My Current Protocol——-All Thoughts/Criticism Welcomed

Please feel free to read, share your thoughts, your stories and connect with others!
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 » Fri Feb 04, 2022 1:32 pm

Hi Prayingforccr,


reading your story is almost like I read my thought in my head! :D I also declined folfiri, declined cetuximab as after first round I had to many side effect and now I am waiting and deciding what do to next.. I still have
my primary rectal which just started to grow again and 6 lung mets, biggest one is now 1.5 cm and others are a bit smaller. No surgery possible as they are scattered accross lungs, no SBRT possible. Only thing they offer
me is chemo, and I hate it.. I am always for quality of life above quantity.. Even at 41 years... It really doesnt help me much if chemo adds 6 months to my life if then those 6 months are spent in bed, nausseated, no sports,
no way to travel.. I do not have kids or family so it is even more imporant for me to have quality of life. And when off chemo I feel perfectly fine.. Like you I also found Curt Graydon, Joe Tippend and Jane Mclleland on top
of some other groups and will shortly start artemisenin protocol. For now I mostly take about 40 supps, but I doubt this will make any change.

I would suggest modified citrus pectin which also has a lot of good studies behind it.. Combined with magnolol even better.. From off labels I saw you do fenben and iver, I saw a lot of positive posts also for niclosamide.. I have
not yet tried any of those, only low dose iver, but will now slowly add them.. No COC protocol as I am from Slovenia and practically impossible to get those drugs.. DId metformin and low dose statin for a while, but stopped..

I have no known mutation and MSS. Was on wait and watch after chemoradiation and had a CCR for 9 months, then PET shown recurrence in rectum and lung mets.. Maybe surgery would take care of it and I would not have to deal with
lung mets and recurrence, on the other hand many had surgeries and still later developed mets so hard to tell.. Also my status was EMVI+ when DX so this was a bad prognosis from the get go..

Good luck and keep us updated on how the prococol goes. I hope you get all clear in next scans! :)

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

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

Postby beach sunrise » Fri Feb 04, 2022 6:56 pm

No mutations is one in your favor.
Keep immune system high and inflammation low.
What blood markers do you follow aside from SOC if any?
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: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sat Feb 05, 2022 10:51 am

How often are you monitoring your progress, Tomaz?
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. Possible tumor deposits on latest mri. Biopsy negative for cancer.
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…..most showing cavitation.

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 » Sun Feb 06, 2022 3:07 pm

beach sunrise wrote:No mutations is one in your favor.
Keep immune system high and inflammation low.
What blood markers do you follow aside from SOC if any?


You think it is good regarding mutations? I dont know, they way I read it I am in disandvantage as there are a lot of drugs that target those specific mutations, braf, kras etc and I cannot use any of them.. The only advantage I found is with
cetuximab as they say that it works much better in right sided KRAS wild type cancers like mine, but on the other hand I only received one shot and canceled all the rest.. I should go there weekly and I did not recover 14 days after the
first one so ugh.. For Oxi in 2020 it was not that bad as I was max up to 3 days out, then had one so so week and one almost normal week before going in again :D

My immune system I think works very well judging by the blood pannel as it is just crazy that my CEA and CA-19 were always normal, when I had 4x6 cm big tumor in rectum they were normal and also now that I have recurrence and
mets they are stil normal.. But I guess that is how it is with MSS cancer which hides from the body.. SO body does not send troops to fight it hence no inflamation and good blood panel. Also my CRP blood sedimentation and everything else is perfect from the get go.. If one would look only at my blood panel he would deduct that I will live up to 100... :D I do have slightly higher blood sugar, almost prediabetic, but that has been like that for years and my HbA1C is low. Also I have high
SUM of cholesterol for 20 years+ although here too my HDL is very high.. I am borderline underweight my whole life, doing lots of sports, gym etc.. I did manage to smoke for 20 years so there is that.. Oh and my diet was mostly sugar, sweets, hamburgers, lots and lots of red meat, protein powders, BCAA and other nonsense so yeah, I think this is what did it.. Oh and no veggies and occasionaly a banana :D :D :D Some alcohol too so If I look back there were plenty of cancerogens in
my life and because I have no mutations I think this is even more proof I did it with food, stress, too much siting and computer time,...

