My Current Protocol——-All Thoughts/Criticism Welcomed

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

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

Postby JJH » Sat Dec 25, 2021 3:13 pm

1. Your updated, expanded signature (subject to correction)
    11/2019: Colonoscopy at xx yrs
    12/2019: Dx Stage 3C, T4bN2bM0, rectal cancer with a 6.6cm tumor invading the external anal sphincter.
    12/2019: MSI status = MSI-H
    12/2019: Baseline CEA = ???
    01/2020 - Start of TNT (Total Neoadjuvant Therapy)
    03/2020 - 20 sessions of radiation, Mon-Fri capecitabine+clinical trial drug m3814 (Preposertib)
    03/2020 CEA = 1.5 ng/mL
    07/2020: 8 treatments FOLFOX
    11/2020 End of TNT standard of care (SOC)
    11/2020 Beginning of W&W passive surveillance period.
    11/2020: Primary tumor had complete response. However, possible tumor deposits on latest MRI. Biopsy negative for cancer.
    12/2020 to 05/2020: Five months of HBOT therapy for treatment of radiation damage
    05/2021: Multiple (nine) lung nodules (3-6mm) on CT scan, six months after completion of TNT.

    08/2021: CT scan update - the bi-lateral multiple lung nodules increased in size.

    10/2021: MD Anderson gives me 1 year without treatment/3 years with FOLFIRI/Avastin (refused)

    03/2022 Will begin 1st-line mCRC immunotherapy Opdivo (Nivolumab)  / Yervoy (Ipilimumab) at NYU/Langone, along with SBRT at Weill Cornell: March 2022 - May 2022, for 10 weeks. Meanwhile, will be doing daily customized CAM protocol for TP53 gene activation
    ===========
    Comorbidities: Weight: 225 lbs = Class 1 Obesity
    Smoker? Y/N?
    Diabetic? Y/N?
    ===========
    Family history - Mother, bone cancer
    ===========
2. Updated TP53 gene activation protocol -- a specialized 1st-line mCRC complementary/alternative medicine (CAM) approach.

    Thank you for your post and for giving the details of your current protocol.

    I have no experience with this kind of protocol, but my questions would be:

    1. What kind of research did you do in order to arrive at such a diverse collection of medications/supplements?
      Liposomal Artemisinin
      Vitamin C
      Sodium Butyrate
      Fenbendazole (Panacur)
      DMSO ( Dimethyl Sulfoxide )
      CBD oil (Cannabidiol)
      Curcumin
      Cimetidine (Tagamet)
      Quercetin
      Berberine (Berberine Hydrochloride)
      IP-6 (Inositol Hexaphosphate - Phytic Acid)
      Serrapeptase
      TUDCA ( Tauroursodeoxycholic Acid )
      Ivermectin
      Vodka
      Black seed oil
      Grapefruit juice
      Boswellia serrata
      Mullein tincture
    2. How do you know that all of these items will be mutually compatible with no significant or dangerous interactions?

    3. Does your oncologist know that you are taking all of these things?

    4. How did you determine the timing for taking the different items (i.e., before, during, or after meals; or morning vs. afternoon vs. evening, etc.)?

    5. How do you manage to buy confirmed high-quality products rather than poorly manufactured, contaminated, or falsely advertised products?

    Thank you.
Last edited by JJH on Thu Dec 30, 2021 8:53 am, edited 1 time in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

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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 Dec 25, 2021 8:07 pm

Sounds like a pretty good plan. I take 3 different azoles plus xeloda.
No Bromelain or melatonin?
How much C per day?
Also, when using DMSO, you are taking it in distilled water?
I use DMSO, good stuff. Took a while to know all I could possibly find on it thru the internet and books.
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 » Sat Dec 25, 2021 10:41 pm

The grapefruit juice is an interesting concept.
DMSO is a great anti-inflammatory also so you are getting a bonus there.
Do you take it every day?
I have read it stays in the body for 3 days. So, thats my protocol as of now. I take it with all the lung stuff ND suggested. And use it topically for inflammation.
Do you take boswellia serrata? Good stuff also for lung health studies show.
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 » Sat Dec 25, 2021 11:55 pm

