Please help! In search of answers

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

Please help! In search of answers

Postby Beza1422 » Thu May 06, 2021 1:55 pm

I am new here and researching on behalf of my mom. Two years ago she was diagnosed with stage III moderately differentiated adenocarcinoma. She was on Xeloda in addition to radiation prior to surgery. Underwent surgery 7/2019, where she opted for a colostomy in hopes that they would be able to remove the tumor and any surrounding lymph nodes effected. She declined post surgical chemotherapy. Now, two years later unfortunately her PETCT scan showed two 1.1cm hypermetabolic left supraclavicular lymph nodes, low level suv activity at the post surgical anatomical surgical site at the rectum, focal activity in pelvis (underwent pelvic ultrasound that showed no detection of lesions), hypermetabolic 0.9 cm focus in lower abdominal mesentary/small bowel (max SUV 7.2) at the level of ureters that’s causing hydronephrosis with additional lymph nodes in the aortocabal regions measuring 1.5 cm X 1.3 cm (max SUV 6.4)
CEA 70.4
Tumor immunochemistry: HER negative, NTRK 1,2,3 negative, normal expression for MLH1, PMS2, MSH2, MSH6, microsatellite stable.
I am in search of a good naturopath oncologist for supplementation options prior to chemo treatment and also any information or suggestions of where to go from here. FNAC of the left supraclavicular lymph nodes confirmed adenocarcinoma necrosis and I am just seeking any and all help as my mom is my world and I want to do everything and anything at any cost to help cure her! Thank you I’m advance for any and all help and recommendations or information!
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 » Thu May 06, 2021 3:04 pm

ND I have been with for almost a yr is Dr. Belanger and Mederi Center. Both have different approaches is why I use both.
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 » Thu May 06, 2021 5:00 pm

beach sunrise wrote:ND I have been with for almost a yr is Dr. Belanger and Mederi Center. Both have different approaches is why I use both.

Thank you SO SO much!!! I am beyond desperate for help and have no idea where to start or what to do! I appreciate your response so so much and any and all help!!
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

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

Re: Please help! In search of answers

Postby beach sunrise » Thu May 06, 2021 9:00 pm

lifeextension.org is where I started to get informed on cancer. It is very insightful.
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 » Thu May 06, 2021 9:26 pm

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.
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

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

Re: Please help! In search of answers

Postby Beza1422 » Thu May 06, 2021 10:14 pm

Rp1954, thank you SO much for taking the time to read, review and offer assistance! That means so unbelievably much. I just don’t understand because 6 months ago, she had a clear CT scan. We live in the US where CEA is standard over CA199, but I am definitely going to have her ask if this is an option. She would be willing to do non conventional treatments or be involved in a clinical trial as she is very hesitant to begin chemo due to side effects but at this point, we have no other choice and don’t know where to turn or what to do. I am just trying to find a direction to go as we as a family will sacrifice and do whatever and take her wherever necessary for hopeful outcomes. We also don’t have readily available naturopath oncologists or someone to help with a supplemental plan. We would be willing to travel or pay for remote services. I appreciate your time and help with this! You truly are a blessing to this forum!

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 option here that has no obvious major medical support right now is,
(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

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

Re: Please help! In search of answers

Postby beach sunrise » Fri May 07, 2021 9:13 am

Yes, what rp says about expanding bloodwork is very important. There are so many posts here about it. If you get resistance from the onc like I did just go out on your own, order the panels from life extension and study to learn how to read them (what they are for), pair them for other things that might be going on, look for trends good or bad. Research for answers to improve. A good ND or two plus an intergrative onc can help with all this.
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 » Fri May 07, 2021 9:26 am

Thank you so much! I am in the US and having a hard time finding information on life extension, the website I am getting is just supplements. Do you reside in the US? I am just trying to find someone close to work with to get these panels and supplements, even if we have to travel or could do online counseling. I appreciate your time and help so unbelievably much!! Thank you, thank you!!
beach sunrise wrote:Yes, what rp says about expanding bloodwork is very important. There are so many posts here about it. If you get resistance from the onc like I did just go out on your own, order the panels from life extension and study to learn how to read them (what they are for), pair them for other things that might be going on, look for trends good or bad. Research for answers to improve. A good ND or two plus an intergrative onc can help with all this.
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

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

Re: Please help! In search of answers

Postby GrouseMan » Fri May 07, 2021 9:59 am

My wife developed Hydronephrosis in last year prior to her passing. This was due to a tumor that was hard to visualize on CT scan growing in the peritoneum pressing on her Ureter. She had to have stents put in to keep it open. About every 4 weeks they needed to be switched out. This surfaced as back pain for the most part. In her last year she was plagued by lower back pain though no mets to her spine.

