The Colon Club

I'm very sorry to hear about your husband, Susan. My mom was recently diagnosed with colon cancer, so I'm relatively new to this. That said, unfortunately, I don't have much to add, but I did recently read a thread on reddit during my research that might be useful for you. There's a redditor in the colon cancer subreddit who has/had lymph mets along with liver mets, and they had 70 lymph nodes removed. This person (Galdin311) is apparently being treated at MSK, so you might have luck there as well. If you're on reddit, it wouldn't hurt to send them a message and ask about their experience.

This forum is a fantastic resource, and I've been very impressed by how many friendly, knowledgeable colon cancer communities there are online. If you're on Facebook, I highly recommend joining the Colontown groups, too. They have so much information, and there might be additional people there who've been in your husband's shoes and who might have hopeful advice and experiences to share.

Reading thru both @beach sunrise and @rp1954's comments, i initially did not fully understand since I was a little too focused on chemo options.

After digging thru and reading thru your past posts, and with @O Stoma Mia's summary post, I realized that what you suggest is a combination of Integrative medicine plus approved treatment from oversea.

I'm still reading thru rp1954's past post and trying to understand/digest them. But how do you implement this approach yourself and know you did it right? ie: how much to take so it works but doesn't damaging your liver etc? Im kinda trying to understand how to do this logistically. Some of them are prescription only such as CELECOXIB though i find generics online but are they of good quality? Or is the recommendation to just find a Integrative MD and hopefully they know?

Also @rp1954, your post mentioned a few times that we should try to keep it from metastasizing thru blood and lymph nodes, ours are in the lymph do you think these supplement will help in our situation? I know your wife had some para-aortic involvement but it seems to be removed by surgery? I have too many questions but I want to finish reading more of your post and understand it first.

@catstaff, I saw your post after i joined, and painfully read thru your comment while trying to keep my hopes still. Initially our oncologist wanted to use SOC Folfox+Avastin on us too, but we pushed him to go Folfoxiri+Avastin base on our research, its hard to know whats right.

It is alot to digest and so confusing at first. I get it, been there done that and still having to change protocols based on new blood data and scan results. It's a constant learning curve. It takes discipline to do the right things at the right time. Bloodwork is what I struggle with, being stuck all the time is no fun, ha. This week so far and its only Tues I have been stuck 3 times (2 times at hospital yesterday, today for IVC). Got to get stuck 2 more times this week (bloodwork tomorrow, IVC on Friday).
How you know you are dong things right is by bloodwork. It tells half the picture or more of what is going on. Then working with drs to combat out of range markers. There are very potent supplements that can help stop spread.
I get my celebrex simply thru a gp. I learned real quick if you say you need it as part of cancer protocol then discussion is over, appt done. SMH. I learned on the 3rd or 4th appt to just say its for pain and inflammation in my hip. Which is true. So, found out its a need to know basis for some things you need to combat cancer.
Chemo in my opinion should be the base of cancer treatment but does not have to be so heavy and poisonous to the body. JMO
My 1st onc was all about heavy chemo and I said NO. Talked him into xeloda after an hour of arguing my case and I ran as fast as I could. Found a great intergrative onc who is a constant researcher, very open minded to new things conventionial oncs can't or wont even try for your benefit or even look at the study papers. Sad!
Next I have a great ND, he is great and open minded as well. Love having discussions with him and learning.
I have another ND I use for his niche in TCM and homeopathic things.
So far, all my drs have their own protocols that I combine and has kept me from progressing for almost 2yrs now.
Advocate Advocate. Hunt for answers. Don't take NO for an answer.

The blood tests provide initial information and on going information both benefits and toxicity in realtime. We always aimed for low toxicity and took blood data frequently.

We worked with doctors to prescribe everything. Common, mild drugs are a lot different than normal chemo.
Most things are water soluble or carried by cells.

It's somewhat easier to optimize chronomodulated chemo before they burn up your excess neutrophils and platelets with regular chemo.

The first step is the blood data, and losing time with unfocused discussion.

susanCT1 wrote:....
Seems I dont have power to private message people until i post more.
...

It looks like they have just promoted you to Registered User status, so you should be able to send private messages (PMs) from now on.

beach sunrise wrote: Bloodwork is what I struggle with, being stuck all the time is no fun, ha.

This is actually a common symptom of too much interference like insurance or lack of coordination/cooperation of drs.
Blood draws were easy for us, one and done with home service; less frequently as we were cumulatively successful.

susanCT1 wrote:After digging thru and reading thru your past posts, and with @O Stoma Mia's summary post, I realized that what you suggest is a combination of Integrative medicine plus approved treatment from oversea.