Sorry for long post :D

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 » Sun Feb 06, 2022 3:08 pm

prayingforccr wrote:How often are you monitoring your progress, Tomaz?


About every 3-4 months.. Depends on how they schedule me. I have next screening in march, the previous one was 6th of december.

How are you doing? You will start this trial you talked about in other topic soon?

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Feb 06, 2022 5:54 pm

Tomaz26 wrote:
prayingforccr wrote:How often are you monitoring your progress, Tomaz?


About every 3-4 months.. Depends on how they schedule me. I have next screening in march, the previous one was 6th of december.

How are you doing? You will start this trial you talked about in other topic soon?


I have scans march 14-15

I would love a reprieve of another 3 months, but I don’t think its in the cards.

We’ll see what we see.

If scans are remarkably positive, it means the artemisinin protocol works.

Will certainly update.

I’m going to inquire about car-t and dendritic therapy as I’m not so convinced opdivo/yervoy will help me as I am MSS

God bless us all.
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. Possible tumor deposits on latest mri. Biopsy negative for cancer.
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…..most showing cavitation.

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 » Mon Feb 07, 2022 11:40 am

Are you doing artemisenin like curt suggests? I am afraid of taking 10 capsules on an empty stomach.. :shock: I have 100mg and he suggest 1000mg per day.. Together with capecitabine I currently take and many other supps I think my kidneys and liver will not survive :D

How about diet? I go back and forth between keto or Gerson or... I mean they all have points.. There is tons of research pointing to keto being good, fasting too, specially before chemo etc.. On the other hand you have Gerson and the like which is just the oposite, no fat and loads of carbs.. I know of a person who tracks long term survivals from diet and 90%+ do some vegy style. Here and there some keto, but mostly for glioblastoma where I think it has been quite successfull, specially with a substance called DON that also blocks glutamine..

I was thinking of maybe doing some extreme style diet, like fasting for 30 days and taking some FAO/FAS blocker or something similar.. I did read of a lady who did fasting mimicking diet for 6 months, lost 25kg in the process but also her tumor disassapeared slowly as being eaten away.. She had regular checkups and imaging and each month it was a cm smaller.. But it was not CRC. As healthy cells are much more adaptable than cancer cells which are caught in a loop of fermentation etc I think there could be a way there, but one would have to block some pathways and leave some open so regular cells still get energy.. Cancer likes to grow, for other cells it is enough to just stay as they are, recycling etc.. But yeah, maybe I just dream too much :D

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Mon Feb 07, 2022 3:45 pm

Tomaz26 wrote:Are you doing artemisenin like curt suggests? I am afraid of taking 10 capsules on an empty stomach.. :shock: I have 100mg and he suggest 1000mg per day.. Together with capecitabine I currently take and many other supps I think my kidneys and liver will not survive :D

How about diet? I go back and forth between keto or Gerson or... I mean they all have points.. There is tons of research pointing to keto being good, fasting too, specially before chemo etc.. On the other hand you have Gerson and the like which is just the oposite, no fat and loads of carbs.. I know of a person who tracks long term survivals from diet and 90%+ do some vegy style. Here and there some keto, but mostly for glioblastoma where I think it has been quite successfull, specially with a substance called DON that also blocks glutamine..

I was thinking of maybe doing some extreme style diet, like fasting for 30 days and taking some FAO/FAS blocker or something similar.. I did read of a lady who did fasting mimicking diet for 6 months, lost 25kg in the process but also her tumor disassapeared slowly as being eaten away.. She had regular checkups and imaging and each month it was a cm smaller.. But it was not CRC. As healthy cells are much more adaptable than cancer cells which are caught in a loop of fermentation etc I think there could be a way there, but one would have to block some pathways and leave some open so regular cells still get energy.. Cancer likes to grow, for other cells it is enough to just stay as they are, recycling etc.. But yeah, maybe I just dream too much :D


I’m doing curt’s protocol to the letter.

No special diet, but when I was in chemo, I went from 210 to 135 to get into a deep ketosis.
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. Possible tumor deposits on latest mri. Biopsy negative for cancer.
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…..most showing cavitation.

