stays like it was yesterday and today this should then be 5x easier than was CAPOX for me.. No neuropathy on this chemo, no naussea for now (took aprepitant).. I went for two longs walks today, have normal apetite, no diarhea, actually pretty normal day. Tomorrow my pump goes off, hopefully I do not get any side effect from tomorrow on, which very well could happen. So just to ease your mind a bit Prayingforcrr if you ever do decide to get on this chemo, it might not be that bad. I pictured it 10 times worse.. I think idealy they lower the dose and go with minimum effective dose instead of maximum tolerable one. More and more institutions now see that it is much better this way.. If they knock me out for a week after chemo then for me it is not worth it.. But if it will be like it is now maybe a few lower energy days when I can still eat normaly and go for a walk, is ok for me.. But lets not get ahead, side effect from MVASI like perforations and blood clots and shit like that can and usualy do happen later.. So maybe my enthusiasm will fade soon :D

Anyway my plan is to be on FOLFIRI + MVASI until next scan and to incoprorate low dose artemisinin, quercetin, curcumin, artesunate, ivermectin, niclosamide and fenben. But some of those will be cycled and dosage will be low, fenben 2 x 250mg daily or so, artemisinin 200mg, artesunate 100mg, ivermectin 6-12mg 4 day on 3 day off. Something like that.. Just to try to attack with chemo + other things at the same time.. And of course will add CBD, THC and CBG. I just hope my livers make it as I guess chemo + those supplements can really fuck me up even more... Paleogenic keto would probably help too as that would keep insuling and IGH1 really low. But eating only red meat + animal fat all day every day, hmm.. :D

Btw did you figure why your kidney results are now high? I would guess any of those supplements that you incorporated must be a reason, if previously they were normal then just think what you added from previous to that scan.. Or what you significantly increased in dose. AS other supps if you took them that long and your levels were fine can now hardly make it higher I would think.. That and of course food. HIgh protein diet I think can increase this, specially red meat. Creatine monohydrate if you take it..

Claudine
Posts: 699
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby Claudine » Tue Apr 26, 2022 1:55 pm

I pictured it 10 times worse


My husband did 18 cycles of Folfiri/Avastin. It got a bit rougher towards the end (mostly in terms of fatigue), but overall it was a piece of cake compared to Xeloda/Oxaliplatin. His hair thinned but he didn't go bald (he even had a colleague who didn't know he was sick and told him "I like the new short hair!"). And it all grew back.
I hope it's the same for you, and that you get good results from it!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Tue Apr 26, 2022 6:40 pm

My kidneys were always borderline because of uncontrolled bp for a long time……..last bloods was 1.8………..I’m going to hydrate, hydrate, hydrate, drink NO beers, and take Dr Christophers kidney support until june scans. I take 500mg of tudca twice a day with food for liver support, Tomaz.

I need to be perfect for 8 weeks to pray for a shot at real improvement.

I’m treating this as a full time job, as I have since I was told about the nodules.

I have alarms set for my protocols, I get at least two hours of filtered sun, and have been swimming 30 laps a day.

I drink orange/beet/apple/ginger juice now during the 21 day artemisinin protocol to help with the wbc.

I can’t imagine status quo for a third series of scans (9 months)

It’ll be one or the other.

Feeling like the gingerbread man, but praying for the best (miracle)
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 TIL Therapy

User avatar
beach sunrise
Posts: 673
Joined: Thu Mar 05, 2020 7:14 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby beach sunrise » Thu Apr 28, 2022 3:45 pm

It is a full time job and so important not to slack any. I slacked a few days off and on and CEA upticked. So, that was my eye opener.
I sometimes do not take my protocol on time because I dread it some days just wanting some normalcy back (mainly in the a.m for some reason).
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"

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Sat Apr 30, 2022 4:03 pm

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 TIL Therapy

User avatar
beach sunrise
Posts: 673
Joined: Thu Mar 05, 2020 7:14 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby beach sunrise » Sat Apr 30, 2022 4:46 pm

Yep, another good anti cancer killer and tapeworms ain't got a chance either.
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"

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Sat Apr 30, 2022 5:11 pm

beach sunrise wrote:Yep, another good anti cancer killer and tapeworms ain't got a chance either.


I’m very excited about this.

Can’t believe I overlooked for so long.
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 TIL Therapy

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Sun May 01, 2022 2:36 pm

Further research indicates that fenben and niclosamide should not be taken together (induces miscarriages in stock animals) so I will replace the fenben with niclosamide IF I believe I can make it effectively bioavailable.
Last edited by prayingforccr on Sun May 01, 2022 4:42 pm, edited 1 time in total.
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 TIL Therapy

User avatar
beach sunrise
Posts: 673
Joined: Thu Mar 05, 2020 7:14 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby beach sunrise » Sun May 01, 2022 3:29 pm

No experience with that. Good to know the contradiction.
I take Ivermectin, Itraconazole and mebendazole with time separations especially with xeloda in the mix it has to be a careful balance.
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: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby Rock_Robster » Mon May 02, 2022 8:59 pm

prayingforccr wrote:(induces miscarriages in stock animals)


Not wanting to ask the obvious questions, but is this a concern if you’re not trying to get pregnant? I mean, most chemo drugs are abortifacients too.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Tue May 03, 2022 5:15 am

Rock_Robster wrote:
prayingforccr wrote:(induces miscarriages in stock animals)


Not wanting to ask the obvious questions, but is this a concern if you’re not trying to get pregnant? I mean, most chemo drugs are abortifacients too.


Hmmmmmmmmm……..I’d love to use both.

Doesn’t seem wise.
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 TIL Therapy

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby Rock_Robster » Tue May 03, 2022 5:33 am

Fair enough
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Sat May 14, 2022 4:59 pm

Rock_Robster wrote:Fair enough


I’m going to do 4 days fenben/3 days niclosamide for the stretch run.

Part of me just wants it all to be over.
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 TIL Therapy


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