Newly Diagnosed- Stage IV

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rnb828
Posts: 3
Joined: Sun Oct 16, 2022 11:52 am

Newly Diagnosed- Stage IV

Postby rnb828 » Sun Dec 18, 2022 2:32 pm

I have been reading many of the posts on this forum for the last 2 months, and have learned so much. My husband (42 year old) was diagnosed in August with Stage IV colon cancer, originating in his sigmoid colon. He is a very healthy, active person with no underlying health issues, so the diagnosis came as quite a shock. His only symptom was constipation, which he had for a couple weeks prior to diagnosis.

We are receiving treatment at University of MI, and we also consulted with Cleveland Clinic for a second opinion. He has 6 liver mets, and we’ve been told they are operable (the 2 largest were 5 cm and 3 cm, rest are ~1 cm). He has completed 7 rounds of FOLFOX w/ Avastin, and will be doing 2 more before his next set of scans, and then a review by the tumor board.

His first set of scans did show shrinkage in his primary tumor, and the liver mets. His CEA started at 65, and is now at 15, so Chemo appears to be working.

However, he also has lymph node mets, which is where the complication comes in. Our oncologist advised that surgery is unlikely to be curative because of these lymph node mets, though they can be treated with chemo and maybe radiation. Below is the notes from the PET scan regarding the LN that are involved:

Hypermetabolic borderline enlarged lymph nodes at the aortic bifurcation and lower para-aortic region; the largest hypermetabolic right para-aortic lymph node at the level of L4 measures 1 cm with SUV max of 4.6.

I am looking for any advice/recommendations. From reading through some posts, it does appear that some have had successful surgeries to remove lymph node mets. Obviously we are hopeful for a curative treatment, but we are also realistic, and know this will likely need to be managed as a chronic illness. Since we are still relatively early in the process, we want to do whatever we can to give him the best chance. We just welcomed our first child in November, and are hopeful that he can beat/manage this.

Thank you for any help/insight you can provide!
Wife of Dx 8/2022 (42 yr old)
Stage IV- Liver/LN Mets
MSS/KRAS G12A
Began FOLFOX w/Avastin 9/22

rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly Diagnosed- Stage IV

Postby rp1954 » Sun Dec 18, 2022 6:12 pm

Be sure what conditions that they'll operate on the liver mets and/or lymph nodes, with both present initially.
Otherwise you get an unnecessary chemo vacation if they balk before surgery, that loses ground more quickly to mets and progression.

Normally they don't operate with multisite mets but sometimes advanced centers/clinics will do multimodal treatments.

In my eyes, the trick is to get (chrono modulated immuno) chemo with a higher therapeutic index, continuously to stop the spread, and multiple surgeries for locally curative results until the major cancer sites are eliminated, with chemo/chemistry to clean up as needed.

Here, "higher therapeutic index" means more cancer control per unit of patient damage to organs and blood panels, requiring milder side effect drugs, higher potency nutraceuticals, better inflammation control, and better immune modulation.

The level of combined skills required climbs with surgical requirements, like liver, or lymph nodes higher up the aortic plumbing or direct involvement with the aorta. Something that balks most surgeons may be no big deal to the right surgical team. However, a mere yes is not enough either.

Likewise, continuous chemo's requirements are going to climb with degree of metastasis.
The continuous chemo that you see most discussed here are ADAPT (daily xeloda + celecoxib) in some published papers, and "ADAPT+++", more of a personalized, coordinated homebrew with medical consultants that extends ADAPT far beyond single tests and doctors.

What your husband is doing right now might be called induction treatment. Cumulative damage will likely force the Folfox dosages down sooner than later until Folfox or a critical body part stops working. In my eyes, patients need to transition to milder continuous chemo and surgery before they get too beat up by std chemo plans.

You and your doctors need more data to better predict what NCCN treatment path(s) might apply.
Likewise, you need better data for additional opportunities beyond NCCN guidelines.
Advanced cancer takes preparation and planning to gather whatever resources and use them most effectively.
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

rnb828
Posts: 3
Joined: Sun Oct 16, 2022 11:52 am

Re: Newly Diagnosed- Stage IV

Postby rnb828 » Sun Dec 18, 2022 7:11 pm

Rp1954, thank you so much for your very detailed reply. It is very helpful, and the type of advice I was looking for. I am very interested in the ADAPT/ADAPT +++ protocol, and your explanation and reasoning make a lot of sense. One of my biggest concerns is that a chemo break before/after surgery could result in further spread, so this approach seems very logical, as well as sustainable long-term.

