My Current Protocol——-All Thoughts/Criticism Welcomed

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

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

Postby beach sunrise » Mon Apr 18, 2022 7:59 pm

What are your CDK levels?
Ashwagandha is good for cellular stress and WBC count.
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

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

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

Postby beach sunrise » Wed Apr 20, 2022 5:19 pm

Goodness! Hopefully just temporary. What's the plan to correct it?
What's your BUN/Creatinine ratio, mg, K, phosphorous, eGFR levels?
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

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beach sunrise
Posts: 1033
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
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

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: 809
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

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

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beach sunrise
Posts: 1033
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
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

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beach sunrise
Posts: 1033
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
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

User avatar
beach sunrise
Posts: 1033
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
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

Rock_Robster
Posts: 1027
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.
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

Rock_Robster
Posts: 1027
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
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

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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

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

Postby Peregrine » Sat May 14, 2022 6:08 pm

prayingforccr wrote:...It’s the best plan I've been able to come up with...

When you finish all of the protocols in your plan and are finally "out of the woods" after your final stretch, would you consider summarizing the basics of your plan for the benefit of others who might want to take advantage of your extensive research?
Thank you.

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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

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

Postby Peregrine » Thu May 26, 2022 9:07 pm

prayingforccr wrote:...
Heading down the home stretch:

  • I have done the 21 day artemisinin protocol twice since last scans
    .
  • Currently:

    I dissolve 2g fenben, .5 t black seed oil, 50mg cbd oil in dmso and top it with grapefruit juice and take with 2 piperine, vitamin e, vitamin d3

    I take 2000 mg of liposomal curcumin with food

    I take ivermectin dissolved in vodka topped with grapefruit juice and two piperine at around 3am every other day

    I take split doses of 500mg cimitedine away from all the others

    I take tudca and melatonin before bedtime for the liver and kidneys.

    I pulse a senolytic stack every 10 days to induce senescence in the cancer cells.

    The senolytic stack is as follows:

    Luteolin 100 mg
    Apigenin 50 mg
    Lipo Fisetin 500 mg
    Lipo Quercetin 100mg
    Resveratol 300 mg
    Grape Seed Extract 100 mg
    Vitamin c 800 mg
    Dhea 50 mg

    Pulse every 10 days

    3g Alcar taken everyday

Hoping it’s working.

I know it’s better than 1957 chemotherapy

Thank you for providing details about artemisinin and about the current protocol you are following. This will be very useful information for other patients who want to take this approach.

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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

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

Postby Peregrine » Mon Jun 06, 2022 11:19 pm

prayingforccr wrote:...
I’m probably not going to pursue any type of SOC treatment unless there is a relatively reasonable chance of remission/ned.

I have no symptoms, weight is good, I exercise everyday.

See what we see June 13/14

I can't imagine a third straight scan of neither progression nor improvement and I am expecting things to go one way or the other.

...

prayingforccr -

Are your next scans still on schedule for June 13/ June 14 ?

If so, when do you expect to have all the results and then the discussions with your team about what to do next?

Another question: Is there still a shortage of IV contrast solution at your hospital? What are you going to do if they cannot do scans with IV contrast this time around?

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

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

Postby beach sunrise » Fri Jun 10, 2022 7:57 pm

Please don't think like that. It will stress your immune system.
One thing I will say is my ND told me from the beginning why I need to take the supplements (he adviced) in does is because your body only absorbs up to 30% of whatever mg it says as suggested. So, I take supplements in higher does 3 times per day. EX: Vascustatin, I take 6 caps T.I.D. I think suggested dose is 2 per day or something like that.
Your protocol is a good one but maybe up your dosage for a fuller impact?
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

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Fri Jun 10, 2022 10:03 pm

LOL PCCR,

You crack me up bro!!, your so dramatic. Guess what my CEA just went from 50 something to 185 :shock: :shock: :shock:

Your mere 6.6 and you tripping saying your going to die LOL...I am going to die, that's what I think almost always, my scans 10-12 new lung mets, some new liver mets. I am going back on FolFiri now to knock things back down and hope it works. You are no where even close to dying bro. I have cancer pain now, I mean I have been at this way longer then you, 5.5 years now fighting. Breaks can cause progression and in my case it did, sometimes I didn't have a choice but to break because of the other issues I had.

Take it easy, 6.6 is nothing to be concerned about, but does it mean no progression probably not, but you are not doing any SOC so the possibility of progression is higher. I really hope the protocol your doing works though, but maybe if things show up on CT, add some chemo in conjunction with your protocol, even though I know this all sucks.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.


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