Category: Guide

Guide

All about KRAS

This guide is primarily for stage IV patients with KRAS-mutated MSS colorectal cancer. KRAS mutations may be already present in your tumor, or may be acquired as a result of treatment.

We hope this guide will help you understand how to navigate your treatment options. Don’t worry if you don’t really understand what KRAS or MSS means yet. We will cover that, along with information about the rapidly changing landscape of KRAS-targeted therapies!

Please note, this guide is not really meant for stage II or III patients with a KRAS mutation. We know that many people with earlier-stage cancer may want to know about their mutations and sometimes like to get a “head start” on treatment options in case of progression. However, unless you are currently dealing with stage IV CRC, your KRAS status likely won’t impact your treatment plan.

If your disease is stage I-III, it may make sense for you to be proactive and stay on top of surveillance, including additional tools like ctDNA MRD testing if available to you.

As you learn about KRAS you might land on information about KRAS mutations in OTHER types of cancer. Because cancer is such a complex disease, these mutations act very differently across different cancer types. So make sure you only focus on how it is relevant for KRAS-mutated CRC.

Now that we have those disclaimers out of the way, what does this mutation really mean for you? Read on to learn more.

The big picture

What do I really need to know?

Everyone with stage IV colorectal cancer should know their KRAS status. There are multiple ways of getting tested. Read more here
The KRAS mutation is just one facet of your cancer. It can impact treatment choices, but it’s best to look at it in context. For example, how much your cancer has spread when you’re diagnosed, where you have metastases, and your response to chemo seem to be way more important than your particular KRAS mutation.
KRAS status does change your treatment path, but ONLY if you are stage IV. In general, patients with KRAS mutations can’t receive EGFR inhibitors. There’s some nuance to this, see more below.
You might hear people call KRAS mutations “undruggable.” To be clear, that doesn’t mean that standard-of-care treatments don’t work! Some KRAS mutations have specific treatments targeting the mutation available now. Other KRAS mutations do not have targeted treatments yet, but research is ongoing. However, this does NOT mean that your disease is untreatable. Standard of care has been thoroughly tested for everyone.

What is a mutation, anyway?

Our bodies are made up of trillions of cells, each containing two copies of cellular DNA. DNA is like an instruction manual that tells cells how to grow, divide and function. When DNA gets damaged, or changes in certain ways, this leads to mutations. Some mutations don’t matter, but others lead to cancer by letting cells grow out of control.

In colorectal cancer, certain mutations are especially important. KRAS is a driver mutation — meaning it helps cancer start or causes it to grow. These mutations happen over time due to aging, inflammation or environmental exposures.

What is KRAS?

RAS is a family of 3 genes: KRAS, HRAS and NRAS. In colorectal cancer, KRAS is the most commonly mutated gene of these three RAS family members.

These genes help control cell growth by sending signals inside the cell. Kind of like flipping a switch, these genes tell the cell when to divide.

In a healthy cell, RAS genes turn on and off at the right times. But if there’s a mutation (especially in KRAS), the gene can get stuck in the “on” position, leading to uncontrolled cell growth and cancer.

There are many types of KRAS mutations (KRAS G12D, KRAS G13D, KRAS G12C, etc) that can be targeted for treatments. More on this below!

Why does it matter?

If you have a KRAS mutation, certain drugs used to treat stage IV cancer called EGFR inhibitors (like cetuximab or panitumumab) are usually not given.

There’s good news if you have a KRAS G12C mutation (a small subset of patients, around 3–4%), because new KRAS G12C inhibitors have recently become available and may be used in combination with other treatments.

A lot of exciting research is focused on targeting KRAS mutations, so we expect more treatment options to emerge soon for other types of KRAS mutations as well.

How do I get my mutations tested?

Doctors test for specific mutations to better understand your cancer and sometimes to guide treatment decisions.

Your oncologist may order KRAS testing when you’re diagnosed. All stage IV patients should have this test done at diagnosis. Your KRAS status may be tested using a tumor biopsy, resected tumor tissue or blood. Common testing methods use an NGS panel or a PCR test, and many of these tests will also provide information on other mutations you may have.

When it comes to CRC, biomarkers including MSS/MSI-H, KRAS and BRAF are all relevant to treatment decisions, so get panel tumor testing done early where many biomarkers including KRAS are tested.

Deep dive

How do I read my test report?

On test reports, KRAS mutations are usually written in a specific format. We’ll go over this below.

Note: If you see “KRAS Wild-Type” or “WT”, that means the test did not detect a KRAS mutation in your cancer.

Here's how test reports work

KRAS mutations are usually written in a specific format: First the gene name, then a letter, a number, and another letter. Each part tells you something specific about the change.

Here’s how it works:

The name tells you what gene family we’re looking at
The first letter is the normal (original) amino acid. Amino acids are the building blocks of proteins
The number is the position where the change happens in the KRAS protein sequence
The second letter is the mutated amino acid that replaced the original one and results in the changed protein

For example:

KRAS G12D means glycine (G) at position 12 in the KRAS protein is replaced by aspartic acid (D)

Key note: These mutations are NOT interchangable. G12C and G12D are just one letter apart in the alphabet, so you might think that the mutations are similar. You can think of a mutation as a lock, and a targeted treatment as a key. Each key only works on its specific lock.

Why does this matter? These small changes affect how the KRAS protein works and how your cancer responds to certain treatments.

One more note on reading your KRAS mutation status – your report might say G12x or G13x, for example. All this means is that the test used wasn’t designed to specify the mutation, but just shows that the particular position that has been mutated. For all practical purposes, mutations in RAS hotspots (places where the gene is commonly mutated) makes people with those tumors ineligible to get EGFR inhibitors. It doesn’t matter what it is mutated to for you to be ineligible.

So when is it important to know the specific mutation? When there are targeted therapies for a specific mutation, such as KRAS G12C, this is important. Right now we have targeted therapies for KRAS G12C, so if your report says G12x and you have metastatic CRC, ask for an additional test that will provide your specific mutational information.

DocTalk: Understanding your biomarker report

Are KRAS mutations inherited?

No, KRAS mutations usually don’t come from your family, and you can’t pass KRAS mutations on to your children. KRAS mutations are part of your tumor’s DNA, not your normal cellular DNA! They arise over time, probably due to environmental factors, aging or inflammation.

How common are KRAS mutations?

KRAS mutations are one of the most common mutations in colorectal cancer – found in about 45% of metastatic CRC cases. It is most often associated with “right-sided” colorectal cancer.

And they are super common in a lot of other cancers, too. Here’s a graphic that shows the breakdown of specific KRAS mutations in CRC (with more specifics for G12 since those are most common):

It is important to note that KRAS mutations act differently in different types of cancer, so a treatment that targets a KRAS mutation in, say, lung cancer, may not work the same in CRC. Cancer just isn’t a simple disease!

How does my KRAS mutation affect my prognosis?

Prognosis is one of the trickiest issues in cancer treatment. It is really easy to get caught up on the statistics (believe us, we know!) The bottom line on prognosis is that none of us are a number – we are all individuals with many factors that impact our health.

Some studies say patients with KRAS mutations have worse outcomes, and other studies say they don’t. In general, KRAS mutations in metastatic colorectal cancer do have a modest negative impact on prognosis. The important thing to remember is to pay attention to the specific KRAS mutation studied, as not all KRAS mutations are the same when it comes to prognosis.

The impact of KRAS mutations are not as strong as BRAF mutations, significant tumor burden, or poor ECOG score.

So KRAS is an important biomarker for treatment planning in stage IV CRC, but it’s not a standalone predictor of outcome.

Retesting KRAS mutations

Because your KRAS status affects treatment options (whether or not you might get EGFR inhibitors, for example), it’s a good idea to re-check your KRAS status multiple times throughout your treatment, particularly at disease progression or before changing therapies. Liquid biopsies can be an efficient way to check your KRAS status using blood. For multiple reasons, there may be variations in your KRAS results during treatment. This will help ensure your treatment decisions reflect the current biology of your tumor, not just what was true at diagnosis.

If there is a change in your KRAS status, discuss with your doctor how this may impact your treatment options.

Established treatments

At this time, there’s one important thing to understand in the treatment landscape regarding KRAS mutations. Unless you have KRAS G12C or are entering a clinical trial for another KRAS mutation, your treatment plan is “standard of care.” Read on for a quick overview:

‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎ ‎	KRAS G12C	Other KRAS mutations
Stage I-III	Standard of care (SOC)*	Standard of care (SOC)*
Stage IV	First-line — Chemotherapy +/- VEGFi targeted therapy (bevacizumab) Second-line — Targeted therapy: EGFR inhibitor (cetuximab or panitumumab) + KRAS G12C inhibitor (adagrasib or sotorasib)	First line — Chemotherapy +/- VEGFi targeted therapy (bevacizumab) Second line — Chemotherapy (SOC)*

* Per NCCN guidelines

You might be asking, wait ― why add an EGFR inhibitor for stage IV patients when KRAS-mutated tumors don’t usually respond? It’s true that so far, patients with KRAS mutations were told that EGFR inhibitors (like cetuximab or panitumumab) don’t work. That’s still true when EGFR inhibitors are used alone or with standard chemotherapy.

But here’s the twist based on new research!

In patients with KRAS G12C mutations, when paired with a KRAS G12C inhibitor like adagrasib or sotorasib, an EGFR inhibitor helps shut down a backup pathway the tumor uses to stay alive. By combining the two treatments, the KRAS G12C inhibitor targets the main tumor growth driver and the EGFR inhibitor blocks the tumor’s escape route.

This dual attack has shown better results in clinical trials than either drug alone, and that’s why this combination is now part of treatment guidelines.

No mutation left behind

Some people are concerned when they hear there aren’t targeted therapies available for their specific mutation, and that they are “just” receiving chemotherapy like FOLFOX or FOLFIRI. Chemo is the most effective treatment for MSS colorectal cancer, whether you have a KRAS mutation or not.

If treatment is a meal, the entree is chemotherapy! You can have different side dishes based on your specific mutation(s). This means whether you have a KRAS mutation or not, chemo is doing the main work for you.

For example, people with KRAS mutations can have a side of bevacizumab. If you have KRAS G12C, your side dishes are tailored to your specific circumstances.

Know that regardless of your mutation, you’ll still have a treatment designed for you.

DocTalk: Targeting RAS mutations

DocTalk: KRAS therapies for CRC

Emerging treatments

There’s a lot going on in the RAS world these days. With so many new trials launching, this guide could be out of date the moment it’s published. So rather than listing every study, we’ll highlight a few key areas of active research — with the understanding that new strategies may be right around the corner. If you’re interested in learning about specific trials, join COLONTOWN to become part of our RAS CLINIC group.

The NCI RAS Initiative is a major research program led by the National Cancer Institute to find better ways to treat cancers driven by RAS mutations, including KRAS. Once thought “undruggable,” RAS proteins are now the focus of breakthrough science. The initiative brings together experts from government, academia, and industry to develop new drugs, tools, and strategies — all aimed at targeting RAS-driven cancers more effectively.

Researchers are working hard to:

Bring targeted therapy to first-line and combine with chemotherapy for KRAS G12C
Develop drugs that target more KRAS mutations, like G12D and G12V
Improve combinations of KRAS inhibitors and EGFR inhibitors
Use liquid biopsies to monitor resistance mutations and guide rechallenge therapy
Develop pan-RAS inhibitors (which target KRAS, NRAS and HRAS mutations) and pan-KRAS inhibitors (these target multiple types of KRAS mutation so patients with different KRAS mutations can be on the same drug)
Look at new drug combinations that block upstream regulators like SHP2 and SOS1, which help activate KRAS
Develop drugs for downstream pathway targets like MEK
Investigate KRAS-targeted vaccines and immunotherapies

The goal of all of these research angles is to shut down the KRAS pathway more completely. Ultimately, the ongoing research and clinical trials will continue to reveal potential treatment strategies, and with them, improved patient outcomes.

Why are some KRAS mutations hard to target?

KRAS is like a master switch inside your cells — when it’s mutated, it can stay permanently “on,” constantly telling the cell to grow and divide. That alone makes it dangerous.

But here’s the real challenge: A KRAS mutation can also activate multiple downstream pathways that fuel cancer growth.

Even if you block one pathway (like EGFR upstream), the KRAS protein can still:

Trigger the MAPK pathway (which promotes cell division)
Activate the PI3K pathway (which helps cells survive and resist stress)
Interact with other signaling networks, allowing the tumor to adapt

Because of this redundancy and flexibility, KRAS-driven cancers are good at finding workarounds — which is what made shutting down KRAS mediated signaling pathways very difficult. In addition, researchers had a very hard time finding effective compounds which could block KRAS mutants from staying on, despite trying very hard for many decades.

