Please help! In search of answers

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Beza1422
Posts: 16
Joined: Wed Apr 21, 2021 2:45 am

Re: Please help! In search of answers

Postby Beza1422 » Sat May 08, 2021 8:54 pm

Thank you so much!!! I am looking into this now!! I appreciate your help and any and all insight and experiences as it is definitely help my search of where to go from here. I am just so overwhelmed and don’t know where to start as every second counts and I want to make the right and best decision. I appreciate this information, thank you again!!

beach sunrise wrote:Also, not sure what its all about but some use "Care Oncology" for support. Maybe others will let you know more about it.
DX 2/19: Mid-rectum adenocarcinoma, moderately differentiated
KRAS G12D ( p.Gly12ASP), MSS
4/19-5/19: Neoadjuvant Xeloda and Radiation
7/19: Low anterior Resection with end colostomy
4/21: CEA 74, two hyper metabolic left supraclavicular lymph nodes confirming adenocarcinoma at biopsy, focal activity at pelvic lymph nodes and a 0.9 cm lesion in mesentary/small bowel

Beza1422
Posts: 16
Joined: Wed Apr 21, 2021 2:45 am

Re: Please help! In search of answers

Postby Beza1422 » Sat May 08, 2021 10:11 pm

Thank you SO much!! I am just so happy that your research and consistence translates into such a happy and wonderful outcome for your wife! You guys have truly fought a hard battle and it’s so great to hear it came with a successful outcome!!
Thank you so much again for all of your info and insight and help on how to approach next steps. I am completely lost and am taking each and every word you have given me and trying to build on next steps for my mom! I found a lab we were able to order CA19-9 on our own with help from this forum because her doctors said that’s not a lab they follow or order. It is so upsetting that we have had such pushback and zero options from her current oncologist at cleveland clinic so will be getting a second opinion. With the mesentary/small bowel being the only “confirmed” lesion outside of lymph node involvement, I am just not sure if we should switch to an abdominal oncologist instead of a rectal oncologist specialist. We are still in search of finding a Naturopathic oncologist who will work closely with her and study her bloodwork and provide recommendations. We are willing to pay or travel or whatever we can do to receive the best care. Thank you so much again for all your help!! I have been taking each and every recommendation this far that you have provided and am trying to piece together a plan for next steps for a treatment plan, orders we need to order, searching clinical trials, etc.
I’ve been looking into clinical trials and not sure if this is the option we should pursue. I found this one clinical trial and am trying to find more data or any outcomes or any details or results of this being used previously at any time. I feel so pressured because I know out next step is the biggest and just don’t know what to do. This is the clinical trial I have been considering contacting. Thank you so much again for all your helpful information, recommendations and info! It’s truly appreciated and valued!

https://clinicaltrials.gov/ct2/show/NCT04491955

rp1954 wrote:1. We stopped spread and most growth with modified Japanese immunochemo and ADAPT approaches with lots of alternative extras early on, with a lot of effort on targets and trials to identify good components and dosages specific for my wife.
2. Then we were able to get surgery when several mets reached ~2cm and were trying to breakout (extracapsular penetrations with fine root-like extensions). Normally various drs figured she was done for when they saw the initial spread early on but didn't say so too loudly to us. Doing extra everything continuously she contained her mets for a year, until the second surgery. The trick is to find a surgeon with the proven ability for the particular surgical task, the inclination AND stroke to get it done. Most wouldn't. Your mom's sites are bigger leagues.
3. My point of view is to do amped up mild chemo versions to stop cancer spread soonest and then chip out the worst chemo resistant sites surgically, if possible.
4. We found ADAPT+++ formulas for her, but that doesn't mean ADAPT (oral chemo + celecoxib) can be made to work everybody'. However even the basic ADAPT approach does have a lot of amazing cases including advanced spreads. ADAPT/ADAPT+++ probably needs extra skills and effort to maximize success.