Do you have any recommendations as to what additional testing/data needs to be obtained? Should we consult with an Integrative Medicine specialist on this? In your experience, have your oncologists supported this approach?

Thank you again for your help & insight. I’ve been reading through many of your posts, and have a great deal of respect for your knowledge and experience in this area.
Wife of Dx 8/2022 (42 yr old)
Stage IV- Liver/LN Mets
MSS/KRAS G12A
Began FOLFOX w/Avastin 9/22

Rock_Robster
Posts: 743
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Newly Diagnosed- Stage IV

Postby Rock_Robster » Sun Dec 18, 2022 10:18 pm

Hello, I have a bit of experience with this. Distant lymph nodes are hard, and indeed a lot of surgeons will baulk at them.

I had a liver resection with peri-aortic lymph node removal (lymphadenectomy). To be fair, the surgeon only thought it was one lymph node (celiac), but when they got in they found much more than expected so abandoned the liver resection and did the nodes instead (took 11 peri-aortic nodes, 5 tested positive). We followed up with SBRT radiation on the liver mets which seems to have done the job.

They were pretty clear that with the lymphatic involvement surgery was unlikely to be curative, but I wrote quite a long email to the surgeon explaining my understanding of risks and potential benefits (including citing research) which seemed to give him confidence that I was informed and to give it a shot. He is also a bit of a hot-shot, former transplant surgeon and head of a hepatobiliary practice - so you definitely need the right surgeon on the case. Fortunately he had the skills once he got in the to adapt to the task - basically ‘skinning’ the celiac artery and aorta (in his words).

I had a fairly quick lymphatic recurrence unfortunately which was causing pain, which we treated with a short course of SBRT radiation (5 day). Again this had a good effect almost immediately.

In short, I would recommend lots of opinions from the best liver surgeons you can access, and also a consultation with a radiation oncologist as an alternative.

I also agree with RP - if operable now I’d be reluctant to do much more than 4-6 cycles of oxaliplatin before liver surgery. That stuff is rough,

Best of luck.
40M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 > 2
Jun-22: 5
Sep: 10
Nov: 19
Dec/Jan-23: 17-19
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 Lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

rnb828
Posts: 3
Joined: Sun Oct 16, 2022 11:52 am

Re: Newly Diagnosed- Stage IV

Postby rnb828 » Mon Dec 19, 2022 12:51 pm

Rock_Robster wrote:Hello, I have a bit of experience with this. Distant lymph nodes are hard, and indeed a lot of surgeons will baulk at them.

I had a liver resection with peri-aortic lymph node removal (lymphadenectomy). To be fair, the surgeon only thought it was one lymph node (celiac), but when they got in they found much more than expected so abandoned the liver resection and did the nodes instead (took 11 peri-aortic nodes, 5 tested positive). We followed up with SBRT radiation on the liver mets which seems to have done the job.

They were pretty clear that with the lymphatic involvement surgery was unlikely to be curative, but I wrote quite a long email to the surgeon explaining my understanding of risks and potential benefits (including citing research) which seemed to give him confidence that I was informed and to give it a shot. He is also a bit of a hot-shot, former transplant surgeon and head of a hepatobiliary practice - so you definitely need the right surgeon on the case. Fortunately he had the skills once he got in the to adapt to the task - basically ‘skinning’ the celiac artery and aorta (in his words).

I had a fairly quick lymphatic recurrence unfortunately which was causing pain, which we treated with a short course of SBRT radiation (5 day). Again this had a good effect almost immediately.

In short, I would recommend lots of opinions from the best liver surgeons you can access, and also a consultation with a radiation oncologist as an alternative.

I also agree with RP - if operable now I’d be reluctant to do much more than 4-6 cycles of oxaliplatin before liver surgery. That stuff is rough,

Best of luck.


Thank you so much for sharing your experience, and for your advice. We had one meeting with a liver surgeon that was promising, but we will continue to get more opinions, as it is becoming apparent that our choice of surgeon is crucial. It’s also good to know that SBRT is a possibility for the LN mets.

The LN mets did not show up on the CT scan or MRI, only the PET scan we had done prior to chemo, so we are also anxious to see if they have had any response to the treatments so far. Have you heard of ones having success on distant LN with chemo alone, or is this rare?

