My Current Protocol——-All Thoughts/Criticism Welcomed

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Tue Apr 05, 2022 7:56 pm

I love you found a low toxic protocol that works for you!
Personalized immunotherapy. Rp has talked about this so much.
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

jsbsf
Posts: 107
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Tue Apr 05, 2022 8:07 pm

Hi Prayingforccr,

Have you taken Turkey tail (psk)? That, along with Modified citrus pectin, has been a big part of our daily routine for a long time. We also started back on Ip6 w/ Inositol. Now taking 2 6.9g scoops in water, daily.

We started back on the fenbendazole (1g daily 3 days on and 4 days off). I read somewhere that adding olive oil to it woul help it be absorbed.

I’m wondering if there is anything specific that might help prevent/delay high grade dysplasia from progressing to cancer.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: significant improv.
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Thu Apr 07, 2022 1:40 am

jsbsf wrote:Hi Prayingforccr,

Have you taken Turkey tail (psk)? That, along with Modified citrus pectin, has been a big part of our daily routine for a long time. We also started back on Ip6 w/ Inositol. Now taking 2 6.9g scoops in water, daily.

We started back on the fenbendazole (1g daily 3 days on and 4 days off). I read somewhere that adding olive oil to it woul help it be absorbed.

I’m wondering if there is anything specific that might help prevent/delay high grade dysplasia from progressing to cancer.


Phenols definitely would help I think. Enhance oxygen while reducing free radicals in turn reduces oxidative stress. Grapeseed (Japanese knotwood) high dose, AMLA, Ginseng, Ashwaghanda, Cordyceps, Astragalus, Niacin. Many more.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Thu Apr 07, 2022 9:49 am

I hope your findings encourage others to research personalized care for their benefit.
I might start doing your method of DMSO with what I take that equals yours.
I'll be waiting on your scan report posting.
What are your markers looking like besides WBC? Inflammation, tumor markers, ect?
Whey Protein Concentrate, grass fed might help with WBC. I take it twice a day, full scoop and believe it has helped mine. All the amino acids and probiotic gut helpers, fiber.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Thu Apr 07, 2022 6:12 pm

Black Seed is suppose to be good for WBC from what I read.
Also read cat's claw and astragalus are good for WBC.
Have your doc check your T&B Lymphs maybe?
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Fri Apr 08, 2022 3:00 pm

Yep, most common mutation.
Phytonutrients. A big one is pomegranite extract. Might be only phytonutrients studied by our official gov't NIH, go figure!
Also think about ATP as it relates. Mitochondria.
It is also found in "Independent studies" that radiation plays a role in mutations. Melatonin helps protect DNA from radiation damage.
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

jsbsf
Posts: 107
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Tue Apr 12, 2022 4:15 pm

I tried sending a PM to prayingforccr, but it seems stuck in the outbox.

We ordered black seed oil and have been taking it for a few days. Seems good no matter what. Only taking the recommended 500mg 2x/day for the time being. We will most likely know in a couple weeks if the High Grade Dysplasia is accompanied by cancer cells and/or if any cancer has spread. Just trying to get our ducks lined up…

An MRI is scheduled for next Monday 4/18. An Ultrasound with biopsies is scheduled for Wednesday 4/20.

I’m wondering if there is a particular brand of Ivermectin that has a good reputation. I didn’t understand what a “click” meant, as in 5 clicks. Is there some sort of clicker on the container that dispenses the supplement?

He hasn’t had chemo for coming up on 2 years.

Is Ivermectin meant to be an alternative to Fenbendazole? Or can those be used together? Don’t want to risk toxicity if it’s not necessary.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: significant improv.
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Tue Apr 12, 2022 4:22 pm

Black seed oil is potent. I take 2 500mg 2x per day. A quote from a famous person before Christ I believe is quoted as saying "Black Seed Oil cures everything but death"
Someone correct me if I am wrong but tractor supply ivermectin is 1 click per 50 lbs.
No idea is you can take IVM and fenben together.
I do take IVM, mebendazole and Itraconazole all in the same day with time seperations.
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

jsbsf
Posts: 107
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Tue Apr 12, 2022 6:04 pm

Thanks!

Wanted to throw this out there: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8539981/

What stood out for me is that one particular brand of curcumin has “curcuminoid bioavailability by about 30 fold over standard turmeric extracts”
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: significant improv.
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Tue Apr 12, 2022 9:46 pm

Interesting article. I will have to investigate the curcumin they tested.
From what I have read black raspberry extract (berrihealth) has more anthocyanins than any other berry.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Wed Apr 13, 2022 7:12 pm

I take high dose IVM every 72hrs.
I have not read anywhere about high dose every day. Have heard high dose for 5-7 days of cv19.
I believe it crosses blood/brain barrier.
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

jsbsf
Posts: 107
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Thu Apr 14, 2022 4:37 pm

beach sunrise,

prayingforccr takes 5 clicks IVM every 4th day, how much do you take every 72hrs? I ordered it on AMZN and expect 2 tubes next week.

DH weighs roughly 170 lbs. It’s a good weight. At his worse he was about 140.

Is there a rule/protocol for IVM? I’m having a hard time finding information.

- Currently he took his 3rd round of Fenbendazole (been taking a gram daily M-F).
- 2x200mg Tagamet daily, breakfast and mid-morning
- 4x ~500mg Turkey tail daily (he takes 3 brands: host defense, mushroom science and Noomadic): 2 in morning, 2 at night.
- 2x 500mg Black Seed Oil (starting a 3rd today), distributed over the day
- 2x 5.9g IP6 w/Inositol (cell forte), mid-morning and night
- 3x (2@1000 mg (12.5% anthocyanins), 1@100mg (36%) Bilberry extract, with the black seed oil.
- 2x 500mg Meriva Curcumin
- 2x 5g MCP
- Alternate b12 or B complex daily
- 5000mg d3
- 1x 1200mg berberine (morning)
- 1x 880mg quercetin w/ bromelain

I gave him a milk thistle today, but that’s not a daily thing.

He’s getting a Fine Needle Aspiration biopsy next week and I’ll double his Tagamet 5 days before and 2 days after.

So, now I plan to incorporate the IVM, probably without the Fenbendazole. Just don’t know how to do it safely. He’s tolerating all the above extremely well, and feels great.

The thing is as far as I’m aware he’s currently still NED, but high grade dysplasia seems to indicate the possibility of recurrence and I want to hold off any possible progression until a “cure” is available.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: significant improv.
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Thu Apr 14, 2022 7:13 pm

I weigh 100lbs and take 36mg every 72hrs per onc rx.
There are several different protocols out there used successfully.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Thu Apr 14, 2022 7:45 pm

I just read from Dr. LaValley that since curcumin is poorly absorbed to take capsule contents and boil in 2 cups of water for 10 minutes to release the 95% curcuminoids (sp?) and drink twice a day.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Sun Apr 17, 2022 11:05 pm

Seems like it is working killing the cancer. No one knows your body or your cancers behaviour better than you.
I have adopted a few ways of yours with some things we take the same. Thanks!
I read the article. Impressive!
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


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



Who is online

Users browsing this forum: No registered users and 37 guests