One person on the forums did 7 surgeries, mostly repeats, finally doing the stuff to stop the spread on the 7th surgery...
The met record for successful surgery(s) I've read of, is about 100 mets.
The problem is that the "pros" are stuck about any idea of stopping new mets with mild off label formulas AND doing multiple surgeries (inoperable) because they "know" it can't possibly work. Also they need to protect themselves from criticism and lawsuits.

The longer you don't do a **successful** chemical formula, the harder it gets for true NED.
DIfferent patients have different situations as to what any given data can do for them, but without more data, you don't get meaningful choices.
Constraining (y)our data set to some average or below yokel's view, didn't make sense for us - we wanted to be ready for comparison with all research groups' papers if possible, precisely to not be cornered into average treatment (guidelines) with predetermined failures (and toxicity).

Sometimes conventional chemo may be best (e.g. simple PD1 inhibitors, when data show they can work on a clear target). Data, data, data...
DX 2/19: Mid-rectum adenocarcinoma, moderately differentiated
KRAS G12D ( p.Gly12ASP), MSS
4/19-5/19: Neoadjuvant Xeloda and Radiation
7/19: Low anterior Resection with end colostomy
4/21: CEA 74, two hyper metabolic left supraclavicular lymph nodes confirming adenocarcinoma at biopsy, focal activity at pelvic lymph nodes and a 0.9 cm lesion in mesentary/small bowel

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beach sunrise
Posts: 457
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help! In search of answers

Postby beach sunrise » Sat May 08, 2021 10:40 pm

The ND Dr. Belanger is easy to work with and thinks out of the box. He even orders bloodwork I feel I need even though he doesn't track it closely its more for my tracking/trending and so far insurance has paid for all bloodwork. Sometimes when I have a request he says "You are killing me over here." LOL He is very down to earth and a cancer survivor also.
He works long distance either by phone or zoom. Most labwork is done thru lab corp.
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"

Beza1422
Posts: 16
Joined: Wed Apr 21, 2021 2:45 am

Re: Please help! In search of answers

Postby Beza1422 » Sat May 08, 2021 11:10 pm

Oh this is wonderful!!!! This is exactly what I am looking for and need!! I will be calling him on Monday and trying to set up a next available consultation. It’s so hard to find a doctor that will work with you and agree to requests like that that they may not feel are essential or important. It’s also nice to work with someone who unfortunately has been in the position but can offer personal insight. Thank you so much for this!! This information is so helpful and I am calling first thing Monday to get an appointment for a consult for my mom!! I appreciate your help so much and am grateful for every recommendation!

quote="beach sunrise"]The ND Dr. Belanger is easy to work with and thinks out of the box. He even orders bloodwork I feel I need even though he doesn't track it closely its more for my tracking/trending and so far insurance has paid for all bloodwork. Sometimes when I have a request he says "You are killing me over here." LOL He is very down to earth and a cancer survivor also.
He works long distance either by phone or zoom. Most labwork is done thru lab corp.[/quote]
DX 2/19: Mid-rectum adenocarcinoma, moderately differentiated
KRAS G12D ( p.Gly12ASP), MSS
4/19-5/19: Neoadjuvant Xeloda and Radiation
7/19: Low anterior Resection with end colostomy
4/21: CEA 74, two hyper metabolic left supraclavicular lymph nodes confirming adenocarcinoma at biopsy, focal activity at pelvic lymph nodes and a 0.9 cm lesion in mesentary/small bowel

Beza1422
Posts: 16
Joined: Wed Apr 21, 2021 2:45 am

Re: Please help! In search of answers

Postby Beza1422 » Sun May 09, 2021 9:10 am

I had my mom’s tumor sent for additional testing and this is what we have found from the genetic profiling:

- NEGATIVE FOR HER2 OVEREXPRESSION
-No NTRK1, NTRK2 and NTRK3 gene fusions were detected in the submitted specimen
-KRAS - A sequence change: c.35G>A, (p.Gly12Asp) in exon 2 detected at approximately 16% allelic proportion (depth of coverage at change 7887)
-NRAS - No variant detected
-BRAF - No variant detected
-Mismatch repair (MMR) status: Proficient (microsatellite stable)
-MLH1: Normal
-PMS2: Normal
-MSH2: Normal
-MSH6: Normal

