Interested in chronomodulated Xeloda

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JB09
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Interested in chronomodulated Xeloda

Postby JB09 » Mon Nov 08, 2021 8:11 pm

Hi All,

This forum is new to me, yet, fascinating. My husband is BRAF V600e. He was originally stage 3b with 5/55 lymph nodes positive. Within 8 months it came back in his liver. He had 12 sub centimeter lesions scattered through out his right lobe. Once it returned, I knew we needed to up the ante. I enlisted the assistance of an integrated oncologist. I truly believed in chronomodulated chemotherapy and high dose Vit-C. We have been doing chronomodulated chemotherapy, with 6 vitamin infusions along with Folfoxiri+Avastin. My husband has had a great response. They can't even find the lesions on a PET. We were offered oral Xeloda and 5FU. My question is does anyone here do Xeloda and 5FU chronomodulated? Also, what IV infusions are essential to keep this beast away. Liquid biopsies show BRAF wild type cells. I am afraid to make this jump without a good plan to supplement with timed chemo that promotes immune function with a combo of vitamins.

Anyone out there who has had this experience with an aggressive mutation and had success? I have come across a few posts that encourage me. I love to connect with like minded people. I also think you all are amazing!!

Rock_Robster
Posts: 608
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Interested in chronomodulated Xeloda

Postby Rock_Robster » Tue Nov 09, 2021 1:53 am

Great news on the response! I’ll leave the chrono piece to others more knowledgable to respond too.

Interesting one on the LB though. While I’m not aware that one can be “cured” of the BRAF mutation itself (ie permanently wild-type), it’s certainly possible to reduce the mutation burden through therapies (especially heavy hitters like FOLFOXIRI). I wonder if this could open up the case to try an EGFR inhibitor (eg Vectibix/Erbitux), as one would for a RAS/BRAF wild type? The alternative would be a BRAF inhibitor (as in the BEACON doublet/triplet), but with low levels of detectable BRAF mutation perhaps it makes more sense to save this one.

I do understand though that ongoing LBs can be a very useful tool in fighting v600e, and being able to respond to histopathological and biomarker changes more quickly than if relying on scans and solid biopsies.

Silly question - I assume MSS/MSI-L? I think you might get the “please make a signature” comment here shortly… :wink:

Good luck,
Rob
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then 2.0 - 3.1. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation
07/19 ULAR w ileo, 1/27 LN+
08/19 Liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (since Dec-19)
11/21 New liver lesion (celiac node?), 4 v. small (<2mm) indeterminate lung things

rp1954
Posts: 1588
Joined: Mon Jun 13, 2011 1:13 am

Re: Interested in chronomodulated Xeloda

Postby rp1954 » Tue Nov 09, 2021 2:06 pm

JB09 wrote:Hi All,
We have been doing chronomodulated chemotherapy, with 6 vitamin infusions along with Folfoxiri+Avastin. My husband has had a great response. They can't even find the lesions on a PET. We were offered oral Xeloda and 5FU. My question is does anyone here do Xeloda and 5FU chronomodulated? Also, what IV infusions are essential to keep this beast away. Liquid biopsies show BRAF wild type cells. I am afraid to make this jump without a good plan to supplement with timed chemo that promotes immune function with a combo of vitamins.

Six IV vitamin C or other vitamins too? Doses?
What region of the country are you in?

5FU is the infusion and xeloda is oral, pick one, although the only chronomodulated 5FU I know is Block Center and they have "terrain based" supplement recommendations.

You need to understand IV vitamin C reduces cancer cell sugar content because glucose and partially oxidized vitamin C are so close that the vitamin C collects there. So this can reduce the cancer cell's FDG (PET) signature substantially, as well as its sugar habit.