Sounds like you are on it! Good for you.
Research high level D3+K2 and Niacin for cancer if you are not already taking these. I take high dose of both.
Orthomolecular.org is a great site if you haven't heard of it.
I absolutely love mullein tea with cinnamon. Great for lung heath mullein is.
IVC is proven for years to fight cancer. It's the top thing for me and what has kept me so stable for over 2 years.
I will looking for updates from you on your protocol.
I have until March on current protocol til next scan so hoping for good results still on 2 lung nodes showing up. Not growing or liting up or anything. Been there for over 2yrs but with cancer everything puts me on edge to pay attention and like you said "beat the living s*** out of it" every day.
One more thing, I only use coconut oil now as body lotion. Good stuff also. Read about it. Some people take it internally. I do put it in my coffee, the MCT version with the C8-C10 C12 in it.
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
JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

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

Postby JJH » Mon Dec 27, 2021 12:43 am

Another comment. Your current protocol is different from the one you posted back in November 2020.

viewtopic.php?f=1&t=65089&p=506451#p506451

Is your new protocol actually a hybrid protocol designed to address COVID-19 in addition to cancer? I notice that you now have Ivermectin in your protocol. And what about COVID-19 vaccine? Are you fully vaccinated now?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

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 » Wed Dec 29, 2021 2:42 am

You catching up with me :) I've been on black seed oil for a while.
Another one for TP53 is pomegranite extract (I take it in high dose) and another one I can't think of right now (might be mulberry). Will post when it comes to mind.
Ah, here it is
https://www.medsci.org/v19p0089.pdf
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 » Thu Dec 30, 2021 2:14 pm

With celebrex I am careful not to overdo it with aspirin.
I do take aspirin when bloodwork shows I need to.
Lately I have been taking one celebrex in the morning then half a 325mg aspirin at night diluted in water. Diluting it makes it easier on the liver I believe.
I have read on here someone took celebrex morning and night along with a low dose aspirin in the daytime. Can't remember who posted though.
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 » Sat Jan 15, 2022 6:14 pm

Ah, Artmenisin, sweet wormwood. I have researched it extensively. Supposedly according to one impressive study it was found to kill cancer cells with great active success. Builds natural killer cells, ect. Anti- parasitic, anti-cancer and other ailments. Good choice probably!
What is your administration dosage/time schedule for the 21 days?
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 » Sat Jan 15, 2022 11:00 pm

Thanks! I will check it out. Powerful stuff!
Was going to mention iron as enhancer but you already know :)
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 Jan 16, 2022 12:27 pm

Just my opinion here: Nope, not crazy at all. It seems people do better when they advocate for themselves with personalized treatment. So, you are on the right track for sure.
Really, by going personalized, pulling in an ND and intergrative would reveal more set targets to block pathways involved in spread.
All the things you have mentioned that you are trying are things I have had discussions of with ND and intergrative.
Example: For me, we closely watch certain pathways (3 of them) that my cancer tries to spread to while keeping an eye on other ones to make sure they don't become out of balance. With cancer, it tries every way it can to set up camp using several ways if needed. Concentrating on one protocol might be good idea for you if you only have one pathway cancer keeps trying to break through but for me I have to use several different protocols based on different pathways out of range to bring them back into range. So far nothing to report "on scans" but CEA is still out of range and bloodwork shows something is going on. I am trying to beat it to death slowly over time I guess is the best way to say it by using several different protocols at the same time.
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 Jan 16, 2022 12:43 pm

I got tickled at that truth too!
Being an active researcher is great, but sucks too.
Do you know your weak pathways?
Artemisinin from what I've read targets several which is why is it so good to have in the arsenal. Common dose I've seen a few times is 450-600mg B.I.D. along with low dose iron.
Are you still on the other protocol also? The one with DMSO and grapefruit juice?
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 » Sat Jan 22, 2022 7:19 pm

IVC is a good idea! It is the top thing I do to stay sable and kill cancer. So much research documented about it on orthomolecular.org
How are your liver counts with using grapefruit juice and dmso?
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 Jan 30, 2022 5:24 pm

I feel ya on scans. Surgeon says if nothing shows up in March we will move to 6 month scans instead of the 3 month ones we have been doing. He and onc think maybe something else is going on because of CEA and nothing found in 2 1/2 years except the primary tumor. I'm not convinced at all and argue the point with both of them that mCRC can hide for up to 10 years+ then BAM you are stage IV with limited standard options or find your own path.
I have Signatera next week and scan in March also.
A big expanded blood panel next week too.
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 » Mon Jan 31, 2022 10:00 pm

Recurring is always a worry.
Keep immune system high and inflammation (markers) low.
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 » 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! :)


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