Has anyone had any similar tumor profiling or recommendations for treatment? I am trying to perform data research and look through endless threads to get information as to what treatment would be best for this tumor profiling or clinical trials that are available. Again, everyone on this forum has been a true blessing and so helpful and I appreciate each and every one of you taking the time to help. I am grateful beyond measure!! Thank you from the bottom of my heart as your suggestions and recommendations have been a platform for all my research! So any and all info is so greatly appreciated!
DX 2/19: Mid-rectum adenocarcinoma, moderately differentiated
KRAS G12D ( p.Gly12ASP), MSS
4/19-5/19: Neoadjuvant Xeloda and Radiation
7/19: Low anterior Resection with end colostomy
4/21: CEA 74, two hyper metabolic left supraclavicular lymph nodes confirming adenocarcinoma at biopsy, focal activity at pelvic lymph nodes and a 0.9 cm lesion in mesentary/small bowel

catstaff
Posts: 85
Joined: Wed Mar 03, 2021 11:37 am

Re: Please help! In search of answers

Postby catstaff » Sun May 09, 2021 10:23 am

The genetic information you posted indicates KRAS G12D (glycine, the normal amino acid, substituted by aspartic acid at a particular location) in at least some of the cells. This is the most common KRAS mutation in colorectal and pancreatic cancer and some others. This is like my husband's; he is also negative for HER2 and the other common mutations you mentioned, as well as microsatellite proficient (MSS).

Your mother's spread is also very similar to my husband's. He had distal retroperitoneal lymph node involvement when he was diagnosed, so it's no surprise where his recurrence came from, but once it's in the lymph nodes at all it can spread through the lymphatic system. It is, however, not the most typical spread for colorectal cancer (it may be more common for rectal than for colon), which usually goes to the liver or lungs.

Once it's disseminated through the lymphatic system it is regarded as incurable because they can't remove the lymphatic system. Thus the conventional wisdom that surgery doesn't do any good, so chemo only. If the small tumor is causing hydronephrosis, though, I'm surprised they weren't amenable to it since they've indicated for my husband they'll take out isolated lymph nodes and such if they're "causing a problem" and that seems to be causing a problem in your mother's case. However, even removing all the known sites would not cure the cancer because you can be certain that it's distributed through the lymphatic system now.

He is currently about to start cycle 4 of FOLFIRI plus bevacizumab. His CEA has gone down quite a bit already, though we'll learn tomorrow whether the trend will continue. This combination can be pretty effective (knock wood) on small mets. This is the standard second-line treatment for metastatic colorectal cancer. Our oncologist is very open to clinical trials and we tried to get him into one before starting folfiri but he was rejected. However, we're going to see how long the folfiri works and whether they'll consider removing the recurrence in his low pelvis, especially if he's able to have his colostomy reversal so he'd be having surgery anyway. I don't get to talk to the oncologist much since I can't accompany my husband to the infusions still, but he'll have a CT in about a month and I will be there for that discussion one way or another. He is finding this chemo pretty tolerable so far, which matches with the experiences many participants here have said about themselves or their family member. It's been much better than FOLFOX (which was a failure anyway).

PD1 inhibitors don't work by themselves for MSS cancers except in fairly unusual cases of particularly high mutation burden, which doesn't sound like the case here. Hence the trials pairing them with various vaccines. The clinical trial you linked looked interesting but would probably work best if your mother's cancer cells were strong CEA secretors--does her CEA go up with the growth of the mets?
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Beza1422
Posts: 16
Joined: Wed Apr 21, 2021 2:45 am

Re: Please help! In search of answers

Postby Beza1422 » Tue May 11, 2021 3:50 pm

How was the report for his CEA? I sent a private message to you and would like to further discuss a few things if you have the time of some clinical trials that are pending and what your husband has tried if that would be ok? I’m also confused on the typing KRAS G12D vs G12A (which was on my mom’s report today)?

catstaff wrote:The genetic information you posted indicates KRAS G12D (glycine, the normal amino acid, substituted by aspartic acid at a particular location) in at least some of the cells. This is the most common KRAS mutation in colorectal and pancreatic cancer and some others. This is like my husband's; he is also negative for HER2 and the other common mutations you mentioned, as well as microsatellite proficient (MSS).