People here have worked through a variety of support sources for supplement recommendations typically based on some kind of terrain testing: Berlanger, Donny Yance, Riordan Clinic, Life Extension Foundation.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

JB09
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Joined: Sun Nov 07, 2021 6:21 pm
Facebook Username: Jaime Baskin

Re: Interested in chronomodulated Xeloda

Postby JB09 » Tue Nov 09, 2021 6:37 pm

@rp1954

I am SOOO elated you responded. 6 different infusions. IV-C, Curcumin, Quercetin, Reservatrol, Glutathione and a multivitamin. I'd have to look up doses.
We are located in the midwest. He also takes supplements: Metformin, a statin, Boswella, 10,000 iu of Vitamin D3, Lipolic Acid and a proprietary blend of L-Taurine, Milk Thistle Extract, Grape seed extract, Ubidecarenone and Acetyl L Carnitine...along with some other extracts I don't have in front of me (all compounds of this blend).

I have read some of your posts, after I posted mine. Riveting. Congrats on your successes. Your theories and cited studies align closely with mine. I have always thought it to be common sense that the idea of high dose chemotherapy was counter productive to the idea of priming one's body to fight off cancer. My analogy is to liken it to a weed wacker. It destroys everything in it's path, but never addresses the root of the cause.

After posting this, I found the "mother load" of info in your messages on here. I actually missed this reply, until now, sifting through around 10 years of your journey. Life Extensions is a brand we buy often. We do run a terrain panel every 3 months. Bloods every other week.

Your unequal dosing of Xeloda aligns with my hypotheses.

Any other thoughts, suggestions or ideas would be more than welcome.

JB09
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Joined: Sun Nov 07, 2021 6:21 pm
Facebook Username: Jaime Baskin

Re: Interested in chronomodulated Xeloda

Postby JB09 » Tue Nov 09, 2021 8:46 pm

I should mention we do get treated through the Block Center and do chronomodulated Folfoxiri+Avastin.

JB09
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Joined: Sun Nov 07, 2021 6:21 pm
Facebook Username: Jaime Baskin

Re: Interested in chronomodulated Xeloda

Postby JB09 » Tue Nov 09, 2021 8:52 pm

@Rock_Robster liquid biopsies, targeted and general, show no CTC’s. We did Guardant and Biocept for CTC’s, KRAS and BRAF. Both came back as wild type, two sets, one from Feb and then August. I know BRAF is always a driver mutation. I’d like to keep the status quo w chronomodulated Xeloda, Vit C, Curcumin and some supplements. Immune function is my focal point.

Working on that signature :wink:

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beach sunrise
Posts: 557
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Re: Interested in chronomodulated Xeloda

Postby beach sunrise » Wed Nov 10, 2021 1:43 am

PSK, whey protein ect. Things to work on microbiome? What cancer pathways are you targeting and with what?
I am borderline stageIV if not already just not showing on scans yet. I am on a personalized low toxic ADAPT+++. Consists of xeloda (every day), IVC (9,100g total so far in one year), celebrex, D3+melatonin and many other supplements to block cancer pathways (based on bloodwork) and hit mutations hard with what we know works so far based on independent studies.
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"

rp1954
Posts: 1588
Joined: Mon Jun 13, 2011 1:13 am

Re: Interested in chronomodulated Xeloda

Postby rp1954 » Wed Nov 10, 2021 2:30 pm

I certainly would be interested to see the series of markers, inflammation markers and cytokines that you have to date vs doses.

We have very little inflammation data presented as yet, and Block Center certainly could use more definition as an option here.

As for adjuncts for BRAFv600 I might try to couple basic data from Block with perhaps more frequent interval data with generation of news options or leads to see effects if possible.

I'm a little hazy on how tight the Block blood are run - not having been there.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

JB09
Posts: 19
Joined: Sun Nov 07, 2021 6:21 pm
Facebook Username: Jaime Baskin

Re: Interested in chronomodulated Xeloda

Postby JB09 » Wed Nov 10, 2021 4:37 pm

rp1954 wrote:I certainly would be interested to see the series of markers, inflammation markers and cytokines that you have to date vs doses.