This has been a lot to navigate & learn, so I appreciate the guidance and information on this forum. It has given me some hope, which we desperately need.
Wife of Dx 8/2022 (42 yr old)
Stage IV- Liver/LN Mets
MSS/KRAS G12A
Began FOLFOX w/Avastin 9/22

rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly Diagnosed- Stage IV

Postby rp1954 » Tue Dec 20, 2022 4:30 am

rnb828 wrote:Do you have any recommendations as to what additional testing/data needs to be obtained?

see my Initial Recommendations posts.

Should we consult with an Integrative Medicine specialist on this?

average is probably consulting several ND for supplements, use 1-2; an oncologists, and have 1-2 other MD, DO, PA, NP for other scrips and problems.
Many other practitioners don't want to fool with cancer patients, so it may be a pre-existing or personal relation, or a special consultation.
In our case, for continuous support, I had found a high scoring internal medicine MD and gerontologist that was interested in integrative medicine and often had terminal cancer patients. He was particularly supportive of our efforts even when we didn't fully agree, he would discuss his view and do a reasonable scrip request.

In your experience, have your oncologists supported this approach?nd experience in this area.

Starting in 2010, I have to admit medical oncologists were the last to support this approach. ADAPT was still mostly unknown and mostly not yet published.
I interviewed 6 oncologists for at least one solid hour each ( one 3 hr, one 2 hr), building answers from each interview, amongst many MDs.

In part there was a discrepancy because the first surgeon couldn't believe his eyes on my wife's immune response and my papers. He wasn't willing to address a complex situation around a normally R2 resection that might embarrass himself (further) . He had reversed himself once - he had immediately suggested radiation for cleanup at one of the completely necrosed sites), and then said "stage III" and that wasn't right. I was having problems with oncologists' credibility because they had no awareness of the research I quoted (sometimes, papers in hand) and sometimes outright unprofessional behavior. Also they were difficult to physically schedule, MIA, and they weren't willing to directly confront the surgeon's misstage and some cumulative incidents made them look....conflicted and greedy. In 2010, there was a lot less practical information on distant and para-aortic LN, even staging. So I was hung between oncologists' fatal IV and wanting to believe the surgeon's nominal stage III, but building an answer for both - I totally distrusted the oncologists by this time. Initial staging and independent assessment/prediction of stage probabilities were another aspect of my pursuit of independent markers.

So I stuck with the research, seven days a week, all day, and got my wife's scrips elsewhere.
Realizing that industrial strength approaches for crisis situations (b/millions) would be much different than ordinary clinical medicine, I looked for better conditioning and sampling for real time decisions with enhanced data sets. That was tougher, the clinicians didn't seem to know/share anything beyond the meager, old (2009-2010) guidelines, or the latest pharma dinner (my own eyes).

After a very successful second surgery in 2011, I asked our most prominent surgeon who knew everybody worth knowing in the best hospital system about an oncologist.
Me: "You know, I never found an oncologist we could work with last year, could you recommend 1-2?
Him: "You're doing fine"
So after various oncology interviews, before and after the 2nd surgery, we "simply" continued pursuit of "+++" with UFT-LV modulations. UFT-LV instead of Xeloda.

After another 2-3 years, I got worried about curative closure and went to an oncologist to arrange another KRAS test (2010 had new test teething problems).
He scoffed at the UFT, a cheap generic 5FU pill greatly misunderstood, and misapplied. KRAS from surgery #2 was a bust too, too marinated in 5FU.
But seeing him occasionally over the years, he grew to realize he didn't have any surviving patients like my wife, much less in good shape after months or years of chemo. So he's been interested, but we're done with chemo and even most monitoring with the pandemic ...
Last edited by rp1954 on Tue Dec 20, 2022 10:49 pm, edited 4 times in total.
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: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: Newly Diagnosed- Stage IV

Postby beach sunrise » Tue Dec 20, 2022 1:17 pm

It is a whole lot to navigate and learn for sure. Thia board and search going back a long way are invaluble for info you will not find anywhere else.
You have gotten great solid advice so far.
My eye opener to all of the cancer business was finding drs to agree with me to write rx's I knew I needed. It took a minute but found them. If you feel something would benefit then have your research papers in hand for the appt. I never had a dr to read them but it let them kmow I did my homework.
I do not have a medical onc. I decided an intergravitive was best for me. Took me about 2 months to find him as I was looking for an independent up to date researcher.
I also have 2 NDs. An MD for IVC and rx's here and there.
I have been stable for 3 yrs. The lung node that has been there all along that I kept telling surgeon I knew it was a granade but he does nothing until proven by scan. SOC. So, I have upped supplements to help fight spread at this point.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Newly Diagnosed- Stage IV

Postby nmorgen » Tue Dec 20, 2022 9:52 pm

Hi beachsunrise,

Do you have a list of the supplements and dosages that you use?
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly Diagnosed- Stage IV

Postby Jacques » Thu Dec 22, 2022 2:39 pm

nmorgen wrote:Hi beachsunrise,

Do you have a list of the supplements and dosages that you use?