Only recently, with breakthroughs like KRAS G12C inhibitors, have researchers found new ways to trap KRAS in its inactive form.

Researchers selected the G12C mutation as the initial study target because the cysteine represented by C is an amino acid with a reactive sulfur group. This allowed researchers to design a molecule to permanently bind to this cysteine, sort of “supergluing” the KRAS protein in its inactive state.

There are dozens of enrolling clinical trials underway testing new ways to stop KRAS mutations in their tracks.

Other mutations such as G12D, G12V, and G13D do not have a reactive cysteine in place of glycine, so G12C inhibitors do not work in these cases. But a lot of research is ongoing, and remember, ALL KRAS mutations used to be considered undruggable!

DocTalk: One KRAS G12C trial

Want to learn more about RAS mutations?

Want to learn from patients with RAS mutations? Ask to join TOM’S RAS CLINIC for KRAS/NRAS/HRAS+ clinical trials group.

We also recommend you join either TOM’S MSS CLINIC or TOM’S MSI-HIGH CLINIC group (whichever is applicable to you) as you are not limited to enrolling in targeted KRAS trials only.

Want to join COLONTOWN? Fill out the registration form here.

Guide

Second Opinion Guide

Getting a second opinion isn’t about second-guessing your doctors. It’s about making sure you have the best information, the right team, and a treatment plan that fits you. Whether you stay the current course or take a new path, the confidence that comes from hearing another expert’s perspective is pretty powerful.

What do I really need to know?

Second opinions can be valuable for anyone, not just stage IV patients, but they are especially helpful in advanced or complex cases.
A second opinion may confirm your plans or change them drastically.
Oncology is complicated. Doctors are usually comfortable with patients seeking additional expertise.
Setting them up does take time, so get started as soon as you can.
There could be multiple points in your cancer journey when a second opinion might be helpful.
There are practical considerations to keep in mind – finances, travel, time. Planning for these up front can help you manage them down the road.
Getting your records and questions organized can help the process go more smoothly.
COLONTOWN is a great place to do research. Ask questions about other patients’ experiences with specific doctors and cancer centers.
Know when you’ve gathered enough expert opinions to move forward – seek expertise but don’t delay decision-making too long.

What is a second opinion?

When you’re first diagnosed, your care team (often a medical oncologist and a surgeon) will recommend a treatment plan. This is called your first opinion.

A second opinion means having one or more additional specialists (often at a different cancer center) review your case. This additional recommendation may confirm your current plan or offer new treatment options you hadn’t heard about or considered. Some patients even seek a third or fourth opinion—especially when dealing with a complex case or limited options.

Even if the second opinion confirms the first, it can help you walk away with peace of mind, the confidence to move forward—and hopefully a better understanding of why that plan was recommended.

Why get a second opinion?

Most oncologists and surgeons are familiar with and welcoming of different perspectives on their cases. Second opinions are not about distrust — they’re about gaining clarity, especially when:

You’re newly diagnosed
You’re facing a major decision
Your case is complex
You’ve been told you’re not a candidate for surgery or other treatments
You want to explore alternatives like clinical trials, watch-and-wait for rectal cancer, or a new localized treatment — as these may not be available at your closest cancer center

Doctors vary widely in experience and perspective. Another doctor or cancer center may confirm your current plan, or offer new options. Some patients find out that they’re eligible for surgery or advanced therapies they weren’t previously offered. Others learn that their imaging results were misread, or that additional tests are needed.

Just because you get a second opinion, it doesn’t mean you necessarily need to move your primary cancer care. Often, these visits serve as one-time consultations to verify or tweak your treatment plan or a specialized procedure. Then you can go home to continue your treatment.

You might also find that a second opinion doesn’t seem necessary in your case. If you feel confident in your treatment plan and it lines up with patients in similar situations (COLONTOWN is a great place to compare notes with others), then it is certainly fine to move forward with treatment. Don’t feel pressured to seek another opinion unless it makes sense to you.

Do second opinions really make a difference?

“A 2018 study published in the Annals of Surgical Oncology that found that a second review by a multidisciplinary tumor board at a National Cancer Institute-designated cancer center changed the diagnosis for 43% of the 70 patients in the study.”

Who should get a second opinion?

Many patients might benefit from a different perspective. Below, we go over some scenarios where second opinions might be particularly helpful.

Stage IV patients

Patients who are told they will be on “chemo for life”
Patients who have not received tumor testing and don’t have information about their tumor biomarkers
Patients with oligometastatic disease — only a few metastases at diagnosis
Rarer subsets of CRC, like tumors with BRAF V600E mutations, MSI-H tumors or patients with actionable genetic alterations.
Patients considering clinical trials
Patients who don’t want to leave any stone unturned in their treatment planning

How do I know if my tumor mutations are actionable?

Take a look at “What do I really need to know?” inside CRC101, our comprehensive guide to all things colorectal cancer.

Non-metastatic patients

Stage IIIC patients with specific concerns about recurrence (even if scans are clear)
Stage II or III patients who want to make sure they have been offered the most up-to-date treatment options
Locally advanced rectal cancer patients exploring watch-and-wait
Patients considering clinical trials

Specific situations

Patients with complex cases, like coexisting illnesses, pregnancy or multiple cancers
Patients with specific genetic factors, such as Lynch Syndrome
Patients who suspect or have evidence of peritoneal mets
Patients who feel like their team isn’t a good fit and are seeking better rapport with their team
Anyone who has a gut feeling that something isn’t quite right

Don’t wait until you’re in crisis — start the process before you need to make any urgent decisions. One more thing to keep in mind: Any new information you receive from your second opinion might make decision-making more complicated, so account for that in your timeline.

When should I get a second opinion?

It might be the right time for a second opinion if…

You’ve experienced a recurrence or disease progression
Your latest scans or test results are unclear or conflicting
You’re considering clinical trials, surgery, or a watch-and-wait approach (for rectal cancer)
You suspect growth or recurrence, are anticipating an important scan or test results, and want a solid plan in place if something changes
If you have stage IV CRC and have not had genetic or biomarker testing

Don’t wait for test results before starting the process. Appointments, insurance approvals, and record transfers all take time. Getting on a specialist’s calendar early can save you stress later. If you find out you don’t need the appointment, you can always cancel (and give someone on the waiting list a nice surprise!)

Ask yourself…

Are you feeling uncertain?

Uncertainty doesn’t always mean you’re on the wrong path. Decision-making in cancer isn’t black and white — and not even the best doctor can tell you with 100% certainty what will happen in your disease trajectory.

All decisions are based on “best-guesses,” which vary greatly based on the clinicians expertise and experience. These “best-guesses” are also based predominantly on average cases and scientific data so rare circumstances can lack a clear, tried-and-true answer.

The goal is to find a path that fits you and that requires treating the whole you, not just your cancer.

Are you doubting your doctors?

It’s common to feel unsure when you get conflicting advice. Ask yourself: Is this discomfort about the treatment options, or about how you’re being treated? Sorting that out can help you move forward with more clarity.

Do you know when to stop?

At some point, additional opinions stop adding value and can delay important treatment. Sometimes patients may find themselves searching for an answer or solution that just isn’t available. If that’s you, consider that when multiple experts align, you may be ready to shift from searching for a different answer to focusing on following the treatment plan and living your life.

Need financial support to get a second opinion? Apply now

COLONTOWN’s Second Opinion Project provides financial support for stage IV patients seeking second opinions.

Interested in applying? Fill out the form here.

Other resources

"At Stage IV, it's never too early for a second opinion, especially if you've been told chemo-for-life is your only option. However, it can often be too late if you wait too long. Give yourself every chance to improve your outcome. Make your own luck whenever you can. So to all who try...good luck!"

Felix Lu

Creator of the Lu Family Fund, which supports the Second Opinion Project

Where should I go and who should I see?

The right second opinion comes from the right kind of doctor. You’re looking for someone who has more experience with your specific situation — not just any oncologist, surgeon or other specialist, but someone who can bring a particular new perspective or experience level to your case.

You really want both a strong institution and the right doctor within it. Patient communities like COLONTOWN can help you identify doctors with real-world experience treating patients like you. Patients often find that institutions have an overarching personality or risk tolerance, so look for a team that fits your needs.

Prioritize:

Expertise over bedside manner (although ideally you get both!)
High-volume specialists in colorectal cancer and/or the specific procedure you are discussing
High-volume specialists in your specific circumstances (mutations, tumor locations, etc), especially if you are stage IV
High-volume CRC centers, like NCI-designated cancer centers, which often offer more advanced options.

What does “high-volume” mean?

High-volume means that a doctor or cancer center sees a lot of people with a specific type of cancer — which means high expertise. Studies show that surgeons and hospitals with higher volumes usually have better outcomes with lower complication rates. High volume NCI centers may see hundreds or thousands of new cases every year. All that experience means everyone involved in your care — from surgeons to nurses — has likely managed patients with situations very similar to yours.

If you have liver metastases, see a liver surgeon. If you’re considering radiation, talk to a radiation oncologist. Subspecialists often know things generalists don’t. It’s usually not wise to take specialized advice from someone outside of your needed subspecialty.

At this time, some leading institutions offer virtual second opinions. So traveling may not be necessary, especially to start the process. If you don’t plan on moving your day-to-day care, you might be able to travel once or twice and then continue with virtual, consultative check-ins in the future.

Why should I find a different hospital for my second opinion?

Second opinions are most useful when they come from doctors that are not affiliated with your original team. This allows for more candid recommendations. It also potentially expands your treatment options, as another cancer center may have different resources from your primary center. Just keep in mind that a new place might mean a new culture or personality, a different sequence of testing and procedures, or even a change in treatment and chemo preferences.

What to expect

First of all, a second opinion consult appointment will feel similar to a clinic appointment without treatment. You’ll get your vitals checked, say your DOB multiple times, review history, etc. Some institutions may use your current records but others will suggest you get new scans or tests.

Some patients are seeking clinical trial options through their second opinions. If this is you, expect that you may have to complete some additional pre-screening steps. These could include scans, tests, procedures or other processes. The extra testing adds extra time to the process but it ensures you are a good fit for the trial.

Second opinions can bring peace of mind or new questions — these outcomes are normal and useful. Here are three potential outcomes:

Agreement or concordance

Your second doctor might agree with your original team, and this can reassure you that you’re on the right track, in turn helping you commit to your plan with more confidence. You might get another explanation of your situation that helps you understand the plan better.

But if you were hoping for something different, don’t be discouraged. Getting the same answer is often a good outcome, it shows that both teams see the same picture.

New ideas or alternatives

Your second doctor might suggest a different approach — from new treatments to surgery options your original team didn’t offer. That can feel empowering, but might also be overwhelming. Take time to ask questions, weigh tradeoffs, and lean on your support network.

Some people find it useful to make a pros and cons list of the suggestions they have heard. Your different care teams can help you fill in the details of this list. Asking about “best case, worst case, most likely case” outcomes can help you compare treatment options. Your team’s expertise and experience will provide additional insights you may not have.

These potential different outcomes may lead to some additional questions, but this is all part of the second opinion process. Almost all patients find it is worth the process in the end.

Complete disagreement

It’s rare, but you could find yourself with two opinions that completely contradict one another. In this case, it is helpful to ask both teams why they disagree and likely seek a third opinion.

Patient perspective by Michele

My second opinion didn’t just change my treatment plan—it gave me clarity and confidence.

I got a second opinion during a recurrence scare about seven months after finishing chemo. A routine scan showed some suspicious pelvic spots, and while follow-up scans weren’t definitive, the tumor board at my original cancer center thought I might need a major surgery. My colorectal surgeon encouraged me to get another opinion first.

At the NCI center I went to, they repeated scans and didn’t see anything alarming at that point. But a few months later, a new scan there did show a problem. Thankfully, it was addressed with a much smaller surgery—and it turned out to be benign.

I stayed with the NCI center for the procedure and now split my follow-up care between both places. The second opinion didn’t just influence my care—it helped me understand the options, ask better questions, and feel more confident about what came next.

Steps to a second opinion

Scheduling a second opinion can be pretty straightforward. Below, we go over the main steps involved, but make sure to ask for advice from the personnel at the second opinion institution as you go along. They can help you navigate their specific institution’s processes.

1. Check your insurance

Most plans cover second opinions—but call to confirm, especially if you’re going out of network or state. Ask about your specific coverage to help estimate your costs and find out if you need to get a referral before seeking a second opinion. The second opinion institution may also have financial specialists that can help you complete this task.