We have very little inflammation data presented as yet, and Block Center certainly could use more definition as an option here.

As for adjuncts for BRAFv600 I might try to couple basic data from Block with perhaps more frequent interval data with generation of news options or leads to see effects if possible.

I'm a little hazy on how tight the Block blood are run - not having been there.

JB09
Posts: 19
Joined: Sun Nov 07, 2021 6:21 pm
Facebook Username: Jaime Baskin

Re: Interested in chronomodulated Xeloda

Postby JB09 » Wed Nov 10, 2021 8:31 pm

rp1954 wrote:I certainly would be interested to see the series of markers, inflammation markers and cytokines that you have to date vs doses.

We have very little inflammation data presented as yet, and Block Center certainly could use more definition as an option here.

As for adjuncts for BRAFv600 I might try to couple basic data from Block with perhaps more frequent interval data with generation of news options or leads to see effects if possible.

I'm a little hazy on how tight the Block blood are run - not having been there.


I think my reply did not go through. If you want to message me your email, I will gladly share a copy of his entire terrain panel and blood markers. I have an appointment with Block in a week. Like an oncologist prescribes an upfront megadose chemo protocol, ie: Folfoxiri+Avastin, Block has a core regimen of infusions and supplements, for stage 4. As treatments start lessening disease burden, ie: good response, he tends to tweak these treatments based on terrain, bloods and a bit of patient advocacy. He closely monitors immune function, which is factored in as well. The idea of signal analysis and N=1, as you have demonstrated is my aim. Precision medicine, if you will. This pivotal point for us will provide a lot of information on how the residual disease will function. Up front, I would like to be proactive and avoid being reactive at all cost. I'm interested in hearing your methods of analyzing your wife's cancer behavior, through chosen blood markers correlate to the mechanisms of action in each supplement choice, while on chronomodulated Xeloda. I can take a guess, but precision is the key. Reversing the dysfunction in cell signaling, or engaging the immune system to do so, while making strategic moves, is my ultimate goal.

I know this is a lot, but I believe in your ability to shed light on this.

Also, I do believe Block feels as if he is able to determine inflammation based on his terrain. I can clarify if you'd like to see it. Of course, additional advice or input is ALWAYS welcome.

JB09
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Re: Interested in chronomodulated Xeloda

Postby JB09 » Wed Nov 10, 2021 9:19 pm

beach sunrise wrote:PSK, whey protein ect. Things to work on microbiome? What cancer pathways are you targeting and with what?
I am borderline stageIV if not already just not showing on scans yet. I am on a personalized low toxic ADAPT+++. Consists of xeloda (every day), IVC (9,100g total so far in one year), celebrex, D3+melatonin and many other supplements to block cancer pathways (based on bloodwork) and hit mutations hard with what we know works so far based on independent studies.


We are hitting them all. It’s not an extensive list but more of pure proprietary blends Dr Block makes, or through Life Extension. Along with the above 6 infusions. What do your markers look like? Have you gotten an MRI of your liver? It’s the most common organ for spread. Peritoneal mets are also common and require more extensive testing. My husband was a stage 3. His blood markers began to rise. I had 3 consecutive scans at Northwestern, which I fought hard for, as insurance rarely covers scans that close together. Pathology doesn’t equal radiology!!! Low and behold, an mri picked up teeny tiny lesions that a CT and PET did not. That afforded us 3 months of time we didn’t have to waste. I was relentless!!