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Feb 13, 2022 3:29 am

Adding 50mg liposomal apigenin every 6 hours for the home stretch.

Scanxiety is starting to loom large :(
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. Possible tumor deposits on latest mri. Biopsy negative for cancer.
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…..most showing cavitation.

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 » Wed Feb 16, 2022 2:54 pm

Keeping fingers crossed results come out good!

You said you tried deep ketosis. Do you think it helped? As more and more evidence comes out specially keto + chemotherapy. I tried it once for 14 days but hated it.. BUt if I knew it would help I would
stick with it for sure.. On the other hand like I said there is Gerson which is just the opposite and also good results.. No fat, fruit juices which is all sugar,.. Go figure.. :D

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Wed Feb 16, 2022 5:11 pm

Tomaz26 wrote:Keeping fingers crossed results come out good!

You said you tried deep ketosis. Do you think it helped? As more and more evidence comes out specially keto + chemotherapy. I tried it once for 14 days but hated it.. BUt if I knew it would help I would
stick with it for sure.. On the other hand like I said there is Gerson which is just the opposite and also good results.. No fat, fruit juices which is all sugar,.. Go figure.. :D


I basically starved myself to the bone.

Was very instinctual.

Went from 220 to 140.

Now at 195 and stressing over new scans in march.

But, at least ive rebounded, even if and probably only temporarily.
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. Possible tumor deposits on latest mri. Biopsy negative for cancer.
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…..most showing cavitation.

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 » Thu Feb 24, 2022 1:46 pm

I hear ya. I went from 150 lbs to 130 lbs, intentionally to "starve" cancer, until I figured out that this approach has probably more negatives than positives as it just raises cortisol and puts
body in additional stress.

As for diet I am still unsure which way to go..

Keto (Sigfried, Nasha Winters, Dom D Agostino, Paleomedicina.com), vs Plant based (grape cure, carrot cure, Gerson therapy)? They are the oposite. One is all fat, the other almost zero fat.. So which is it now? Ray Peat and Georgi Dinkov are all pro sugars and fruits and publish a lot of data showing fat is the main problem not demonisation of sugar as body anyway turns other sources to sugar. They say fasting + IF is just putting stress to the body, raising cortisol which raises stress response which is bad for cancer patient. Or is best low methinone diet to lower IGF-1? I think keto + chemo is gaining traction but again, just depends who you listen too.

Jody Ledley tracks long term stage 4 cancer survivors and almost all (now already 100+) turned to some version of vegan diet. You can find her table in below link:

https://onedrive.live.com/view.aspx?res ... &sw=bypass

A must read from Georgi Dinkov on below link, showing how fat is the main driver of cancer. And not even dietary fat as cancer just makes its own!! Acidosis (Warburg Effect) drives cancer through increased fat oxidation (Randle Cycle)

http://haidut.me/?p=653

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Tue Mar 15, 2022 1:47 pm

Update:

Minimal to no growth in lung nodules.

Many are cavitated (apoptosis?)

Decrease in mural bowel thickening.

Hepatic nodule resolved.

No treatment at this time.

Rescan in 3 months.

Happy, happy, happy
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. Possible tumor deposits on latest mri. Biopsy negative for cancer.
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…..most showing cavitation.

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

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

Postby beach sunrise » Tue Mar 15, 2022 2:15 pm

WooHoo!!! Way to go pccr.
Keep up with protocol...hammer it and hammer some more.
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: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Tue Mar 15, 2022 2:20 pm

beach sunrise wrote:WooHoo!!! Way to go pccr.
Keep up with protocol...hammer it and hammer some more.


I’m stunned.

Going to do the artemisinin 21 day protocol again.

The ivermectin dissolved in vodka every fourth day.

2000 mgs fenben/1000 mgs curcumin/40mgs cbd oil 5 days a week.

Teaspoon of black seed oil daily.

And will add iv vitamin c 3x a week.

At least 3 more months enjoying the beaches of south florida with my doggie.
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. Possible tumor deposits on latest mri. Biopsy negative for cancer.
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…..most showing cavitation.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: msusta and 6 guests