2. Call the office

Let them know you are seeking a second opinion consult and provide a quick overview of your situation. Depending on who you are hoping to see and your needed time frame, you might need to meet first with a mid-level provider (a nurse practitioner or physician assistant) to take your case history. However, your treatment recommendations should always come from the specialist(s) you came to see.

Ask

Do you offer in-person or virtual consults?
Do I need new scans or tests, or will you review existing ones? (If new tests are needed, check your insurance coverage)
What records do you want?
Should I provide my records?
Who should I communicate with prior to my appointment? How should I contact them? (Getting a direct number, email, name for portal of an assistant can be helpful vs a general office line)

Tip: Always bring a backup—like a thumb drive or CD of your scans and most recent oncologist notes—even if the office has digital access.

Patient perspective by Alex

I had been waiting months for my second opinion appointment and when the day finally arrived, just my luck, there was a cyber attack on my hospital’s computer system that had shut it down. The specialist had no access to any of my files or scans and without those I wouldn’t have been able to have my appointment! Luckily, I remembered that I had copies of most of my files on my phone and we were able to continue with the appointment using my tiny phone screen.

Once the visit is scheduled and the team has time to preview your records, you might also ask:

How do I access your patient portal?
How many days should I plan to stay?
Will I need to do any special prep for the visit, i.e., bowel prep or nothing to eat or drink beforehand?

3. Prepare your files and your thoughts (a "case summary")

Preparing a brief, organized overview of your diagnosis, treatment to date, and current questions and concerns can make the appointment smoother for both you and the doctor. You may find a document called a “progress note” in your medical file. This is usually updated at each oncology appointment and can be a good place to help you start pulling together your own case summary.

Even if you’re not actively looking for clinical trials, this Clinical Trial Assessment print-out worksheet is a great first step. It can help you organize all your medical information.

Tip: Call a few days before your appointment to confirm they’ve received everything. If they haven’t, follow up or bring paper and digital copies yourself.

Prepare some questions to ask. Some examples are below

What is standard-of-care treatment for my situation, and is there more than one option?
Are there any local treatment techniques (eg, surgeries, ablation, radiation approaches) here or elsewhere that would be an option for me?
What clinical trials are relevant to me — both here and at other institutions?
Do I need to receive treatment here? Some clinical trials and treatments are often restricted to certain hospitals, but they may be able to collaborate with your local oncologist to help you get the same treatment.
Are there are any other specialties or subspecialties I should see here? Will my case be discussed with them?
What is your opinion on my other care team’s recommendations? Do you offer all the same treatments? (Note: it’s helpful to know if the recommendation differs because a center doesn’t offer a treatment and/or the doctor isn’t as familiar with it or if they don’t recommend it.)
What is the best case scenario, worst case scenario and most likely outcome?
Can I reach out to you for further questions?
Will my case be presented to your multidisciplinary tumor board (MDTB?) If so, how will I get the results?

Who is on a multidisciplinary tumor board?

Medical oncologist, preferably one who specializes in CRC cases
Colorectal surgeon
Liver, thoracic, lung and/or peritoneal surgeon, if needed
Radiation oncologist
Interventional radiation oncologist
Pathologist
Geneticist
Palliative care physician to manage side effects of treatment
Social worker to provide mental, emotional or practical support
Nurse navigator to provide guidance and education through the treatment and recovery process

Do I need a second opinion every time I get scan results?

No. But if your situation changes, you hit a new decision point, or something doesn’t feel right, it may be time to check in with another expert. You don’t have to commit to ongoing care with them; just get their perspective.

How can I get a second opinion if my insurance/time/finances don't allow it?

Sometimes there are creative ways to get another review of your case. You can ask your doctor to contact another doctor for an informal consultation. Another option might be a virtual tumor board where smaller institutions present cases remotely to a group of outside experts for collaborative input.

What if I want a second opinion but my caregiver doesn't — or vice versa?

This is your treatment and you deserve to feel confident in your care. It’s okay to disagree and still advocate for yourself. Talk through the reasons together, and consider involving a neutral third party, like a nurse navigator or counselor.

Know that there are many pathways to getting a second opinion, and that COLONTOWN offers financial support for stage IV patients seeking a second opinion.

What if I already feel confident in my team and don't want a second opinion?

That’s great! If you’ve weighed your options and feel well-informed, you don’t have to seek another opinion. The goal is confidence in your plan—how you get there is up to you.

How do I know when to stop seeking second opinions?

At some point, additional opinions stop adding value and can delay important treatment. Sometimes patients find themselves searching for a solution that just isn’t available to them. Take a step back and consider how patients with a similar profile have been treated. Have they been offered something you’ve not yet discussed with a doctor? Or, have you and your doctors considered all the currently available, viable options? When multiple experts align, you may be ready to shift from searching for a new answer to focusing on implementing the leading treatment option.

Watch this COLONTOWN DocTalk to hear Dr. Lidsky from Duke University give his perspective on and evidence for second opinions.

Asking for a second opinion

Asking for a second opinion can feel awkward, but it really shouldn’t. Many doctors expect it and encourage it, but some do dislike patients seeking other opinions. Oncology is one of the most complex and rapidly changing fields of medicine so it’s literally impossible for a single doctor to know everything. More brains and collective experience regularly equal better outcomes – research shows that receiving a second opinion often leads to an adjustment in care.

Even experts can disagree

A 2020 Annals of Surgery study found that top liver surgeons around the world often chose different treatments for the same colorectal cancer cases. The authors called it a “throw of the dice.”

One of the study’s authors, Dr. Hernandez-Alejandro, mentioned the research in a DocTalk (at time stamp 11:22). As Dr. Hernandez put it, “They were experts around the world. The conclusions [of the study] were there was minimal agreement on therapeutic strategies, a lot of inconsistencies, and patients should consider second and third opinions… If your case is complex, you need to listen to more [experts]; you need to have a better option[s].”

Our conclusion? When your case is complicated, second opinions often provide new ideas and strategies for your care.

If you’re nervous about bringing it up, try using one of these conversation starters:

“My family really wants me to get a second opinion, just to be sure we’re exploring everything.”
“I trust you—and I want to feel 100% confident moving forward. These are such big decisions, I’d like to get a second opinion before we decide.”
“Would you be open to collaborating with another specialist?”
“Do you have colleagues at other centers you’d recommend for a second opinion?”

In most hospital systems, especially ones using electronic medical records, your doctor will see that you’ve had a second opinion anyway. Knowing that you’ve sought a second opinion actually helps them coordinate care more effectively. But we do recommend that you tell your primary doctor before they find out through your EMR. Telling them yourself encourages an open and respectful relationship.

What if my doctor is upset?

If your doctor becomes upset or hostile after you mention getting a second opinion, you should use this as confirmation that the second opinion is quite necessary — and it might be time to move your care to another team entirely.

If you are in a situation where it’s not practical or feasible to move your regular care elsewhere, work on your relationship with your doctor to get them on board about a second opinion. You could say that collaborating with a more experienced oncologist on difficult or complex cases might be useful to a community oncologist. Consider sharing COLONTOWN resources and DocTalks that are relevant to your case.

A doctor's perspective

Any doctor will tell you that medicine is complex. They’ve likely been someone else’s second opinion themselves. Most doctors want you to get all the information you need to feel empowered in your care.

Bottom line, a good doctor won’t be offended by your second opinion. They’ll support your decision—and may learn something, too.

“I do think patients should feel comfortable respectfully asking their doctors, should they get a second opinion? Can I get a second opinion? It’s my bias that a doctor should always say yes. I do think that second opinions are important… Nobody should take offense… Patients should do their homework. They should check with COLONTOWN and use their network… (but) don’t waste time, don’t delay your care.”

Dr. Lidsky

Surgical Oncologist at Duke University Medical Center

Practical & emotional considerations

Getting a second opinion can be empowering—but it also takes time, energy, and often money. With proper planning you can minimize the downsides and maximize the effectiveness of your efforts. Here are some big things to think through:

Set clear goals

When you are dealing with a cancer diagnosis, you’re likely dealing with so many new questions and complexities in your life. All this change makes having a plan and goals more important than ever. You don’t want to waste time or energy, so ask yourself:

What do I hope to learn from the second opinion?
Am I looking for more options, validation, or peace of mind?
Am I looking to change my primary care team or just establishing a consultative relationship?
What tradeoffs am I willing to make between quality of life and treatment intensity?
What is my risk tolerance for clinical trials or new treatments?
Do my short-term goals differ from my long-term goals? For example, are you willing to have reduced quality of life now for a higher chance of long-term success?

Knowing what matters most to you—quality of life (QOL, for short); mobility; work; travel; time with family; continuing a certain lifestyle or hobbies—will help you choose the best path forward.

Consider travel

Second opinions always take planning and, often, travel. Your appointment may be scheduled for weeks out or there might be a last minute cancellation you can fill. In all of these cases, virtual consults can be a great option, so ask if they’re available.

However, if you need to travel, consider:

What form of transportation seems best?
Can I physically manage it during any ongoing treatment?
Will I need help getting there?
Where will I stay?
If the appointment leads to future treatment, can I stay locally for surgery and follow-ups?

Tip: Some patients travel only once for a consult and/or surgery, then continue care locally with remote input from their second opinion doctor.

Can you delay treatment?

Everyone’s cancer is different. Some patients have a more stable disease, while others have issues needing urgent attention like an imminent intestinal blockage requiring surgery. If you need a treatment to start immediately, don’t delay getting a second opinion.

Think about finances

Even if insurance covers some or all of the appointment, you may face out-of-pocket costs like:

Additional tests
Transportation, lodging and food
Time off work
Child or pet care

Ask for help when you schedule your appointment by telling the staff your areas of financial concern. They may have financial counselors available that specialize in oncology patients. The larger cancer centers often have lists of discounted lodging available. Some even have local pet or child care suggestions if you plan to bring them along.

COLONTOWN’s Second Opinion Project provides financial support for stage IV patients seeking second opinions. Interested in applying? Fill out the form here.

Balance the emotional load

Big decisions, conflicting advice and scanxiety are often part of the cancer journey. It may seem counter-intuitive, but second opinions can potentially increase these emotional burdens.
Just as with everything around cancer, you don’t have to navigate these issues alone. COLONTOWN is a great place to ask questions about what to expect and how to get help. Your local cancer center may also have social workers or other professionals to help you apply logic and reasoning to balance out the emotions of difficult decisions.

Watch this COLONTOWN Resource Fair that brings together a helpful collection of support organizations that can help ease the burden.

Bottom line: You deserve options and the best care possible

Getting a second opinion is about making sure you have the best information, the right team, and a plan that fits you. Whether you stay the current course or take a new path, the confidence that comes from hearing another expert’s perspective is pretty powerful.

But your situation is unique. You may only need one second opinion or you may need a few. Another opinion could make sense at the beginning of your cancer journey or later on. Or, after reading this guide, you may decide a second opinion isn’t necessary for you. These are all valid decisions.

If you’re unsure where to begin, reach out to others who’ve walked this road. In COLONTOWN and other communities, patients support each other in navigating the questions, logistics, and emotions of seeking a second opinion.

Come join us in COLONTOWN

Interested in learning more about second opinions? Find practical information in our BILLING OFFICE group — and so much more in COLONTOWN.

Interested in joining? Fill out the registration form here.

Guide

All about liver mets

Welcome to our CRC liver metastases guide. This is a crash course for people with stage IV liver mets, specifically people who only have liver mets, or liver mets make up the majority of their metastases.

Believe us, we KNOW how scary it can be when you first hear you have liver mets. Many of us have been there. We hope this guide will help you see how many treatment paths are available — and that new ones are emerging regularly.

So what treatment options are out there? And how do you weigh all your options? Read on to learn more.

What do I really need to know?

Do your best to see a liver surgeon at a high volume, well-respected cancer center early. This is critical, since generally getting to surgery (whether upfront or further down the line) currently has the best outcomes
If you hear you are not a surgical candidate, that means you are not a candidate RIGHT NOW. Start with getting a second opinion. Even if the second surgeon agrees, know that there are many treatment options available to get you to a place where you may be eligible for surgery
One size does not fit all. Disease in the liver varies greatly, and there are a ton of potential liver-specific treatments
Your treatment plan should keep the long game in mind. Liver mets often return, so it’s best to develop a plan that keeps as many future treatment options on the table
If you have liver mets (even if you have a primary tumor or other mets) you might hear that you should treat the liver mets first. This is because liver mets grow fast (and can shrink fast!), and the liver does a lot of important work in your body. Getting your liver working well should be your first priority
Having surgery of any type can delay starting chemotherapy (if needed), so it’s important to come up with a strategy for the order and timing of your treatment plan

The big picture

Colorectal cancer most commonly metastasizes to the liver. Doctors sometimes call these tumors CRLMs (colorectal cancer liver metastases) for short, but usually refer to them as liver mets.