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beach sunrise
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Re: Interested in chronomodulated Xeloda

Postby beach sunrise » Wed Nov 10, 2021 11:01 pm

Markers all look good except IL8. It goes up and down for some reason. I have wondered if it does this because sometimes I walk the dogs before bloodwork. Idk. CEA has always been above normal. So, its anyones guess. I have scans every 3 months CAP CT, PET,MRI in intervals. Have a CAP CT, in a few weeks then MRI end of Feb. The CBC and CHEM markers are good. vWF went up once, knocked it down fast. Not a problem since. VEGf serum and plasma are in good range. CD4 helper is low. Got to try to address that one more. There are many more and all in good range.
What are some of the nutrition parts Block recommends? I need to gain some weight.
I take a prebiotic blend in am, whey protein and plant based powder shakes, probiotic then a post biotic before bed to keep butyrate level good..
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"

JB09
Posts: 19
Joined: Sun Nov 07, 2021 6:21 pm
Facebook Username: Jaime Baskin

Re: Interested in chronomodulated Xeloda

Postby JB09 » Thu Nov 11, 2021 6:40 am

beach sunrise wrote:Markers all look good except IL8. It goes up and down for some reason. I have wondered if it does this because sometimes I walk the dogs before bloodwork. Idk. CEA has always been above normal. So, its anyones guess. I have scans every 3 months CAP CT, PET,MRI in intervals. Have a CAP CT, in a few weeks then MRI end of Feb. The CBC and CHEM markers are good. vWF went up once, knocked it down fast. Not a problem since. VEGf serum and plasma are in good range. CD4 helper is low. Got to try to address that one more. There are many more and all in good range.
What are some of the nutrition parts Block recommends? I need to gain some weight.
I take a prebiotic blend in am, whey protein and plant based powder shakes, probiotic then a post biotic before bed to keep butyrate level good..


Diet is a HUGE part of his protocol. One of the most important pieces. The strict nature of diet goes hand in hand with any protocol. My husband went from high volumes of meat, including poultry, and weekend alcohol indulging, to strict vegan without a sip of alcohol, the day we enlisted Block. Our results have exceeded my expectations. Not due to methods and protocol, but due to the rapid pace at which his LB's showed wild type copies of BRAF and KRAS (although he was always wild type for KRAS-BRAF, when resisting treatment typically gains KRAS). Also, his TP53 mutation wasn't even picked up as an amplification.

Block shares some pretty in depth info on his diet in his book Life Over Cancer. Have you read it?

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beach sunrise
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Re: Interested in chronomodulated Xeloda

Postby beach sunrise » Thu Nov 11, 2021 6:32 pm

Thanks for feedback. I read the book when first dx'd. I gained back weight but then lost it all again. Looking for a quick way but might not be possible. Someone mentioned lexapro really gives you an appetite but don't want to go that route. I added some high fat healthy foods.
Sounds like Block tries to attack from different directions which is good. But I have found everyone has their niche and are not experts in everything so good you are doing extra homework.
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"

JB09
Posts: 19
Joined: Sun Nov 07, 2021 6:21 pm
Facebook Username: Jaime Baskin

Re: Interested in chronomodulated Xeloda

Postby JB09 » Fri Nov 12, 2021 6:19 am

beach sunrise wrote:Thanks for feedback. I read the book when first dx'd. I gained back weight but then lost it all again. Looking for a quick way but might not be possible. Someone mentioned lexapro really gives you an appetite but don't want to go that route. I added some high fat healthy foods.
Sounds like Block tries to attack from different directions which is good. But I have found everyone has their niche and are not experts in everything so good you are doing extra homework.


I think you nailed it in that last sentence. I am very connected to many communities of patients at a stage 4 who have either cured or successfully treated their cancer as it's a chronic disease they have controlled, however, most are pancreatic cancer patients. My personal take is "trust no one, learn from everyone and enlist a team of people and doctors around you who align with your same beliefs. Truly, the proof is in the results. Dr. Block is no doubt a genius, and at times we debate our ideas on treatment, but he's a piece of our puzzle, a big one, as I need his expertise and access to treatments. I'm actually very interested in personalized vaccines. We did a consult with Dr. Dreves a few months ago. Dr. Dreves is with Unifontis in Germany. He was a partner with Kleef. He does some mind blowing stuff, BUT, the price tag is something most of us cannot handle. NEO7 is in the US and does much of the same, although I have yet to see their results.


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