The Colon Club

I've just registered on this forum and hoping I can get some help/advise on our situation.

My husband just got diagnosed with Stage 4 Colorectral cancer last month. Its Stage 4 with only lymph node involvement, but its extensive lymph nodes involvement, it involves cervical, supraclaviscular, paratracheal, prevascular, aortopulmonary window, superior and anterior mediastinal, paraoesophageal, retroperitoneal lymph nodes etc. Basically it goes from cervical to chest, abdominal and pelvis.

We have done our biomarkers:
- poorly differentiated adenocarcinoma
- MSS, tumor burden is 2.1
- KRAS, BRAF, NRAS all Wild
- RAD51B, TP53, APC, ZNF217
Base on the above, there is no immunotherapy available. Our oncologist suggested to go with Folfoxiri+Avastin and see.

I've done a bit of research, read many people's post, got 2nd opinion and know this is not a great situation, I'm completely heartbroken.

It took me a bit of courage to write this post because I know people will tell me this is not great, but I was hoping that the there will be people with similar symptom(ie: Stage 4 with just lymph node involvement which is rare), that can shed some or any light on what their experience is. Is there anything that I can do that will help it in anyway, whether its vitamin's, or any better oncologist that we should fly to, or ANYTHING?

Thank you so much again and appreciate the support from anyone

While I didn’t have lymph node involvement, I DID have tumors so large that I could feel my liver protruding beneath my rib prior to diagnosis. A scan revealed it was 80% tumor, and the first four oncologists all gave me 1-2 years to live.

I started working with a fifth, who said anything was possible and started me on FOLFOX + Vectibix. That treatment got me to my first resections and NED status.

So you just don’t know what kind of response he will have. I’m 3 years from diagnosis and NED for the 3rd time.

If you do have the means, MSK is exceptional with difficult cases. I started at Northwestern, then began working with them after my 7th chemo treatment. From there they coordinated my care. At minimum you want treatment at an NCI facility, but personally I think a consult at MSK would be worthwhile.

The more information you post, the more people can compare with you on specifics, looking for broader options.

Can you list the sizes of the LN ? Our belief (and experience) is that LN may be beneficially operable in some circumstances beyond the guidelines, as well as sizing up the nodes for chemical treatment.

If you want more options and commentary, I would suggest you get and post the following blood data.
CEA, CA199, ALP, LDH, with hsCRP and ESR, GGT, 25 hydroxy vitamin D, cerruloplasin, ferritin, AFP, D-dimer, HgbA1C, the entire CBC, and maybe CA125.

Almost certainly, you will have to order some of these blood panels yourself. You will be wasting valuable time whatever panels the first dr won't order on the first request. People often get stuck on "my doctor knows best", begging for cooperation on an order, or whether insurance will pay. If so, then you've effectively already made the standard choices, or maybe a clumsy attempt to "alternative"/experimental going nowhere.

Basically any advanced CRC patient struggles to find a chemo that works for them and you are dealing with a narrow window of opportunity. Most simply take their chances with the quidelines or their oncologist. Some choose to go beyond to try to gain benefits in cancer inhibition, mutimodal treatments, and improved quality of life, but it takes an aggressive discipline to drive a more successful attempt.

Try to stay strong and know that everyone’s story is their own. You could perhaps look into Care Oncology to pair with chemo? Trying to stay present always helps me think through things and research when I need to make treatment choices.

I agree with RP1954 that you should get all your blood markers done. Some doctors have argued with me but they always run the blood tests I request or you can make an order through Life Extension (a medical/supplement company).

And screw anyone that’s super negative and makes you feel bad, neither of you need that. Find a positive talented doc…. It’s worth it and they exist.
Wishing you calm in this storm

susanCT1 wrote:I've just registered on this forum and hoping I can get some help/advise on our situation.

My husband just got diagnosed with Stage 4 Colorectral cancer last month. Its Stage 4 with only lymph node involvement, but its extensive lymph nodes involvement, it involves paratracheal, prevascular, aortopulmonary window, superior and anterior mediastinal, and paraoesophageal lymph nodes. Basically it goes from cervical to chest, abdominal and pelvis....
...
Thank you so much again and appreciate the support from anyone

There is a group of patients who call themselves "Olymphians" or "Olympians". They are the ones with involvement only in the remote lymph nodes.

You can read about them and their treatment plans in some of the posts here:



Olymphians

Also, it would be good if you could take the time to create a detailed signature, because the more information that's available on your DH's medical situation, diagnosis, staging, surgeries and treatments completed so far, etc., the better prepared we will be to determine if we have any relevant information to share.

The detailed information should be in the signature itself, not scattered among isolated posts, because the signature can be seen at the bottom of all of your future posts.

How to create a signature

viewtopic.php?f=1&t=52681&p=421597#p421597

=======================
Thank you for creating a signature. This should help clarify the situation.