Although there is some disagreement on the exact numbers, about 25-50% of CRC patients will develop liver mets, and most are discovered in the first three years. Men and people with left-sided colon cancer seem to be more likely to get liver mets. Rectal cancer seems to be more likely to metastasize to the lungs.

With so many treatment options for liver mets, many patients are able to manage their disease, or reach no evidence of disease (NED) status. Patients are living longer, with improved quality of life, thanks to cutting-edge treatments and management.

One piece of advice we want to give right up front — make sure you have a liver surgeon on your team before you decide on a treatment plan. This could be a surgical oncologist whose focus includes liver surgery, or a liver surgery specialist (a hepato-biliary surgeon).

Get a surgeon’s eyes, and a surgeon’s opinion, even if this is through your tumor board. Even if you’re not a surgical candidate at the time, they can provide insight into what might need to happen to become surgical — plus, they’ll already be on board as things change with your disease. Learn more as to why in this DocTalk on second opinions with Dr. Lidsky.

What’s a multidisciplinary tumor board?

In some cancer centers, a number of doctors who are experts in different specialties review and discuss a patient’s disease and treatment options. You might see this abbreviated as MDTB or MTB. There are online MDTBs that meet on a regular schedule that most cancer centers are part of. See our glossaries of terms for more words or acronyms that might be unfamiliar!

Patient perspective by Marie

Hello! My name is Marie, and I am a 9-½ year stage 4 colorectal cancer survivor! I was diagnosed stage 4 in September 2013 with 5 tumors in my liver, bilobular. My story really started in 2007 when I was treated for very early stage breast cancer. I had a lumpectomy, radiation, and then took the drug Tamoxifen for 5 years. During those 5 years, I would have my bloodwork done every 3 months. In July 2012, I finished the Tamoxifen. My oncologist at the time then put me on 6 month visits.

It was July 2013, and my bloodwork came back showing I was extremely anemic! He asked if I had fatigue or dizziness. At the time I was working full time, raising 3 children, and had just lost my Dad, so I was pretty much tired ALL THE TIME! So we tried iron supplements and a recheck showed my iron increased. We stopped the supplements and when rechecking my blood, it was low again. He scheduled an iron infusion and had me do a take home stool test. The stool sample came back positive for traces of blood, so he recommended a colonoscopy and endoscopy to see If I was bleeding internally somewhere.

When I woke up from my scope, I could see the look on the doctor’s face and knew it was not good news. He told me I had a mass in my colon that was almost obstructing, and he was not able to get the scope past. That I likely had cancer. I was in shock! We went home, and my sister called me to see how my appointment went. I broke down crying. Her husband is a cardio thoracic surgeon, and he then called my husband to offer his guidance. Of course we accepted. I had CT scans a few days later, and they showed tumors in my liver. My brother in law immediately set up appointments with a liver surgeon and a colorectal surgeon, and I decided to also look for a new oncologist.

Consensus with the team was to do colon resection first then 6 cycles of folfox; PVE; liver resection; then 6 more cycles of folfox with ‘curative intent.’ In my mind, that timeline was basically one year and I would be back to normal. So the end of September I had a PET scan, and a few days later I had my colon resection. Recovery was uneventful. I had a port installed and started chemo in November.

After my 6th cycle, my scans showed progression. Ugh! I had a liver biopsy to make sure the liver mets were not from the breast cancer. I remember my liver surgeon saying that would be bad. Biopsy confirmed CRC mets and so they switched me to FOLFIRI with Avastin. I did 4 cycles and had another CT scan. This scan showed all tumors had decreased in size. My liver surgeon was ready to go. My brother in law, however, wanted me to get a 2nd opinion at MSKCC. So I met with Dr. Jarnagin who basically laid out the same surgical plan. At that time, NO ONE was doing HAI pump except for MSK. He only briefly mentioned to me that it might be an option. But I was resectable so it was not pursued. I went back to Philly and met with a 3rd liver surgeon and ultimately decided to go with my original guy, Dr. Gary Xiao (I like to call him my east coast Dr. Fong :)).

In May 2014, I had surgery to resect 3 tumors, radio frequency #ablation on 2 tumors, and a portal vein ligation. Plan was to go back in and take out my right lobe 6-8 weeks later. Post op scans showed NED so my surgeon said we can do surgery any time so let’s wait and see. I then completed 8 more cycles of FOLFIRI with Avastin.

I stayed NED until May 2015 with one new met showing in my liver and a tiny 8 mm spot in my lung was back (first seen as a 5mm spot in my PET scan). My liver surgeon said it would be an easy resection so I did 4 cycles of FOLFIRI with Avastin. Discussions were had about what to do about the lung. Spot too small to biopsy so we decided to do a VATS wedge resection at the same time as this 2nd liver resection surgery. October 2015, I had both surgeries. While in there, he also ablated the same spots from my first resection surgery. A few days following surgery, I had a bleeding complication and he had to go back in and take my left lobe out. I was in the hospital for 17 days and then acute rehab for another week. To this day, I do not remember the first week of that stay. My oncologist was ok with me not doing follow up chemo but I wasn’t sure about that so we decided to do just 2 more cycles of FOLFIRI with Avastin.

My last chemo treatment to date was March 2, 2016!

I stayed NED until January 2017 when a suspicious spot showed in my liver. We decided to do a biopsy and at the same time ablation. Biopsy came back inconclusive. January 2018 the area where they ablated in 2017 was showing concern. MRI and PET scan showed uptake. Biopsy confirmed CRC met. So now we had to decide whether to do another surgery or just ablation. My liver surgeon was concerned about adhesions and how difficult surgery #2 was because of them. After much discussion and the urging of my brother in law, we decided to go ahead with the surgery. Plan was if he got in there and it was too difficult with the adhesions he would then just do ablation. April 2, 2018, I had surgery and it turned out to be much easier than he thought. I was now NED for the 3rd time. My easiest recovery to date… I was on the dance floor at a family wedding 4 weeks post op!

A few months after this surgery, I started to feel a nodule in my abdomen close to my incision. At first we thought it was scar tissue. In July it did show on my scan but there wasn’t any uptake. We decided to wait to see what it looked like in October at my next scans. Well it had almost doubled in size and was now lighting up on my MRI and PET. It was determined that this nodule was caused by tumor seeding from one of my liver biopsies. They could see the track of the needle from my liver up through the muscle, fascia and skin. They were also concerned that it could be in my rib as well. November 2018 I had surgery to remove the nodule, skin, fascia, muscle and a piece of my liver. Mesh was needed to put me back together because this was the 5th time my abdomen had been cut open and I don’t have much to begin with! Liver pathology was clear. My oncologist recommended “light” radiation to the soft tissue of my abdomen just to make sure anything possibly left behind would be eradicated. NED for the 4th time. I had 15 radiation treatments in Jan/Feb 2019. I am MSS, KRAS G12D, TMB 6.

To date, my scans have been clear and all my bloodwork is normal except for my platelets which have been slowly creeping back up. I had a scare in October 2021 with a new 3mm nodule showing on my chest CT. I’m on a yearly chest CT scan schedule, so we decided to rescan in January and that came back clear! My platelets finally broke into the 100s at my last check. I’ve “graduated” to 6-month liver MRIs (I’ve been scanning every 3 months since diagnosis and more at times).
Next MRI is in April – if clear that will be a MAJOR milestone hitting the 5-year cancer free mark for my liver! I’ve been able to celebrate more milestones than I ever imagined… high school graduations, college graduations, graduate school graduations, my 30th wedding anniversary in 2021, Grandpa David’s 101st birthday, seeing my older daughter get engaged (this is a BIG one since my mother died before I was married), 16 years breast cancer free, my 9th birthday since that fateful colonoscopy in 2013, and many more!
This is my short version. I’ve spared you all the details in between – this has not been an easy road, but I am so grateful to be able to share. My husband has been my ROCK. I have 3 beautiful children; Lauren 27, Michelle 24, and Jack 21. They have had to endure a lot and have stepped up incredibly. I left my job of 13 years in 2016 to concentrate totally on my health.

Educating, encouraging, advocating, and supporting has become my new norm.

I have forever been changed by cancer, and I have chosen to use this experience in the most positive ways. COLONTOWN has allowed me to do that, and working with Paltown gives me purpose. I truly believe COLONTOWN helped save my life. If I can make a difference in someone else’s life, this has all been worth it.

What's going on in the liver?

Liver metastases are most often found by CT scans, but the “gold standard” for really analyzing the situation is a liver MRI. If your doctor sees a potential spot in your liver during a routine CT scan, an MRI is the next step to rule it out.

Labs have limited usefulness at diagnosis, but they can help you monitor your disease over the long term. They can also help you monitor how well your liver is working in general.

Let’s start off with some basic anatomy. The image below shows where the liver is located in the body.

Your liver has a number of important jobs, which explains why you might hear that you should handle liver mets first. The liver is the body’s filter, detoxifying and purifying the blood. Because of this filtering job, large particles (like cancer cells!) can get trapped and grow into metastases.

The liver also produces proteins that make up your blood, and that help your blood clot when it needs to. If this process is not working, many other systems in the body will not function properly. End-stage liver failure leads to fluid leaking into areas where it should not be, like the abdomen or legs.

The liver is one of the only organs that can regenerate (it can grow back!) So you may hear your team use the term “sufficient remaining liver remnant” — how much healthy liver tissue needs to be left after surgery in order for your liver to do its job and start growing back. This number is about 30% in a single piece.

The liver has two lobes (left and right). This is a bit confusing, but the right side of the liver is actually pictured on the left side of the image below, like it is in scans as well! This is because “left” and “right” refer to how the liver is positioned if you look down at your body right now.

The liver is also broken into 8 different sections. Your doctor might use these numbers to refer to where your tumor(s) are located.

What can pain tell me about my liver mets?

The majority of liver mets do not cause pain. If you do have pain from liver mets, it suggests that the growth may be close to the surface of the liver (often described as close to the capsule). Pain does not correlate with severity or lack of severity of disease. However, a decrease in pain on treatment can indicate a response to treatment. Any change in pain (increase or decrease) should be discussed with your care team.

The body is super interconnected, so pain in internal organs can also show up in surprising places. Liver mets sometimes cause pain in your shoulder or back. This is called referred pain. If you’re experiencing this, let your team know.

Finally, be aware that a liver biopsy can cause this referred pain as well.

Patient perspective by Josh

I do cancer well, very well. And I like to dabble in different ones. I dare say it’s my superpower. For the sake of brevity, I have to recount this in bullet format.

Here goes:

July 2012 – basal cell carcinoma skin cancer #1. Just a wee little wedge from my forehead and I’m back in business. Small, well placed scars are cool, right?

May 2017 – melanoma stage 1. Lost about 1/3 of my left ear to that one. Alright universe, this isn’t cool anymore. Enough cancer already.

May 2018 – At this point in life, I was 41 years old and seemingly ridiculously healthy. But after noticing blood and mucus in my stool, I arranged an appointment with a GI. He didn’t hesitate to order a colonoscopy which revealed 50+ polyps (not a typo) and a 5 cm tumor in my sigmoid colon cancer. I had robotic resection shortly thereafter and was given a diagnosis of stage 2A which comes with only a 10% chance of recurrence. Bullet dodged! So I thought…

August 2018 – Basal cell carcinomas #2 and #3. You gotta be kidding me! Another wee wedge from my forehead and a wee wedge from my back.

May 2019 – 1st scans since colon resection a year earlier reveal 2 lung nodules. Rescan ordered for 3 months later. Damn, damn, damn…

August 2019 – Lung nodules resolved! Presumed to have arisen from infection/inflammatory causes. Stand down from stage 4 alarm.

August 2019 to February 2021 – Nice long period with clear #scans and increasing confidence I am done with colon cancer. Rock on.

Feb 2021 – CT shows spot on liver concerning for metastasis. This is rapidly followed up by MRI (better liver imaging) that shows the spot is REALLY, REALLY concerning for metastasis. This in turn is rapidly followed up by liver biopsy that confirms (spoiler alert!) what you already know to be the case, or I wouldn’t be here typing these words. Solitary 1.7 centimeter liver met.