Your mother's spread is also very similar to my husband's. He had distal retroperitoneal lymph node involvement when he was diagnosed, so it's no surprise where his recurrence came from, but once it's in the lymph nodes at all it can spread through the lymphatic system. It is, however, not the most typical spread for colorectal cancer (it may be more common for rectal than for colon), which usually goes to the liver or lungs.

Once it's disseminated through the lymphatic system it is regarded as incurable because they can't remove the lymphatic system. Thus the conventional wisdom that surgery doesn't do any good, so chemo only. If the small tumor is causing hydronephrosis, though, I'm surprised they weren't amenable to it since they've indicated for my husband they'll take out isolated lymph nodes and such if they're "causing a problem" and that seems to be causing a problem in your mother's case. However, even removing all the known sites would not cure the cancer because you can be certain that it's distributed through the lymphatic system now.

He is currently about to start cycle 4 of FOLFIRI plus bevacizumab. His CEA has gone down quite a bit already, though we'll learn tomorrow whether the trend will continue. This combination can be pretty effective (knock wood) on small mets. This is the standard second-line treatment for metastatic colorectal cancer. Our oncologist is very open to clinical trials and we tried to get him into one before starting folfiri but he was rejected. However, we're going to see how long the folfiri works and whether they'll consider removing the recurrence in his low pelvis, especially if he's able to have his colostomy reversal so he'd be having surgery anyway. I don't get to talk to the oncologist much since I can't accompany my husband to the infusions still, but he'll have a CT in about a month and I will be there for that discussion one way or another. He is finding this chemo pretty tolerable so far, which matches with the experiences many participants here have said about themselves or their family member. It's been much better than FOLFOX (which was a failure anyway).

PD1 inhibitors don't work by themselves for MSS cancers except in fairly unusual cases of particularly high mutation burden, which doesn't sound like the case here. Hence the trials pairing them with various vaccines. The clinical trial you linked looked interesting but would probably work best if your mother's cancer cells were strong CEA secretors--does her CEA go up with the growth of the mets?
DX 2/19: Mid-rectum adenocarcinoma, moderately differentiated
KRAS G12D ( p.Gly12ASP), MSS
4/19-5/19: Neoadjuvant Xeloda and Radiation
7/19: Low anterior Resection with end colostomy
4/21: CEA 74, two hyper metabolic left supraclavicular lymph nodes confirming adenocarcinoma at biopsy, focal activity at pelvic lymph nodes and a 0.9 cm lesion in mesentary/small bowel

Beza1422
Posts: 16
Joined: Wed Apr 21, 2021 2:45 am

Re: Please help! In search of answers

Postby Beza1422 » Sun May 30, 2021 9:09 am

rp1954 are you located in the US? I was just curious where your wife received treatment because we have been to numerous oncologists who will not stray from conventional chemo protocols and schedules. We are completing bloodwork through RGCC this week to test for chemo sensitivity and working on a supplement protocol with Dr Belanger who was recommended from beach sunrise on this form (thank you!). We asked my mom’s oncologist about chronomodulated chemo and they didn’t even know what we were talking about. It’s very sad and upsetting the lack of individualized treatment options that are offered. We are still at a loss of how to proceed and do not want much more time to pass by before deciding. Thank you for your continued help and recommendations! I greatly appreciate it!! We even looked into Immunity Therapy Center but are concerned with the legitimacy and success rates of these unconventional treatments. Thank you so much again for any information you can offer!

rp1954 wrote:Sounds like your mom was not offered a compelling chemo and followup monitoring option, conventional or otherwise.
e.g. risk based biomarkers that highly predict who recurs without correct molecular treatments, no matter how unimpressive the molecule (cheap, lower toxicity, registered for other conditions), or more aggressive blood monitoring.