Chemo was based on overseas treatments that succeeded in several ways more valuable to us, we simply moved it home for comfort and ease of use. We were dependent on UFT for chronomodulation, but that is no longer an issue for Xeloda.

But how do you implement this approach yourself and know you did it right? ie: how much to take so it works but doesn't damaging your liver etc?

prior examples, literature information, professional recs are the starting point for milder side effects and ongoing blood work allows you to dial in a personal fit with much lower toxicity. It is regular chemo that typically blows up your organs and blood work. Correct targeting is using a less toxic cocktail to do more, some of these are optimizations that conventional oncology couldn't be bothered with.

Im kinda trying to understand how to do this logistically. Some of them are prescription only

You need drs to write "friendly" large scrips for capecitabine (Xeloda) and the other drugs.
In an uncertain world, survival is sometimes not running out, like happens increasingly frequently. With cancer, a stockpile is survival and even other emergencies. Generic drugs make this easier financially.

@susanCT1 -

In your case, I think it would be very important to monitor the level of side effects while on chemo, especially side effects like diarrhea, nausea, mouth sores, and peripheral neuropathy. This is because unexpected severe side effects can cause the chemo regimen to be abruptly stopped or canceled if these effects escalate to level Grade 3 or Grade 4 -- and you would not want this to ever happen if you could possibly do something to prevent it, because you would want the regimen to be effective for the full course of its intended application and not be prematurely terminated.

The importance of this has already been mentioned briefly elsewhere:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65469&p=508608#p508608

Since there are not many fall-back treatment options if the FOLFOXIRI+Avastin regimen is ever stopped or fails to work, you would want to stay on this regimen for the full term or for as long as you can handle it, especially if it seems to be working to stabilize or reduce the mets. This means that DH will need to monitor his side effects very closely and report any unusual increases to the doctor immediately so that appropriate treatments or changes in regimen can be implemented as soon as possible in order to avoid an abrupt termination of the regimen.

Serious events usually cannot wait until the next scheduled meeting with the doctor; they need to be attended to as soon as they emerge, before they escalate out of control -- even if this is on the week-end when the infusion center is closed and the oncologist is out of the office. With this type of chemo, certain side effects can arise and escalate to a very serious level in just a matter of a few days -- like over the week-end. This is why you need to have 24hour/7day access to relevant medical help should you ever need it.

This is all the more important as more and more chemo rounds are completed, because there is a cumulative effect of toxicity that builds up over time and sometimes triggers an unexpected avalanche of side effects after so many rounds have been completed. You have to always be on the alert for the unexpected, and be prepared to react quickly.

The document below shows the full list of drug-related Adverse Reactions, for all kinds of drugs, sorted by category. (In this list, diarrhea is located on page 24. Other side effects can be found by locating the appropriate section in the Table of Contents. Diarrhea is used here just as an example. Other possible side effects follow the same principle. You can contact your doctor to see what the most likely side effects will be for your type of chemo regimen.)

Common terminology criteria for adverse events (CTCAE)
https://ctep.cancer.gov/protocoldevelopment/electronic_applications/docs/CTCAE_v5_Quick_Reference_8.5x11.pdf

It should be noted that drug Adverse Reactions are usually coded on a 4-point scale ranging from Grade 1 through Grade 4:

• Grade 1: (Mild)
• Grade 2: (Moderate)
• Grade 3: (Severe)
• Grade 4: (Life-threatening)

Here are the details for the special case of diarrhea. In this case, an increase of more than 6 watery stools per day is considered serious and requires immediate doctor intervention to avoid termination of treatment. This is because severe diarrhea causes excessive loss of fluids and loss of electrolytes, leading to multiple problems like kidney damage, kidney and bladder stones, etc. It should be noted that chemo-related diarrhea is different from the common traveler's diarrhea that we are familiar with. Chemo-related diarrhea is more difficult to deal with and may require special measures in order to control it. Similarly for mouth sores. These sores are not the same as the canker sores that we have had in the past. They are much more virulent and will not just go away with the passage of time. They need to be treated properly with appropriate medical procedures. If not, the mouth sores will soon gravitate to throat sores, then to larynx sores, and finally to sores in the lungs (i.e., pneumonia). Simple mouth sores need to be taken very seriously as soon as they appear, otherwise they can soon escalate out of control if they are not treated appropriately.

Diarrhea A disorder characterized by an increase in frequency and/or loose or watery bowel movements.