GrouseMan
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

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

Re: Please help! In search of answers

Postby Beza1422 » Fri May 07, 2021 10:21 am

Thank you for responding! My mom feels great which is also why this is all so hard to process and all her blood work and everything came back perfect. Another reason it’s hard to swallow that she has to compromise her system with chemo. Did they remove the tumor in the peritoneum? I appreciate this info as this is super helpful to help diagnose what is going on and hopefully be able to catch it before anything progresses. My concern is that chemo will not infiltrate the peritoneum/mesentary enough to pinpoint and target this 0.9cm tumor. I was hoping for surgery but they are refusing to do surgery and only giving her the option of conventional chemo

GrouseMan wrote:My wife developed Hydronephrosis in last year prior to her passing. This was due to a tumor that was hard to visualize on CT scan growing in the peritoneum pressing on her Ureter. She had to have stents put in to keep it open. About every 4 weeks they needed to be switched out. This surfaced as back pain for the most part. In her last year she was plagued by lower back pain though no mets to her spine.

GrouseMan
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

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

Re: Please help! In search of answers

Postby beach sunrise » Fri May 07, 2021 10:46 am

The main site, click on Science and Research, scroll to list and click cancer.
Take notes on suggestions, research on your own to see what fits best for your moms case.
For bloodwork, search for the panels needed, add to cart.
It's a good starting point until you can get a good team together to help your mom thru chemo.
Both of my ND's, intergrative onc and radiologist are remote long distance and it works just fine.
The only cancer specialist I have local is my crc surgeon who I love, top of his game, brilliant!
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"

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

Re: Please help! In search of answers

Postby GrouseMan » Fri May 07, 2021 12:21 pm

Beza1422 wrote: Did they remove the tumor in the peritoneum? I appreciate this info as this is super helpful to help diagnose what is going on and hopefully be able to catch it before anything progresses. My concern is that chemo will not infiltrate the peritoneum/mesentary enough to pinpoint and target this 0.9cm tumor. I was hoping for surgery but they are refusing to do surgery and only giving her the option of conventional chemo


My wife felt pretty good up until the final 6 months. She handled Chemo very well. In fact worked while on Chemo. As for Surgery - She was not a candidate. The Peri Met was encircling her colon from the outside. What got her is that it blocked or squeezed her colon at the end in such a way that she was throwing up Bile at the time she went into the hospital for the last time. They tried a Colostomy to relive/bypass where it was pinching her colon but that didn't work. Finally had to put a tube in her stomach, but by that time she was not getting any real nutrition and started to waste away at home under home hospice. I can tell you not something I want to watch happen again. Once cancer is in the peritoneum/mesentary its very hard to treat.

GrouseMan
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

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

Re: Please help! In search of answers

Postby Beza1422 » Fri May 07, 2021 1:06 pm

I am so sorry all that you, your wife and family had to go through. This is all so heartbreaking and I have literally stayed up all night for the last few weeks just endlessly searching for answers and where to turn or where to go because we need to make crucial decisions and advocate but I want to make sure they’re the right ones. My mom currently has a colostomy and had a clear colonoscopy today, no cancer detected or abnormalities there and they biopsied the rectal stump and awaiting those results. I just have no idea how it spread to the mesentary and supraclavicular nodes and not any other organs, just lymph node involvement possibly around the mesentary, this just does not seem like the usual course of metastasis and I am wondering if it’s seeding from the surgery or just lymph node involvement and spread. I am trying to push for surgery now prior to chemo to remove the small mass in the mesentary but no doctor wants to take that course of action. I just don’t know the best course of action for treatment of the mesentary/small bowel but I feel like surgery would be our best option for the best outcome it just seems like no doctor will buy into that ;( I appreciate your time and help with this! Your experience and insight is helping me try to uncover and figure out options. Any and all info or recommendations you have is so greatly appreciated!! My email is ezarik.Breanne@gmail.com. if that’s easier as well. Thank you so so so much for your time from the bottom of my heart!!!

GrouseMan wrote:
Beza1422 wrote: Did they remove the tumor in the peritoneum? I appreciate this info as this is super helpful to help diagnose what is going on and hopefully be able to catch it before anything progresses. My concern is that chemo will not infiltrate the peritoneum/mesentary enough to pinpoint and target this 0.9cm tumor. I was hoping for surgery but they are refusing to do surgery and only giving her the option of conventional chemo


My wife felt pretty good up until the final 6 months. She handled Chemo very well. In fact worked while on Chemo. As for Surgery - She was not a candidate. The Peri Met was encircling her colon from the outside. What got her is that it blocked or squeezed her colon at the end in such a way that she was throwing up Bile at the time she went into the hospital for the last time. They tried a Colostomy to relive/bypass where it was pinching her colon but that didn't work. Finally had to put a tube in her stomach, but by that time she was not getting any real nutrition and started to waste away at home under home hospice. I can tell you not something I want to watch happen again. Once cancer is in the peritoneum/mesentary its very hard to treat.

GrouseMan
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 » Fri May 07, 2021 10:28 pm

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...
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

User avatar
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 9:56 am

Also, not sure what its all about but some use "Care Oncology" for support. Maybe others will let you know more about it.
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"


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