April 2021 through June 2021 – Did 4 rounds of FOLFOXIRI which shrank the tumor to 0.8 centimeters.

July 2021 – Tumor board recommends microwave ablation over resection due to the small size of my tumor. At this small size, the tumor board believes ablation and resection will provide the same effectiveness in terms of local recurrence odds, but ablation will preserve more liver volume and recovery will be a piece of cake. The IR inserted 3 probes around the tumor and cooked that guy down – see picture below. I was under general anesthesia, but I’m pretty sure it smelled like bacon. Recovery was not a piece of cake for me though. For a week I had muscle spasms at the probe insertion sites. I literally couldn’t even talk when the spasms hit. Good times.

August 2021 – Did 2 more rounds of chemo, FOLFOX only, dropped the irinotecan

Oct 2021 – First scans post-treatment show liver looking great, but new lung nodules have appeared??

January 2022 – Lung nodules resolved! Infection/inflammation again. Declared NED. Open letter to lungs…I could really do with less drama if y’all wanna go ahead and chill out.

So here I am in January 2022 basking in the glow of my new NED status. Will it last? I sure hope so. History says I’m a bit of a cancer factory though. But right here, right now, I feel strong, energetic, and full of stamina. My return to health is an amazing gift that I truly cherish (picture below is St Jude’s 5k run in December 2021, around 3 months after finishing chemo).

Betsy asked me to conclude by offering any words of wisdom. I mulled this over, and realized I’m not sure I have any. I have a different offer. I know that what I have gone through is basically stage 4-lite. It pales in comparison to what some of you mighty survivors have pushed through or are pushing through right now. Thus, my offer is the following. If any of you are in the southeast GA or northeast FL area, and you need help of any kind, please reach out to me. I will take you to appointments, cut your grass, shop for your groceries, you name it. I am 100% aware of how lucky I am to have returned to such a healthy state. I want to use my abilities to help those who need a hand. This offer is completely sincere.

Lastly, I want to thank our Admin Angel, Betsy Post. I marvel at her dedication and compassion for the members of this group. Time and time again I’ve witnessed her help newcomers make sense of their diagnoses and treatment options when they were feeling overwhelmed and confused. I can’t say enough how impressed I am. Thank you Betsy. And best of luck to all of my fellow Liver Lovers.

Factors that affect treatment

There are a wide variety of options for treating liver metastases. We’ll go into more detail on this below, but two big factors really determine what treatments are available to you. 1) Is the disease only in your liver or is it other places, too? 2) And, can you have liver surgery or procedures now or in the future (or not at all?)

Why is surgery the gold standard?

You might wonder why surgery is so common for liver metastases. When it comes to liver mets, surgery is considered the most effective and durable treatment. As of right now, surgical resection has the best outcomes for these patients, leading to a 5-year survival rate of roughly 40-60%. And it can lead to long-term NED status for some patients!

A long-term goal can be to get to surgery. This section focuses on liver surgery, but thinking about these factors can also be helpful while considering other treatments.

My surgeon doesn’t recommend removing the primary tumor first. Why?

If you are new to a stage IV cancer diagnosis, it can seem confusing if your care team doesn’t seem to have a sense of urgency to remove your primary tumor. However, studies show that removing the primary tumor is not associated with an improvement in quantity or quality of life.

The focus is almost always on treating the metastases first. If you were to focus on removing the primary tumor, surgery recovery usually requires being off chemotherapy — which would leave the metastases untreated and at risk of growth or spread.

Also, in many cases, the primary tumor will shrink in response to chemotherapy. Plus, if surgery is planned for your mets, the primary tumor may be removed during this surgery too. Doing chemo first keeps disease stable during surgery recovery, until you can restart chemo as needed.

Am I eligible for surgery?

The liver is a complex organ with ducts, arteries and veins. So when making decisions about whether or not a patient is a surgical candidate, surgeons take many factors into consideration. Ultimately, the goal is to conserve the essential blood flow and structures, as well as a sufficient remaining liver remnant (typically at least 30%).

Surgeons can remove an entire lobe, tissue across lobes, one or more segments, or just a wedge of liver. So if you have tumors on the outer sides of the liver, they’re easier to remove. Tumors deeper in the liver can be harder to remove.

Similarly, tumors that are grouped together are easier to remove in a single surgery than tumors that are spread out throughout the liver.

All in all, the number of liver tumors is less important than:

How spread out the tumors are (and therefore how much healthy liver will be left after surgery), and
How close the tumors are to vital structures like arteries and bile ducts

Some terms you might hear:

Portal vein — brings nutrient-rich blood from the digestive organs to the liver for processing
Hepatic vein — carries blood out of your liver
Hepatic artery — supplies oxygenated blood to the liver
Bile ducts — carry bile out of the liver to the gallbladder and intestine
Biliary tree — network of ducts inside and outside the liver that carry bile from the liver, pancreas, and gallbladder to the small intestine
Gallbladder — stores and releases bile. It’s attached to the liver, and is often removed as a part of liver resection surgeries

The liver is a highly vascular organ. This means that it has a lot of blood supply, with a lot of arteries and veins — and because of this blood flow, liver mets can grow fast. The flip side is they often shrink fast with treatment. More blood flow to an organ means cancer can get there more easily, but so can treatment. So hold on to your hat. Speedy growth means things may move really fast with assessment, planning and treatment.

There are some big decision points and information to be gathered that will help your team and you manage a diagnosis of liver mets. Nothing is set in stone with the treatment of CRC liver mets. There are lots of treatment options and additional ones may become available to you as you navigate your treatment plan.

Big factors to consider

There are two major factors that guide your treatment plan:

1. Are your metastases only in the liver, or do you have tumors elsewhere too?

Tumors inside the liver are called intrahepatic mets. Tumors outside the liver are called extrahepatic mets.

There are big differences in how your team will approach your treatment options in these two scenarios: only intrahepatic mets vs both intrahepatic and extrahepatic mets.

2. Can you have surgery to remove the liver metastases now or in the future?

Even if you are told you are not a surgery candidate, that means you’re not a surgery candidate RIGHT NOW. Down the road, other interventions and treatments may put you in the surgery category. Many COLONTOWNies in Liver Lover’s Lane were told they weren’t surgical candidates at first, but became so later. However, some people may never become surgical candidates.

If you are told no to surgery, you should ask your team for more information. Why isn’t surgery an option “now”? What, if anything, would need to happen to change your situation into a surgical one? This is a situation where getting a second opinion from a high-volume liver surgeon is especially important.

What “chemo for life” really means

Hearing “chemo for life” can be a pretty scary thing. But keep in mind a few things:

It doesn’t mean that you will be on the same chemotherapy drugs forever. Those can change over the course of treatment or you can go to “maintenance” chemo. There are a limited number of chemo lines available though, so you will want to work with your team to balance using each treatment line as long as possible, and align them with your goals of care.
Most people can take chemo breaks
Think of chemo for life as “chemo until something changes.” New treatments and options are evolving every day (as is your disease).

Patient perspective by Hillary

October 22, 2020, my world turned upside down, or so I thought. After an unexpected hospital stay in August, I went in for a colonoscopy to confirm I’d just had a bout with acute diverticulitis and nothing else.

I remember waking up in recovery and hearing the nurse calling my husband inside, the doctor wanted to discuss my results. I knew at that time things were not okay.

After he came in and sat down, my doctor walked in and sat down beside me. She then let us know she’d found a large mass and was 99.999% sure it was rectal cancer. She let me know she was referring me to oncology and colorectal surgery.

I cried walking out of there, full of fear and uncertainty, but my husband was quick to make light of it all and we laughed. (I can’t thank him enough for his unwavering love and support.)
Five days later it was confirmed adenocarcinoma of the rectum and I was sent into a whirlwind of scans, appointments and more testing. To say I had time to blink would have been a lie.

After meeting with several doctors and different teams. I buckled up for a long hard year. A year full of FOLFIRINOX, 30 rounds of radiation with Xeloda followed by LARS. October 2021 I had completed the entire treatment plan. My scans and bloodwork were clear. I was dancing with NED.

Unfortunately, that dance with NED was cut short. In January of 2022, I received a diagnosis of Stage IV terminal cancer. A blood clot in the portal vein along with 3 large masses and innumerable spots in my liver were present on the 3 month surveillance scans.

The doctor told me they didn’t discuss years at this time, and I needed to go on all the small or big trips I ever wanted. She would start me on chemo again to buy time.

Chemo again… something I couldn’t understand when 3 months prior they didn’t want to put me on it for clean up because my body had been through enough.

After my appointment, I sat in my car and cried. I just couldn’t accept what had been said. I rebuked that diagnosis. I went home and broke the news to my family.

The very next morning I began reaching out to COLONTOWN and was moved to LIVER LOVERS LANE. I started asking for suggestions and recommendations of doctors.

By the end of the day, I’d scheduled an appointment with 3 doctors in 3 states. One of them just happened to be less than an hour from me, so I met with him first.

As soon as I walked into my appointment, Dr. Abdalla had reviewed 15,000 images of me. He stated me he wanted additional images and asked me if I’d be willing to meet with another oncologist.

I told him yes because the oncologist who oversaw my treatment plan had moved to Arizona and I was not okay going back to the one who recently took over her patients.

So, I met with Dr. Jolly. He was amazing just like Dr. Abdalla. They both agreed on additional scans. After the scans, I met with Dr. Abdalla. He said he didn’t see anything anatomically preventing him from doing the surgery.

There was 1 mass in the upper right lobe and the 2 masses on the lower and right lobe were no longer there. We scheduled laparoscopic surgery.

On preop day, Dr. Abdalla decided to do open surgery so he could remove the blood clot and mass. I was too young to be on Xarelto for the rest of my life he said.

Surgery day arrived and as soon as he opened me up he saw the blood clot was an actual tumor in the portal vein. He used an ultrasound to find the best place to tie the veins off to prevent proliferation while performing the resection.

Turns out what was thought to be the size of a pizza slice removal ended up being a removal of 65% of the liver, gallbladder and surrounding lymph nodes.

The tumor in the portal vein is rare and complicated. Seen maybe 1-2 times in 20 years which is like 2-4 times in 2,000 resections. Thank goodness Dr. Abdalla had encountered it before and had even written about it.

During my post op, I learned I had a handicapped P53 and MET gene and tested positive for KRAS. Something the previous never found.

There were no targeted therapies so Dr. Jolly agreed with integrative care and I began holistic and functional treatment. I have continued with my protocols and care with Dr. Jolly and Dr. Abdalla.

Today, February 23, 2024, I celebrate my 2nd NEDiversary!!! I can’t thank those in this group who led me to my current team of doctors and taught me how to advocate for myself enough. I am forever grateful!

If you are not at peace or feel uncomfortable with what is being told to you, advocate for yourself! Your stage does not define you or your outcome!!!

Watch this video to learn more about second opinions:

Treatment options

As we mentioned above, two big factors really determine what treatments are available to you. Is the disease only in your liver or other places, too? And, can you have liver surgery or procedures now or in the future (or not at all?)

Let’s start with standard of care. If you have unresectable liver mets (mets that can’t be surgically removed) or mets in other places in your body, you’d likely start with chemotherapy (a systemic treatment). This strategy has been the most successful place to start.

If you only have mets in the liver, there are a range of options that might fit your situation. Keep in mind, not every cancer center will offer all treatments (and their recommendations will often align with what they can offer) so ask for details. If you weren’t offered something from the list, it could be that your center doesn’t have that treatment or that your disease is not yet controlled enough to gain benefit from some treatments. Just open a dialogue with your team to understand the reasoning and seek second opinions for potential additional options.

Now, let’s talk about local treatments. Local treatments are almost always done as part of a plan that includes systemic treatment (something that treats the whole body). Once cancer has spread beyond the primary site, there is concern there might be more spread that is not yet visible — so systemic treatment is important to not only help treat the liver mets but clean up also any other microscopic disease. This is used especially in cases where a person’s liver mets are currently unresectable.

This is where a really good multidisciplinary team becomes especially important. Having a liver surgeon, medical oncology, interventional radiology, radiation oncology and any other needed specialties Involved in your care together in a group discussion (remember that term MDTB?) can provide solutions that a single doctor may not.

Combined treatments have some special considerations. The best order of treatment may vary. Also, certain drugs such as Avastin need to be paused for as much as 10 weeks in total (before and after) some procedures. This is because Avastin raises your risk of bleeding post-procedure.

Chemotherapy is hard on the liver. If you have liver mets, your liver is not working at 100%, so your team will take this into consideration while managing your treatment.