• Grade 1 -Diarrhea Increase of <4 stools per day over baseline; mild increase in ostomy output compared to baseline
• Grade 2 - Increase of 4 - 6 stools per day over baseline; moderate increase in ostomy output compared to baseline; limiting instrumental ADL (Activities of Daily Living)
• Grade 3 - Increase of >=7 stools per day over baseline; hospitalization indicated; severe increase in ostomy output compared to baseline; limiting self care ADL
• Grade 4 - Life-threatening consequences; urgent intervention indicated

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Here are some additional tips for dealing with other types of side effects:
https://fightcolorectalcancer.org/wp-content/uploads/2020/02/SideEffects_MiniMag_2019_WEBREADY.pdf

@O Stoma Mia , thank you for you load of information! Very helpful to read thru the collection.
Our onco is planning to do 12 cycles of folfoxiri+avastin with us and see. Though this morning I just got a call that his protein level (thru urine) is bit high and if its too high, it could mean we need to take off avastin, so need to be very carefully monitored Not sure what else we can do to combat/lower this.

I have the same struggle as beach sunrise regarding bloodworks. Have to find outside labs and order it myself. But I hope it will give me a baseline to look at least. I read thru these markers and starting to make a little sense of what some of these means. I think the next struggle would be, figuring out what supplement or medicine can be taken safely while on this chemo combo.

For my wife's biochemistry, we did not need Avasatin (mab antibody for VEGF-A) because we were able to attack the precursor of VEGF-A directly to destroy excess precursor and indirectly to reduce precursors formation in one common major cancer process, where the chemical has side benefits with 5FU drugs. It may or may not help -oxi and -iri. This situation can addressed at different levels of blood testing. We used the cheap blood tests that use more assumptions, Berlanger actually measures VEGF-A and cytokines.

For LN we used chronomodulated chemistries 24 hr x 2500 to stop the met spread as circulating cells or clusters, with the lowest chemo levels for the minimum part of the daily cycle. During the first years, we had to climb a mountain to increase (immuno)chemo intensity and CRC cytotoxicity beyond Folfox, -iri, gem- combinations with the mild stuff as the main punch, each day. Ideally you kill CRC cells AND enhance normal cell functions at the same time by modulating multiple pathways. This is part of the idea of nutraceuticals, but we found we had to use 5FU and flex minor drugs with the various nutraceuticals to inhibit enough cancer pathways to weed out different locations over time.

Our experience: Partial response (a major local kill event) right off to an aggressive nutraceutical and off label drug attack, then surgery, ramp up immunochemo techniques for a year, another surgery hours near to immunochemo to remove major LN, ramp up chemo and immune techniques, then another major set of local dissolution events witnessed by scans, then some years of smaller series events visible in the blood work.

Hi Susan

I can empathise with you because your husband’s diagnosis is identical to mine — I am in my late 30s, I think we’re probably around the same age too?

My husband responded very well to Xelox and is now on maintenance chemo (TS-1) and Avastin. He’s very well now, NED and on a 3 months CT scan surveillance. Feel free to DM me if you need someone to talk to.

Take care
Siti

susanCT1 wrote: .. an option on our Tempus report..

At Tempus, we offer comprehensive genomic testing (DNA, RNA, etc). These next-generation sequencing tests can be performed to identify specific alterations that may drive the behavior of your cancer. This information may help your physician optimize a course of treatment based on your unique cancer.

If you and your physician decide that genomic testing is right for you, we work directly with your physician to obtain the necessary specimen samples and clinical information. A report with your results will be delivered to your physician, and he or she will contact you once the report has been received to discuss the results and determine the best next steps.

Source: https://www.tempus.com/patients/oncology/

I notice that you mentioned that your husband used the Tempus lab for his genomic testing. Do you have any comments on how this went? Was it very expensive? Did insurance cover the cost? Did you get a choice of how extensive a profile you could request? Did it take a long time for the results to come back? Was it easy/difficult to make sense out of the results?

I'm just curious to know if this is a convenient, affordable service that other patients might want to make use of.

Thank you.

@siti, yes, we are in a very similar situations. In fact, i noticed we even went to the same city at one point. Will connect you via PM

@JJH, sorry for the late response.
Regarding Tempus report, all you have to do is request your oncologist to do this test and they should initiate the process. Insurance will pay certain part, but you can fill a form and if your family income is below a line, the remaining balance is footed by Tempus. Ours was requested on the first day after we stepped into Oncologist's office, we did not have a say as to what was requested(I honestly didnt even understand it at the time to ask what to be profiled). But now that I know more, I realize he did it all wrong. The test took about 3 weeks for us, and result was delivered to the oncologist direct.

If you have a chance, you should request the comprehensive version, not the common version which is a lot less gene tested. 2ndly, you should be VERY clear its done on your primary tumor, not mets. I asked our oncologist and he said its done on primary, but I saw another related report which had very different mutation and had suspicion and my investigation ended up confirm that its done on one of our lymph nodes mets instead. Primary and Mets could show very different mutation! This just goes to show how careless these oncologist can be.