Your signature doesn't mention surgery, however, so I assume that the oncologist decided to start with the aggressive Folfoxiri+Avastin regimen first to see if the lymph node involvement could be stabilized or reduced before attempting any surgery. Is this correct?

Your signature doesn't mention specifically which part of the left-side the tumor is in.  Is it in the rectum, or is it in the descending / sigmoid colon area?

You have mentioned 4 different biomarkers. Has your oncologist explained the implications of mutations to these 4 genes/proteins?  If so, what did he say?

======
You are still at the level of Newly Registered User with only 3 posts. You can be upgraded to status of Registered User with more privileges if you post a few more messages.

I agree with rp1954. Get the expanded bloodwork. Bloodwork can tell you things going on so you can get the jump on out of level markers before a scan tells you that you have problems. Research ND's also. A good one can be very valuable to your husbands case. Dr. Belanger goes deep on a molecular level agressively.

I’m sorry to hear about your husband’s diagnosis. Others will give advice on the particulars that you related, but I want to let you know that colon cancer is a very heterogeneous disease. Meaning each persons experience with the same or similar set of facts will have a different outcomes. There are so many variables to consider when looking at the prognosis for a given set of facts. Take a breath, stay optimistic, stay off the internet get a second opinion and ultimately trust your doctors. One piece of advice, I see someone else recommended MSK and I wholeheartedly agree. I am being treated there and count myself to be very luck to have access to such a remarkable institution, I can’t recommend them enough. If you live far from NYC I believe they will do a long distance consult. Good luck!

I'll call up MSK for a 2nd opinion on Monday. I went to Northwestern and they mentioned they can't get rid of it completely.
Reading the olymphian's thread make me depressed that since what they went thru 10 years ago, there has been is no medical advancement, its the same few chemo.

@rp1954, regarding the LN size, I was trying to upload a snapshot of the PET scan but seems this board doesnt allow. I'm not sure how to convert SUV to cm, but some of the SUV are below, most are in 3-5 range with the exception of 1 below
- right paratracheal lymphadenophy with a max suv of 6.6
- prevascular lymph node with a max suv of 5.5
- aortopulmonary window lymphadenopathy suv 4.3
- paraesophagael lymph nodes suv 3.4
- pericolic lymph nodes along the distal sigmoid colon with the largest maxx 3.2x2.2cm and suv 4.5
- hypermetabolic uptake within wall thickening distal signoid coloin with max suv of 7.4 compatible with patients known colon carcinoma

Regarding the blood works you mentioned, the only one my oncologist ordered is CEA and CBC(our baseline CEA was 945 and after one chemo cycle it went up to 1008). I won't try to pretend that i know what some of your list means. But if i just give my doctor your list and make him order it, would he know what to do? Or do you recommend that I just order this package from LifeScience myself? Does it cover all the test you mentioned?
https://www.lifeextension.com/lab-testi ... blood-test
Is this same as Signatera test? I plan to order that as well.

Seems I dont have power to private message people until i post more.

@beach sunrise, what is ND? Which Dr. Belanger is it? thanks

@O Stoma Mia, they are starting chemo to shrink it to see if a surgery can be done. Though both Northwestern & City of Hope mentioned they can't get rid of the lymph nodes as its spread out. The tumor is left side sigmoid colon area.
The 4 markers (RAD51B, TP53, APC, ZNF217) according to the oncologist are not significant, meaning it doesnt give me any extra option or anything. Though i did see RAD51B has a parp inhibitor as an option on our tempus report, it seems parp inhibitor has not proven to be very effective in colorectal cancer.

ND = Naturalpathic doctor. Dr. James Belanger. He knows his stuff.
Research celebrex for APC mutation. He would be a good candidtate for generic celebrex as it suppresses APC
For TP53, its a mutation of p53 that catalyzes cancer cells to proliferation. I take a few supplements to combat it.
These are important mutations that need to be addressed in my opinion. No experience with the other two. Do your homwork and bomb them.
Your onc only knows chemo and that's it based on what you posted. Expanding resources is really a good idea. Cancer is what it is and no one knows everything so you need more expertise on top of Standard of Care (SOC). Advocate Advocate
I have 5-7 different dr's I use, each with their own expertise to help me not progress.

mm data are direct measurements on the nodes, a few seconds per "shot" about like a game video. Size may be more important than SUV, so a better list is advisable. Each consulting center that looks directly at the CT images can do it very fast, I've listened while the radiologist did it. Just need to record the sizes.

Yes, just take the blood data if they won't do it. Often they have not specialized in CRC enough to know what different combinations of "normal" panels are likely to mean based on various literature. One of the problems in medicine is parochialism, e.g. "if it's not on my list, it's not important". Don't let them short change your data, this early data is a biggie.

Your husband should already have several CBC results, especially the one at diagnosis. Since you are probably not too familiar with blood tests (yet), you might have the nurse help go through your records which ones you have, or just read the list to the order person if money is not too tight. There is a lot of data repetition to monitor change anyway. Time is a priority right now.