Some oncologists may feel that local treatments may not add much to extending a patients life if they have extensive liver mets. It’s always a good idea to have an experienced liver surgeon or interventional radiologist who is guiding the addition of these techniques to your treatment plan.

We can’t say it enough – the most important thing to do when you first find out about liver mets is to get a liver specialist on board. They can help you choose the treatments that benefit you the most while minimizing risks.

To understand why you might be offered localized treatment first, check out this DocTalk:

Some acronyms you might hear:

OS — overall survival. The length of time that a patient lives after being diagnosed with cancer
PFS — progression-free survival. The length of time that passes before there is further growth or progression of cancer after a treatment or procedure.
Hepatic PFS — the length of time that a patient lives without progression in the liver

In this guide, we have categorized liver-directed treatment into 2 broad categories:

1) Established Treatments — These are treatments that have been around for some time and we know a lot about them.

2) Emerging Treatments — These are new treatments. Not as much is known about them, and they may be more difficult to access.

Though there are a number of treatment options, not all are applicable to all patients with liver mets. When you meet with a liver specialist, you can ask about each of these and have them explain which would be the preferred options for you (considering the number and location of your liver mets). You could make a list prioritizing these in a specific order and have your second opinion doctor review this list as well. This way, you could narrow the list down to the one or two strategies best suited for you.

Established treatments

What do we mean by established treatments? To be clear, we don’t necessarily mean standard-of-care. Here we go over treatments that are relatively well known and have established pathways to access treatment options.

We can classify these treatments into three broad categories: cutting it out, killing it locally, and inserting treatment into the liver.

Whew! We know this is a long list and it can be confusing to figure out the best options from what is clinically relevant to you. So chat with your care team, make sure you are seeing the right specialists, and seek second (or more!) opinions to learn more about what would be best in your case.

Cut it out

Click on an established treatment below

SINGLE-STAGE RESECTION

What is it?
A surgery that removes part or all of an organ or structure. It is also called surgical resection, or hepatectomy. This procedure removes a portion (up to ⅔) of the liver.

Who does it?
Hepatobiliary Surgeon

Typical patient considerations

Is this resectable initially? Sufficient liver remnant and no risk to blood/bilary structures.
Will it need two surgeries?
Do the liver mets need to be shrunk before a surgery is possible?

Resources to learn more
DocTalk: Optimal management of colorectal liver mets & HAI discussion: Dr. Padmanabhan

TWO-STAGE RESECTION

What is it?
Parts of liver with disease are removed in two separate surgeries.

There are two types of more complex liver resections:

Two-staged hepatectomy (TSH): Performed when it isn’t safe to remove all the tumors at one time, with a goal of preventing liver failure. The first surgery removes as many tumors as possible without impacting too much liver function. After some weeks, in which the liver can regenerate, the rest of the tumors are removed. It may be performed alongside other types of treatment.

Associating Liver Partition and Portal Vein Ligation for Stage Hepatectomy (ALPPS): A very advanced procedure done in two surgeries, it is reserved for cases where standard surgery would leave too little surviving liver.

Who does it?
Hepatobiliary Surgeon

Resources to learn more
DocTalk: Modern-day Management of Liver Metastases: Dr. Soares
DocTalk: Advanced Surgical Treatments for CRC Liver Mets, Dr. Hernandez-Alejandro

PVE (PORTAL VEIN EMBOLIZATION)

What is it?
Portal vein embolization (PVE) is not a treatment choice on its own, but it may be performed before a hepatic resection to enlarge the liver segments that will remain after the surgery. It redirects portal blood flow to segments that will remain. Typically is performed about 6 weeks prior to surgery.A procedure that aims to increase healthy liver to be sufficient for surgery. This is a possible pre-procedure to resection.

Who does it?
Interventional radiologists and/or liver surgeons

Resources to learn more
Video: Portal Vein Embolization (PVE) for Contralateral Liver Hypertrophy

Kill it locally

Click on an established treatment below

ABLATION

What is it?
Uses a probe with extreme temperature (hot or cold) to burn or freeze the tumor.

Can be performed along with surgery or alone. The goal is to destroy cancer cells without damaging the surrounding liver. Ablation can be completed in one session or multiple sessions. If done without surgery, ablation can often be completed with less sedation. It is often an outpatient procedure, with results comparable to surgery.

There are several types:

MWA, microwave ablation creates high temperatures that damage cancer cells.
RFA, radiofrequency ablation uses high-frequency electrical current that heats needles inserted into the tumor.
CA, cryoablation freezes the cancer cells with very cold gasses.

Less common and for specific patients:

PEI, percutaneous ethanol injection instills pure alcohol directly into the tumor, killing cancer cells. This is only used if thermal ablation is not an option.

Who does it?
Interventional radiologists and/or liver surgeons

Typical patient considerations

Number of tumors to ablate? Generally, more than three require multiple sessions.
Tumor size? Three cm maximum is ideal because the ablation zone is 2 cm larger than tumor.
Location? If tumor is near critical structures, it may not be a safe candidate for ablation.
The decision of what type of ablation is used may be made simply by what technology your cancer center has available to them.
Since repeat ablation is easier than surgery, would I be a candidate for repeat ablations, if needed?
If other treatments are recommended, what order will be followed?
Do you expect I will experience post-ablation syndrome with aches, fatigue and a low-grade fever?

Resources to learn more
DocTalk: How ablation can be a cancer terminator for liver and lung mets: Dr. Arellano

SBRT (STEREOTACTIC BODY RADIATION THERAPY)

What is it?
Stereotactic body radiation therapy (SBRT) is a very precise, non-invasive form of radiation therapy that delivers high doses of radiation to tumors while sparing surrounding healthy liver tissue. It is usually used on metastases 5 cm or smaller in 1 to 3 different sites. Some treatment centers might push beyond these parameters with careful planning. You must have sufficient healthy liver to get SBRT.

SBRT can be used when a tumor is deep or difficult to reach, such as near major blood vessels or bile ducts. It might be used to control tumor growth prior to trying for surgery.

Pre-treatment planning will include creating a custom body mold to hold you still during the treatment. Three to five 30 to 60 minute sessions are typically needed and can be done while on chemotherapy.

Keep in mind that if a metastasis reoccurs in the same location, it often cannot be retreated with SBRT since there can be too much radiation to a single area. However, in some special cases, retreatment with SBRT may be okay.

Who does it?
Radiation oncology team

Typical patient considerations

Insurance companies can be more reluctant to cover SBRT.
How many days of SBRT do you recommend for me?

Resources to learn more
DocTalk: SBRT for liver and lung mets: Dr. Miller

Insert treatment into the liver

Click on an established treatment below

HAI (HEPATIC ARTERY INFUSION) PUMP

What is it?
High dose chemo (FUDR, which is similar to 5FU) is given via a hepatic artery infusion pump, a device implanted under the skin in the abdomen, and connected to the hepatic artery through a catheter. It’s a similar idea to a port-a-cath. But it is significantly larger in size (hockey puck size under the skin, implanted above the liver).

It allows a much higher dose of chemotherapy to be administered directly to the liver (and protects the rest of the body from the drug). FUDR (the drug used in the HAI pump) is completely broken down in the liver, so no active drug enters circulation outside the liver. Usually done in conjunction with systemic chemo.

Who does it?
Liver surgeon implants the HAIP. Medical oncology manages the chemotherapy.

Typical patient considerations

Used after liver resection to reduce the chance of future liver mets (called adjuvant therapy).
It may also be used to shrink the tumor before surgery (called neoadjuvant or conversion therapy) to become surgical. It seems very helpful in many of these situations.
Usually for more extensive disease in the liver.
Use is usually limited to only patients without extrahepatic disease.
Does have toxicities that must be considered. For example, the HAI pump has the potential to damage the hepatic artery, resulting in scarring in the biliary tree. Potential leakage of chemo outside the liver could result in side effects in nearby organs, such as stomach ulcers.
There are lifestyle considerations to keep in mind — an HAI pump is a long-term implant, which needs to be filled directly with chemo or flushed at an HAI pump center every few weeks

Resources to learn more
DocTalk: HAI for metastatic CRC: Dr. Connell
DocTalk: Interview with an icon: Dr. Kemeny on HAI pumps
DocTalk: HAI pump trial: Drs. Cercek, D’Angelica, Lidsky and Maithel
Join the HAI PUMP PEOPLE group in COLONTOWN

Y90 (RADIOEMBOLIZATION)

What is it?
Y90 stands for yttruim-90, a radioactive form of a rare metal. It’s used in radiation therapy to treat some types of tumors.

The yttrium is injected into tiny glass or plastic beads that are inserted in to the blood supply of the tumor, delivering high doses of targeted radiation.

It can be used to treat part or all of liver, can be done multiple times on different parts of liver, and has the additional potential benefit of growing healthy liver for potential resection (though more slowly than PVE). This is a good option for when there’s disease spread in liver, can’t do before HAI. It’s done under sedation, often an outpatient procedure.

Who does it?
Interventional radiologist

Resources to learn more
DocTalk: Y90 for CRC liver mets — What patients need to know: Dr. Dayyani
Featured posts in COLONTOWN Mighty Y90 group

TACE (TRANSARTERIAL CHEMOEMBOLIZATION)

What is it?
Transarterial chemoembolization is a minimally invasive, image-guided procedure to treat liver mets. A dye is used to find the arteries feeding the tumors. Then chemotherapy and a drug to block the artery are injected. Used mainly internationally.

Who does it?
Interventional radiology or liver surgeon

Resources to learn more
Information on TACE

Keep in mind recurrence can be common

Liver mets often come back, especially in the first two years. Even if local treatments are initially able to get rid of liver mets, a large percentage of patients will likely experience a recurrence. However, because the liver can regenerate, the liver can often be retreated if recurrences do occur.

As you are planning out treatments, think about this factor in your long term plan. Early treatment decisions can affect your eligibility for treatments down the line, if you end up needing them. For example, if you get Y90, you can’t have a HAI pump in the future. Also, if a HAI pump damages your biliary tree (a risk of that treatment), you would not be able to get any other treatment in that area. Then you may need to consider a liver transplant.

However, it’s important to note that the most potentially effective treatment for you now is the priority.

Emerging treatments

We just went over established treatments, and now we’ll look at some of the latest options. The newest procedures may not be available at many centers, so be sure to ask at yours. With all treatments, what works well for one person may not be the best option for the next.

As these treatments are emerging, we don’t know as much about them compared to treatments that are much more well-established.

Finally, insurance coverage can be tricky for newer treatments. If you encounter problems, ask your treatment team for help and reach out in the COLONTOWN online support groups for advice. Many COLONTOWNies have overcome these barriers and can give you advice.

Click on an emerging treatment below

HISTOTRIPSY

What is it?
A relatively new, non-invasive procedure authorized by the FDA in 2023 that uses precisely targeted sound waves to destroy cancer tissue in the liver.

How does it work?
A wand outside the body sends high-intensity sound waves that create microbubbles within the tumor. The bubbles rapidly expand and collapse, which breaks down the tissue at the cellular level.

What are the benefits?
Histotripsy doesn’t require incisions, radiation, or needles. It also doesn’t create heat or ions that damage healthy DNA. The procedure can be used to treat patients who aren’t eligible for surgery or other ablation techniques.

How do I monitor my disease?
Doctors use ultrasound imaging to locate the tumor, monitor the treatment area, and adjust for better results.

What does recovery look like?
The destroyed cancer cells leave behind a harmless liquid that the body’s natural drainage systems absorb. The immune system may also be stimulated to recognize and destroy any remaining cancer cells.

Other considerations
Keep in mind, if ablation is not working for you, histotropsy is not going to be a curative solution. Histotropsy is basically just a way to do the same thing with less damage to the areas around it. Although there are many ways to treat liver tumors, unfortunately for many techniques, if one doesn’t work, it’s likely that other similar ones won’t work either. At the end of the day, all of these treatment techniques destroy tumors. Always consult with your surgeon to see if new techniques are applicable to you.

How can I get it?

Check out our Liver Lover’s Lane group for more information. Join the public Facebook group “Histotropsy Interest Group.” It isn’t part of COLONTOWN but is specific to this treatment.

To find a center that offers it check out this website.

More centers are purchasing the necessary equipment, so this list will grow. However, make sure you ask how many procedures your center has completed as this is such a new treatment. In general, it’s preferable to have complex treatments performed at high volume centers.

Insurance coverage for histotropsy may vary. If you are a candidate and insurance denies coverage, ask your treatment team for help. Also, ask for advice in the online COLONTOWN support groups as others have overcome this barrier successfully.