A compelling marker pair is the basis of adding cimetidine early on, for heavily CA199+CSLEX1 biomarked stage II/III patients, do it or die in the heavy marker cases despite an otherwise very favorable prognosis. CSLEX1 staining is not readily available in the US, but CA199 covers a lot of the probability.
This is one example of a possible treatment-marker/test pairing to add near initial diagnosis. I am not thinking cimetidine so much at this late date, especially w/o CA199 but if serum CA199 is high, in your shoes I might pursue the tissue stains in some circumstances, and CA199 has other implications.
There are many such pregnant possibilities with even less documentation - aspirin, celecoxib, PSK, vitamin C, D3, K2, flavonoids.

Your mom may be concerned of about treatment toxicity - conventional options are usually pretty intimidating.
We certainly were concerned about chemo but had the advantage of knowing after the first month, from surgical pathology, her supplemental package had worked. So we combined a mild daily chemo strategy added to the already demonstrated supplements and slowly tested more, based on papers or individual drs. The trick is to get enough immune and chemo activity without the big side effects for daily, long term use.

You need to be aware of overall options and that many non conventional options are not offered with full one stop shopping.
Or even offered at all, if decades have expired with their researcher. We parcel out our medical support and fill gaps at home.

Your mom's conventional options are probably:
Folfox + biological (Avastin or Erbitux/Vectibix);
Folfiri + biological (Avastin or Erbitux/Vectibix);
a Xeloda variant of the above;natural
or maybe, a PD1 inhibitor.

Patients often add some natural support during this time period, but may have tensions between their oncologist and their natural medicine support.
We had tissue work that suggested 5FU + the alternatives could actually beat oxi-, gem- or irinotecan combinations, as well as be used daily.

One somewhat popular mCRC/stage 4 option here that has no obvious major medical provider right now is ADAPT or "ADAPT+++",
(chronomodulated) UFT or Xeloda + celecoxib + aimed adjuncts/supplements

After 2+ years of daily chronomodulated UFT+cimetidine+aimed supplements, we did chronomodulated UFT + celecoxib + aimed supplements for years without the degradation and breakdown by normal chemo, precisely to stop circulatory and lymphatic spread. Your mom has much more serious lymphatic spread now than my wife and is harder to control. UFT is not approved in the US. Also the hydronephrosis is a complication that may or may not resolve with treatment.

Because of coxibs' noteriety I was reluctant about celecoxib until necessity favored it, and it worked but my wife also had episodes of hypercoagulability that had to be timely identified and dealt with, whether coxib related or not. Very definitely a skill - risk - benefit - QoL balance required there.

From my point of view, the best and quickest first estimate is post a CBC differential and a superchemistry (Chemo 20+++, LDH with CA199, more inflammation markers) up for discussion, fragility, and comparison. Incomplete bloodwork is a common problem that has to directly resolved by the patient, we can literally die waiting for agreement from insurance and drs.
DX 2/19: Mid-rectum adenocarcinoma, moderately differentiated
KRAS G12D ( p.Gly12ASP), MSS
4/19-5/19: Neoadjuvant Xeloda and Radiation
7/19: Low anterior Resection with end colostomy
4/21: CEA 74, two hyper metabolic left supraclavicular lymph nodes confirming adenocarcinoma at biopsy, focal activity at pelvic lymph nodes and a 0.9 cm lesion in mesentary/small bowel

rp1954
Posts: 1550
Joined: Mon Jun 13, 2011 1:13 am

Re: Please help! In search of answers

Postby rp1954 » Sun May 30, 2021 11:12 am

The literature will contain the basic application of the oral drug if the local talent can't handle it.

You have to have enough support to get the drug scrips and collective talent(s) to oversee the results and changes.
Basically whether the oversight on oral chemo is overbearing makes a big difference, and what kind of professional back up you need.