Barring a "silver bullet" treatment, either with Keytruda where applicable, or Sleen's magic WBC case, the options are conventional chemo mostly until failure OR chronomodulated immunochemo with more upside potential for surgery (the drs don't understand this yet, but what we did).

"chronomodulated immunochemo" would mean combining 2-3 oral treatment technology protocols into a newer version for maximum punch and durability, and closer in to surgery. It's premise is that the continuous treatment has benefit to stop spread and enough punch to stop most exisiting mets' growth or even shrink stuff. Our bottom line was surgery for the worst ones that are not stopped (e.g. episodes of inadequate tx), hence a multimodal approach.

What's changed in 10 years are better chemistry choices to extend the ADAPT protocol, and "translation" of chromomodulation into a Xeloda version as well as UFT. Basically chronomodulation appears to make it possible to do up to 10% more Xeloda than the European dose, which is 20% higher than the American Xeloda dose, and even higher at the day's peak dose, comfortably.

The next trick is to chemically manipulate the cancer cell impact higher with less side effects. e.g. We, and oncs, are used to seeing patients with bodies damaged by long term chemo. So when they would see my wife, looking good, they would ask how many months since she was on chemo. Her answer "this morning"...

My wife's chronomodulated immunochemo was based on Japanese literature for oral 5FU and UFT, another 5FU drug, and to a degree, other Western supplement technologies.

The american literature has the ADAPT protocol but stops way short of optimizing it or incorporating many other lessons like we did, including chronomodulation. Nevertheless, even just the original ADAPT protocol had a lot of stage IV home runs.

Hello,
Sorry to hear about your husband. Everyone is different but here is my story for what its worth...

I had extensive lymph node spread up to the para-aortic at diagnosis (now in my mediastinum). Folfox+Bevicuzimab chemotherapy was effective for me. After six months I went on maintenance chemo. I had a extensive lymph node dissection last year but it wasn't successful in removing all the cancerous lymph nodes. I'm still here 4 1/2 years later and still doing chemo (capecitabine).

My boys were 3, 6 and 8 when I was first diagnosed.

You are early in your journey and there is every reason for hope.

AT

My husband is another with lymphatic spread. (He also has a bone met but that is frequently due to infiltration through lymph.) He has been on folfiri+bev (already failed folfox, hadn't tried folfoxiri, now we wish he had but it wasn't in the protocol they were following). Folfiri+bev got him to a point that seems to be stable so far. He is not NED but that's difficult to achieve with a bone met through chemo alone. His CEA started falling after his first treatment but the onc said sometimes it rises for a few cycles before falling.

His initial diagnosis was similar to Achilles Torn's. Spread to para-aortic which was irradiated. Recurrence about a year later up to a couple of gastrohepatic nodes. His primary was also G3 (poorly differentiated).

The current plan is for him to stay on folfiri at a lower maintenance level. 5FU+bev may not work for him due to KRAS mutation, but your husband is wild type KRAS so it may become an option, as it did for AT.

@susanCT1 -

In my opinion, it would be worthwhile for you to try to understand rp1954's approach to do-it-yourself (DIY) treatment planning. This approach involves a personalized, ever-evolving, customized treatment plan based on an evidence-based synthesis of standard treatments with the addition of some complementary and alternative (CAM) treatment methods.

You can read about some of these approaches here:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65773&p=509908#p509908

And you can search rp1954's past posts by keyword by following the instructions here.

If the plans are for DH to have primary colon surgery eventually, then you might want to search rp1954's past posts for peri-operative use of CIMETIDINE, and CELEBREX/CELECOXIB for extra protection in and around the surgery period. When surgery is scheduled, there is usually a 5 or 6 week delay after surgery for re-starting chemo, and it is during this period of non-treatment that progression could occur, so if something extra can be done during this time so much the better. (Your oncologist may not be familiar with this because it is a non-standard approach to treatment.)

Your DH is currently on FOLFOXIRI+Avastin (bevacizumab). If that regimen eventually fails and another mCRC treatment regimen needs to be started, then there are only a few others on the list that DH would be qualified for, given the restrictions of his biomarker status.

Here is the list of current FDA-approved medications commonly used for colorectal cancer (2021).
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65284&p=507610#p507610
and here are rp1954's additions to the list
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61855&p=490865&hilit=uracil+tegafur+cimetidine+celecoxib#p490865

According to the NCCN Treatment Guidelines for Colon Cancer, if FOLFOXIRI+Avastin is chosen for 1st line mCRC treatment, then only a few options are left for KRAS/BRAF/NRAS wild tumors (see current Guideline for details). Here are the older 2017 guidelines below. See page 4 of 10 in section COL-C, for 2nd-line mCRC treatment options after 1st line FOLFOXIRI+bevacizumab(Avastin). This section is around page 34 of the 177 page document below:
https://www2.tri-kobe.org/nccn/guideline/colorectal/english/colon.pdf