Resources to learn more
DocTalk: Multimodal Management of Liver Mets: Dr. Rocca
DocTalk: Histotripsy for mCRC liver mets: Dr. Hernandez

IRE (IRREVERSIBLE ELECTROPORATION)

What is it?
Irreversible electroporation is similar to ablation, but is non-thermal and has lower risk of causing bile duct or blood vessel injury. It is used more often for tumors near the central bile ducts. IRE uses a high voltage electrical current to destroy tumors without heating nearby tissue. NanoKnife is a common brand name of IRE systems used by treatment centers.

Requires general anesthesia.

Who does it?
Interventional radiologist and/or liver surgeon

Typical patient considerations
Similar tumor size considerations to ablations

Resources to learn more
Irreversible electroporation for colorectal cancer liver metastasis: a review

TRANSPLANT

What is it?
A liver transplant is a procedure where a patient with a liver diseased with tumors receives a healthy liver from a donor. A transplant may be considered for people with multiple large, unresectable liver mets and no extrahepatic disease (no mets outside the liver).

There are two types of liver transplants. The older style uses a complete liver from a deceased donor, where a living-donor transplant removes a portion of the liver from a healthy person to replace the diseased liver in the cancer patient. Because CRC patients almost always get a living-donor transplant, we will focus on that type here.

People who have a living-donor liver transplant seem to have fewer medical problems after the procedure than those who receive a liver from a deceased donor. And patient’s receiving a partial liver from a living donor also tend to have longer survival. The liver’s unique regenerative physiology allows for both donor and recipient to have a fully functioning liver.

Liver transplants are a new procedure for mCRC patients, so there is limited data and limited centers providing this procedure. Only 20-30 per year were completed in the U.S. in 2022 and 2023 for CRC patients with liver mets.

A transplant may be considered for people with multiple large, unresectable liver mets. There are a number of criteria both the cancer patient and the donor must meet to make a good match and qualify for the surgery. In addition to being medically appropriate, both parties must pass psychological screening, consult with social work to make arrangements for a longer hospitalization, and make sure their insurance will cover them. Although it can seem daunting and exclude some patients who would like to be considered, following a rigorous screening process dramatically improves the chances of a successful outcome.

What does recovery look like?

Recovery time in the hospital is usually about six days for the donor and ten days for the recipient. Because it’s a major surgery, recipients must plan to remain in the transplant hospital’s area for up to six weeks after discharge.

Other considerations

Many centers use a scoring system called an OSLO score or something similar. This system attempts to understand the liver mets biology and any other factors that could impact a patient’s response. (See Dr. Roberto Hernandez-Alejandro’s DocTalk video below for details of this scoring)
Tumors with BRAF mutations may not qualify for transplantation, but talk to your center.
Immunosuppressive drugs are required post-transplant. If you have extra-hepatic disease, or cancer outside of the liver, the suppression of the immune system may cause the cancer to spread more quickly.
Donors can be family or anyone who meets the criteria for your specific case.
Transplant centers can fill you in on their requirements.
As the transplant center screens potential donors, they cannot share details about those people with the recipient due to HIPAA restrictions.
Patients will need to be off of chemotherapy for several weeks prior to the transplant surgery.
Having a HAI pump can make it harder to transplant down the road, so talk to your team about the possibility of transplantation before getting a pump.
Recurrence of mCRC in the new liver is possible.

How can I get it?
Speak to your doctor about potential pathways to a transplant.

Resources to learn more
DocTalk: Liver transplants: Examining the evidence with Dr. Hernandez Alejandro
DocTalk: Transplant patients are in the house

PROTON THERAPY

What is it?
Proton beam radiotherapy is a type of treatment using protons—charged particles—rather than traditional X-rays (photons) to deliver radiation to cancer cells. Conventional X-ray radiation can damage healthy tissues as it leaves the body. Proton beams deposit almost all of their energy right at the target, minimizing the damage to tissues around the tumor.

Proton therapy may be used in patients with a limited number of liver metastases, especially when those metastases are not amenable to surgical resection or ablation. There are numerous critical structures within and around the liver, and these can be damaged by traditional radiation. The precision of this technology helps avoid dose-limiting toxicity to healthy liver tissue, which can be a major concern in conventional radiation therapy.

Other considerations

While proton therapy has great promise, especially in minimizing damage to healthy tissue, more research is needed to establish its superiority over traditional X-ray radiation for all types of cancer. In some cases, photon therapy may be just as effective or more cost-efficient so as mentioned earlier, insurance may balk at covering this treatment.
There may be limits on the size and number of liver metastases that can be treated.
Treatment planning for proton therapy may be more involved and slower than traditional radiation.

How can I get it?
Proton beam requires a very large and expensive piece of equipment called a cyclotron. As a result, only a small number of centers offer this technology and insurance may be reluctant to cover it. However, Colontownies have been successful in receiving proton beam coverage so ask for details in our online support groups. You can also solicit help from the team at your treatment center – they likely will have appealed cases successfully in the past.

In the U.S. the National Association of Proton Therapy keeps an up-to-date list.

Outside of the U.S. the Particle Therapy Co-Operative Group maintains a database of centers.

CLINICAL TRIALS

Cancer research is very active in the U.S. and around the world, and there could be trials applicable to your case. Searching for trials can be overwhelming and confusing but COLONTOWN has resources available to help you become more comfortable with the process.

In COLONTOWN University, you will find basic education on clinical trials, lists of questions to ask if considering a trial, practical tips for accessing trials, and thriving private support groups to help you weed through options.

Resources:
Learning Center: Clinical Trial Basics
Course: Searching Safari (for stage IV MSS patients and caregivers)

Patient perspective by Tim

My name is Tim. It was 2020, and I was 52 at the time. I was enjoying the pandemic at home in Tampa with my wife. We made the best of not going out by hosting our own game nights and dance parties, hiring our favorite local musicians to play a few songs for us and our friends on Zoom, and even rented an Airbnb place in Ft. Lauderdale right on the canal with a pool, bringing everything we needed for food and drinks. Our socialization was waving hello to the boaters on the canal, and we sat in the pool, listening to our music.

Despite the challenges, I was in overall good health and tried to stay active. Thanksgiving came, and it was one of the first bittersweet times since we had been staying isolated. We enjoyed getting together with friends and family during the holidays, but this year we were alone. Then, a pain in my right side started. Initially, I thought it would just go away, but instead, it got progressively worse. By Sunday, it hurt so bad that I walked over to the Urgent Care in our neighborhood. They weren’t exactly sure what it was, and all I heard as conjecture was “possibly a kidney stone.” They wanted me to get a CT scan, so I did first thing on Monday.

When I received the call to come in, I had a sense that something was up. I arrived and, without delay, the doctor came in with a single piece of paper and uttered the three words I will never forget, “You have cancer.” I remained calm and rational. I reminded myself that there was nothing I could do at this point to change the diagnosis. What mattered most was knowing what to do next. The doctor referred me to a gastrointestinal doctor friend of his, and within days, I had my colonoscopy confirming the cancer and the insertion of a stent.

At the beginning of my journey, I was amazed by the compassion shown by nurses and doctors. Maybe I didn’t fully grasp the severity of the situation, or perhaps I was overwhelmed with all the information, but their kindness and care touched my heart. I started my chemo treatment, and during this time, I received valuable advice from my first oncologist that I still pass on to others: always seek second, third, or even fourth opinions. Trust your instincts and don’t be afraid to advocate for yourself.

When a second oncologist gave me a grim prognosis, I refused to accept it as my fate. That was not my story! So, I sought a new team of experts at Moffitt Cancer Center. It was there that I was told I wasn’t a surgical candidate, but put on FOLFOXIRI until I started experiencing neuropathy and they switched me to FOLFIRI. I was seeing good results on my CT scans and decided to learn about other options through COLONTOWN.

This is where I learned about the potential for a liver transplant. Excited about this possibility, I had Betsy Post help me set up an appointment with the renowned Dr. Roberto Hernandez Alejandro at the University of Rochester Medical Center in New York.

The journey was not without its emotional ups and downs. Finding a living liver donor was challenging, but something extraordinary happened along the way. As I tried to help others by creating ShareMyLiver.com, more people stepped forward to be my potential donor. It was a powerful reminder that when we extend kindness and support to others, it comes back to us in unexpected ways.
With the love and support of a selfless donor named Beth, I underwent the life-changing transplant surgery.

Recovery was tough, but I kept pushing forward, embracing the new lease on life that had been given to me. My first post-transplant scan brought incredible news – “Your new liver looks beautiful.” I am now officially NED – no evidence of disease.

Through this challenging journey, I’ve learned valuable lessons. First, be your own advocate. Trust your instincts and pursue the treatment that feels right for you. Second, always believe in yourself and the power of hope. And lastly, regardless of your beliefs, be open to the love, energy, and support offered by others. Gratitude is a powerful force.

When you find yourself in a challenging situation, with the odds seemingly stacked against you, always remember this: you are not just a statistic. You are an extraordinary human being, possessing boundless potential to achieve the unimaginable.

Want to learn more about clinical trials?

If you are looking for discussions about liver mets trials, try joining our liver-focused support groups.

Then do a search in each group for the word trial or trials:

Liver Lovers Lane
The HAI Pump People
Mighty Y90
Transplantation Station

We also have several support groups dedicated to trials:

In Tom’s MSI-H Clinic, we discuss treatments and trials for MSI-H patients
In Tom’s MSS Clinical Trials, we chat about trials open to mSS patients
In Tom’s NIH Lounge, we discuss trials run by the National Institute of Health (NIH)
In TOM’S CELL THERAPY TRIALS CLINIC, we discuss cell therapy trials including: TIL, CAR-T, TCR, and NK

Want to join? Fill out the registration form here.

Building a care team

As you spend more time in the COLONTOWN you will notice that many patients seek second, third or more opinions as they build a treatment plan.

One criteria is looking for a high-volume provider and team – current research indicates the more patients like you your team sees and treats, the better your outcome may be. Increasing subspeciality training is usually better. Ask your specialists, especially your surgeons, how many CRC patients they work with annually, how many liver resections they successfully complete per year, and how long they have been doing this work. It is worth going to a high volume center for surgery, even if you have to travel. Remember, chemotherapy can be given closer to home in most cases.

In addition, some people utilize specialists at multiple cancer centers and ask these experts to coordinate their care across systems. This can be a bit more complicated but can offer you an opportunity to select the best practitioners in each speciality. Remember that the best doctor for you may not be the best for someone else. Not only should you look for expertise, but communication skills, willingness to learn and treatment philosophy matter just as much. These are people with whom you are trusting your life and will spend a lot of time, so pick them with that in mind.

When patients are asked what made them choose a particular doctor or center, they often say they really trusted that person or group the most. There is an element of personal choice in all of this. However, a few characteristics that are positive indicators include doctors who admit if they don’t know something, who communicate well with their colleagues, and who “stay in their lane” of speciality – in other words, medical oncology shouldn’t determine a surgery plan or vice versa. The specialists should work together through a multidisciplinary tumor board.

The goal is to develop a customized plan for your situation. And the priority is YOUR best interest.

Key questions to ask

Here’s a questionnaire to use at second opinion appointments:

What to ask during your second opinion appointment

Life with liver mets

Monitoring

There are people where you get rid of liver mets, so then you focus on handling other mets.

ca 19-9 and CEA are general biomarkers, but can provide some insight into what’s happening in the liver (if you only have liver mets).

Link out to the content on other biomarkers.

Labs — the Liver Main Four

Here are some labs that are commonly used to see how your liver is functioning. All four of these are usually included in standard blood work. Every patient will get these tests as part of a standard panel.

Your liver is being very taxed from chemotherapy and other treatments. It’s important to note that all four of these labs may be elevated somewhat when you are in active treatment. Remember “normal” ranges for labs are based on people without cancer. Like many other labs, dehydration can also impact the results. However, if you are not in treatment and are not significantly dehydrated, seeing these numbers rise can be a sign you need more testing. They may or may not be impacted by liver mets so they shouldn’t be relied on to understand what’s happening with your disease.

If these four labs are out of range for what is expected for you, your doctor may also recommend some additional lab work.

This information can help you assess your general liver health, whether or not you might qualify for a trial, and as your disease progresses, these values can be helpful to keep track of.

Your team will know what labs to focus on throughout the process. It’s important to note that these labs tell you about your liver health, but do not provide direct information about the extent of your metastases.