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65805&p=513825#p513825

User avatar
beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: Newly Diagnosed- Stage IV

Postby beach sunrise » Thu Dec 22, 2022 2:51 pm

Sorry for not responding sooner. Haven't been on in a few days.
Thank you, Jacques. He gave you what I do as ADAPT+++. I also take beta glucan 1,3 1,6
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly Diagnosed- Stage IV

Postby rp1954 » Thu Dec 22, 2022 5:23 pm

Chronomodulated xeloda could be an important aspect of ADAPT+++ (ADAPT++++?), to deliver more chemo, better.

Chronomodulation also allows higher daily doses, taken in 2-3 unequal doses, aimed for more cancer inhibitory timing.
The best +'s combined allow xeloda doses that ordinary oncology simply cannot achieve, with fewer side effects, to achieve different levels of cancer inhibition.

ADAPT/ADAPT+++(+) patients may fail regular chemo but improve their CEA and stability for years.

In my wife's case, chemo +++, mostly 3x a day, allowed her to digest, erode, burn out micromets and various lesions over the years, and to greatly lower the risk of metastasis from surgery. She started a mild chronomodulation later in her first year, after conventional chemo failure and toxicity, and we grew the +'s, mostly 2010-2012.
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: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: Newly Diagnosed- Stage IV

Postby beach sunrise » Fri Dec 23, 2022 11:34 am

Rp, I need to get back on chronomodulated. I tired it but it for a month but was beginning HFS I think? Weird foot sensations and hands began with some skin peeling. Never experienced that before so ya it freaked me out.
I"m thinking if I got extra fluids after IVC maybe it would be avaoidable?
To clarify chronomodulated for me. I was on it for a year or better. Stopped for a several months due to worrying about supply chain issues (didn't want to run low) and went back to B.I.D dosing. Went back on chronomodulated around July/Aug at a slightly higher dose adding 250mg-500mg and experienced the weird beginnings of HFS I think. Never had it before so not sure but pretty sure.
I am back on it now with a different plan for hands and feet so I don't have a repeat of possible HFS.

I hope this more detailed explaination of my plan makes sense this time.
I need to keep better records for sure.
Last edited by beach sunrise on Mon Jan 09, 2023 1:57 pm, edited 2 times in total.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly Diagnosed- Stage IV

Postby rp1954 » Fri Dec 23, 2022 5:46 pm

beach sunrise wrote:Rp, I need to get back on chronomodulated. I tired it but it for a month but was beginning HFS I think? Weird foot sensations and hands began with some skin peeling. Never experienced that before so ya it freaked me out.

You're plowing though the HFS grades and need to start sooner.
https://www.oncology.tv/symptommanageme ... drome.aspx

If my wife hit grade 1 anything, we started changes immediately. Approaching grade 2 stomatitis, her worst side effect, which took longer for finding the folic acid toxicity and working out the natural folate and other nutritional answers, we were forced to cut dose, missing crucial hours in a day, temporarily which lead to LN growth e.g. 4-6 mm --> 20 mm. Ultimately we were able to increase dose to new highs, and remove the hot cluster of LN surgically.
.
You need to talk to your drs, perhaps multiple drs, about their recovery choices/experiences although they are typically unfamiliar with the IVC+nutrient xeloda benefits you've had. Maybe an oncology ND, or Riordan will have IVC xeloda insights.
1. No HFS experience here, tegafur was more platelets, RBC, WBC limited for us.
2. I'm unclear from this "beginning HFS" sentence about how many months and doses, vs last 2 years.
3. It's very important to note and track timing on changes of doses and symptoms somewhere, somehow especially skips and delays. If possible you want to know whether you're dealing with temporary change problems or cumulative problems. If my wife left things out, blood work could change a lot in several panels.
4. Doing my wife's stuff, I put notes and blood values on spread sheet, charting is best. Helps deal with drs too.
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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