We were fortunate to have a fairly reliable drug source without too much hassle most years, but sometimes supplies dried up at inconvenient moments so we tended to stockpile 5FU prodrug. We never found a "regular" oncologist either - had to make do with our own homework, and other drs for various forms of support. The intensive blood test program was a big help staying ahead on dosing and adjuvants.
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

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beach sunrise
Posts: 457
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help! In search of answers

Postby beach sunrise » Sun May 30, 2021 3:24 pm

Dr. Belanger may know of an oncologist willing to work with your mom for cronomodulated chemo. I would ask him. Most onc's I have come to realize only follow SOC guideline for all patients and I get it, not enough time for individual care, lawsuits possibly, ect. Times have changed with high tech testing for personalized treatment, access to worldwide research and the doc's need to get up to date, JMO.
Surgeons most definitely stay up to date training worldwide for knowledge/skill so why can't medical oncologists? Or at least work with the one that has cancer and discuss other options, read the research presented and pow wow again for a better plan maybe.
Long story short: When discussing other options with my 1st onc he said with flared nostrils "I don't care what they are doing on the west coast, east coast, or timbuktu! This plan I presented to you is the only plan (no maintenance chemo and ct scans every 6mths). I talked him into xeloda by not accepting SOC plan or shutting up for almost an hour making him behind with his other patients and ran far far away in search of a new onc. My surgeon picked up the scanning protocol I believe I need and my new onc is on board with maintenance xeloda.
Be your own (your mom's) advocate!!! Find dr's who will listen and discuss.
To quote CRguy and rp both "You miss more by not looking....expand the bloodwork to look for trends."
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: 1550
Joined: Mon Jun 13, 2011 1:13 am

Re: Please help! In search of answers

Postby rp1954 » Tue Jun 01, 2021 4:30 am

Your mom needs to get rolling on some kind of chemo, the nature of lymph nodes is that they continue to spread and grow without treatment, then things totally stack up, and soon, fin. Blake's mainstream example
We invested our time and money for bloodwork, oral chemo and off labels from the first.

You're losing time and opportunities here because you post nothing to compare with on the labs that I mentioned. One size or type of treatment doesn't fit all in the alternative - experimental realm, there are several different directions to go. Much of the alternate chemo experience here is with metronomic (e.g. even, continuous doses) or chronomodulated oral 5FU chemo - UFT (Asia) or Xeloda (Western), plus other mild off label drugs and therapeutic levels of aimed supplements - not just some random weak tea pill(s).

The problem regular oncologists have with Xeloda (or IV 5FU/LV) alone is that, their Xeloda cycles alone aren't enough or optimal for mCRC. So they use oxilaplatin, irinotecan or in combination on top, plus a "biological" like Avastin or Ebritux.

However if a patient refuses the other "regular" adjuvants, oncologist may try to maximize the Xeloda dose as long as possible, especially with encouragement. Other mild adjuvants and strategies peek out at us without the oxi-iri-biologicals - ADAPT being the most common off label example used here. However celecoxib still may not be the right drug, or enough punch yet (hence ADAPT+++).

What some may do is to take that higher, -est Xeloda dose and use it at a chronomodulated dose to maximize cancer kill in the night and then prevent cancer stem cell cluster circulation or sprouting for the rest of the day, with less side effects. We used chronomodulated UFT which has different pharmacokinetics and schedule. But we absolutely had to use extra bloodwork to identify the other successful drugs and supplements of "+++" part, as well as celecoxib, and keep the chemo side effects well controlled.
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

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GrouseMan
Posts: 860
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Please help! In search of answers

Postby GrouseMan » Tue Jun 01, 2021 11:28 am

Beza1422 wrote:How was the report for his CEA? I sent a private message to you and would like to further discuss a few things if you have the time of some clinical trials that are pending and what your husband has tried if that would be ok? I’m also confused on the typing KRAS G12D vs G12A (which was on my mom’s report today)?


The single letter abbreviation for Asp (aspartic Acid) is D not A - A is Alanine. In your original post I saw you note it as Gly12Asp which is the same as G12D.

This can be confusing.

Good luck,
GrouseMan - former Medicinal Chemist that searched for Anticancer drugs.
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017


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