AST (aspartate aminotransferase)

AST is an enzyme (something that speeds up chemical reactions in the body, such as food breakdown or molecule building) that is found mostly in the liver, but it’s also found in muscles and other organs in your body. When cells that contain AST are damaged, they release AST into your blood. An AST blood test helps diagnose liver damage or disease. There are a number of factors that can elevate AST, so your doctor will know what level would be considered abnormal for your specific case.

ALP/ALK (alkaline phosphatase)

ALP or ALK is an enzyme found in many parts of the body, including the liver, bile ducts, and bones. An abnormally high level may indicate liver problems.

ALT (alanine aminotransferase test)

ALT is an enzyme found primarily in the liver, but can also be found in other tissues like the heart, kidneys, and muscles. When liver cells are damaged, they release ALT into the bloodstream, which can result in elevated ALT levels.

Bilirubin

Every year, about half a million people in the US have their gallbladder removed (called a cholecystectomy), usually due to pain and inflammation caused by gallstones. An imbalance in the chemicals in bile are the usual cause of gallstone formation. But CRC patients may have gallbladder problems related to tumors. A tumor can grow into the bile duct or can push on the outside of the duct, blocking the flow of bile.

Bile is a yellowish-green, thick digestive fluid produced by the liver and stored in the gallbladder that helps break down fats and carry away waste. This substance is made from a variety of products including bilirubin – a waste product from the breakdown of red blood cells. Bilirubin is toxic to the body and should be removed, but a tumor blocking bile from leaving through normal processes will cause it to build up in the liver.

Eventually this raises bilirubin levels in the blood and is detectable in labs. This type of blockage can cause liver failure. About 10% of CRC liver metastases involve the bile duct.

A bonus lab — is ctDNA or MRD testing right for you?

Once you have mets removed, ctDNA testing (such as Signatera) happens to be pretty sensitive to liver met recurrence. This is called minimial residual disease (MRD) testing. Ask your team if this test is available in your area.

Content

How to use this guide

Does it apply to me?
Do you offer it here?
Who is an expert that I can talk to about this technique?

These are all specialized procedures, so you should not take someone who does not practice the procedure for granted.

Building a treatment plan

Note here about ordering treatments to make sure that you maximize the number of treatments that you are eligible for. For example if you get Y90, you are not eligible for an HAI pump.

Looking for additional resources?

Guide

All about skin issues

Colorectal cancer treatments come with unique potential side effects. Changes in your skin and nails are quite common across many treatments — and they can range from mild and annoying to severe and affect treatment plans.

So what potential problems might you experience? And what can you do to feel better?

Read on to learn more about types of potential skin reactions, signs and symptoms you should know, and how to describe your symptoms to your doctor.

We also include a range of suggested solutions from COLONTOWN members: What treatments could help, what to avoid, and practical tips for living life while taking care of your skin.

The big picture

Select a treatment:

Found in

FOLFOX
FOLFOXIRI
FOLFIRINOX

Common issues

Pain, tingling, burning, numbness
Sensitivity to hot objects
Blistering, swelling, peeling skin
Callus formation, painful cracks in the skin
Mouth sores, oral mucositis
Skin color and mucous membrane color changes in people with darker skin
Hand foot syndrome

Found in

CAPOX
XELIRI

Common issues

Hand foot syndrome
Pain, tingling, burning, numbness
Blistering, swelling, peeling skin
Callus formation, painful cracks in the skin
Mouth sores, oral mucositis
Skin color and mucous membrane color changes in people with darker skin

Common issues

Hand foot syndrome
Pain, tingling, burning, numbness
Blistering, swelling, peeling skin
Callus formation
Skin color and mucous membrane color changes in people with darker skin
Rash with:
– Itching
– Sores on lips, in mouth, nose
– Small blister-like bumps
– Pain or tenderness
– Redness

Found in

Encorafenib (Braftovi)

Common issues

Dry, itchy skin
General rash or acneiform rash
Secondary skin cancers

Found in

Trifluridine + tipiracil (Lonsurf)

Common issues

Occasional itchy rash
Dry skin
Flushing of skin

Found in

Intensity-modulated radiotherapy (IMRT)
Stereotactic-body radiotherapy (SBRT)

Common issues

Radiation dermatitis:
Dry, itchy, flaky skin
Hair loss in treatment area
Blistering or peeling skin
Painful skin
Skin color and mucous membrane color changes in people with darker skin

Healthy skin habits

No matter what treatment you’re on, here are some rules of the road to support your skin and nail health:

Start good skin care before treatment begins. This may not prevent all problems, but it gives you a better starting place
We know it’s really hard, but don’t scratch. It can lead to more itching and infection later on
Avoid hot water — that means try not to take long showers, don’t wash your hands (or dishes) excessively, and stay out of hot tubs
Cool compresses or refridgerated skincare products may be soothing. One exception is you are on oxaliplatin and experiencing cold sensitivity
Pat, don’t rub your skin dry. Avoid friction from clothing or repetitive motions
Clean your skin with soap-free gentle cleansers
Moisturize! Choose gentle, no-alcohol, fragrance-free products and aim to use them twice a day. Pay close attention to feet, hands and other sensitive areas
Use cotton-lined gloves when cleaning, washing dishes, or gardening
Keep nails clean and trimmed. Don’t cut or bite your cuticles
Keep an eye out for signs of infection — redness, pain, swelling, pus heat. Let your care team know if you suspect an infection is starting
Try to stay out of the sun. If you want to take an afternoon walk, use good sun protection, such as wide-brimmed hats, long sleeved light shirts, and SPF 50+ gentle sunscreen. Test the sunscreen on a small area before slathering your entire body!
Drink plenty of water
Consider using a humidifier if the air in your home is particularly dry. The ideal humidity range is 40-60%, but you might me more comfortable at the high end of that
As always, keep talking with your care team. Let them know about any skin changes you’re experiencing. At the bottom of this page, we have a guide on how to document and describe your skin reactions to your care team

Rashes

When you’re being treated for cancer, patients commonly report getting rashes. Issues range from mild to severe — but any sort of rash should be monitored. Our skin is important. It’s our barrier between us and the world, and taking care of it can make you feel a lot better while on treatment. Some rashes are more generally connected to chemotherapy, but other treatments can cause very specific rashes, such as EGFR inhibitors and regorafenib (Stivarga). Below we go over all of this and how to solve some of these issues. But let’s start with the basics.

EGFR inhibitors

If you’re taking cetuximab or panitumumab, you may be very familiar with what’s known as the “EGFR rash”

What is the EGFR rash?

The rash patients experience on EGFR inhibitors is quite different than other rashes. It often shows up as an acne-like rash on the face. You may feel like you’re back in middle school! Reactions can show up just about anywhere on the body, including the scalp and genitals.

Rashes can range from mild to severe, or you may not experience them at all. Some patients report that the rash is worse in the first three to six months of treatment, and it can begin as soon as two to four weeks into treatment.

What are the symptoms?

There are a variety of rashes that patients can experience, but two of the main types are called — get ready for some hard-to-pronounce names — follicular rash and acneiform rash. We tell you this because your doctor might use these terms to describe your rash.

Follicular rash

Also called folliculitis. This rash looks like small, red, itchy bumps on areas such as your face, scalp or upper body. Often these bumps will lead to the next form of rash, called acneiform.

Acneiform rash

Also referred to as papulopustular rash. This rash may make you feel like a teenager again! Red bumps and pus-filled pimples can be found most commonly on the face, scalp and upper body, but can sometimes be found in other areas. Depending on the severity, it may cause redness, inflammation, pain and itching — but don’t be tempted to treat this rash with standard acne products! We go into this in more detail below.

Acneiform rash is often called EGFR inhibitor rash because it is very common when taking cetuximab or panitumumab. Studies show that more than 65% of patients — and an even higher percentage of men — on these drugs will experience some form of this rash, starting within the first four weeks of treatment. Some other drugs such as encorafenib can cause it as well.

We don’t completely understand why this acneiform rash starts, but it appears that EGFR inhibitors block a protein that can lead to skin inflammation and ramp up oil production.

What levels of severity are there?

Your oncologist might use a grading scale of 1 to 4 to monitor your rash and skin problems. This helps them see how things are changing over time.

How do I treat or prevent it?

First of all, it’s important to let your care team know if you start seeing any type of skin issue. Telling your doctor early can help them keep track of how the rash progresses, and help minimize unwanted side effects.

Over-the-counter options

Gentle skincare is key to helping with treatment-induced rashes. Avoid skin products that contain alcohol or fragrances.

Just because your rash looks like acne, doesn’t mean it should be treated the same way! You may be tempted to try standard over-the-counter (OTC) acne treatments containing salicylic acid, but they are harsh and you should avoid those. Traditional acne products have drying ingredients including alcohol — which should never be used on an EGFR rash. Instead, you want to choose alcohol-free products that add moisture to your skin.

Many COLONTOWN members recommend moisturizing products like:

Reconval B6
Cerave
Aveeno
Cetaphil
Aquaphor
Eucerin
Udderly Smooth
Sween 24
Creams with Vitamin K1

With EGFR rashes, some people find rubbing Milk of Magnesia on the areas can help. It’s inexpensive and isn’t harmful, but it can be a little messy. Others have found the occasional use of Afrin nasal spray mixed in gentle lotion can help reduce redness.

Also remember that refridgerating whatever OTC products you use may help with itching and burning feelings.

Searching COLONTOWN groups for terms like “rash,” “redness,” “EGFR rash,” and “skincare” will take you to many detailed discussions on skin remedies. You can even jump into the discussion yourself! Join here.

Prescription options

Your doctor might prescribe you topical (cream or lotion) or oral (pill) steroids and/or antibiotics to treat this rash. These drugs are meant to reduce inflammation, tamp down itching and burning, and help prevent or treat an infection. Most commonly, you may get antibiotic pills like doxycycline or monocycline.

There are a range of options available, so continue to work with your doctor to try out different solutions and find the best option for you. For instance, a steroid cream may help. You may consider bringing up a prescription for a steroid cream called clobetasol propionate with your doctor. This cream is used to treat eczema. It reduces swelling, redness, itching and rashes.

Some patients have been prescribed isotretinoin (Accutane) or triamcinolone acetonide cream. But be careful to NOT use over-the-counter acne products as these may actually make things worse.

Be aware that if you use a steroid cream or oral drug for an extended period of time, don’t stop taking it suddenly. You should slowly reduce your use, or else you may have a rebound of your rash. You can talk to your doctor about the best way to do that.

Knowing how common these rashes are, many treatment centers like to start you on a prescription before the rash starts to help prevent it from getting too bad. Work with your care team to decide which route is best for your situation. Sometimes more severe skin problems will involve a dermatology referral.

When might side effects go away?

Symptoms often lessen when treatment ends. Sometimes it takes a while for you to get back to where you used to be. Other times skin side effects may be something you deal with in the forseeable future. Your skin has gone through a lot, so be gentle with it and patient with the recovery process. Keep notes on how you’re recovering, and keep your care team up to date. If you have any questions about your recovery, work with them to find a solution that is right for you.

Does EGFR rash mean the treatment is working?

You may have heard online that getting a severe skin reaction while taking an EGFR inhibitor is actually a good thing — as it suggests the treatment is working as intended. While some studies have shown that getting a rash from EGFR inhibitors, no matter if it is severe or mild, might mean you are responding well to treatment, everyone is a bit different. Also, if you were given a prescription before starting treatment to prevent the rash, it will affect whether or not the rash occurs.

The bottom line is, a rash or lack of rash can’t tell us much about whether or not your treatment is working. We recommend following up with your care team if you have questions about your specific situation, and scans will help determine if the EGFR inhibitor is working for you.

Importantly, DON’T stop your EGFR inhibitor if you get a rash, it can actually be a good sign. And if you don’t get a rash, don’t jump to conclusions.

Patient perspective from Jeff

My name is Jeff and I was diagnosed with colon cancer in 2017. I have done multiple surgeries, clinical trials and 86 rounds of chemo. In Dec 2023, we decided that Vectibix was my next best option for chemo treatments.

Before I started, my doctor talked to me about the potential side effects. The main issue that people report is a skin rash on the face and upper torso.

The interesting thing about the rash is that there are studies showing that the worse the rash, the better the chemo is working. For the first two weeks after doing the chemo, it was a strange feeling of dreading a skin rash, but also hoping for it at the same time.

The doctor had told me ahead of time that there were drugs they could give me that would help with the rash, but she preferred to wait and see how bad the rash is before taking the extra meds. I agreed. I was not excited about a skin rash, but I did want to see how bad it got before I added more medicine.

After the first round, I did not notice much for over a week. I had my typical bouts of nausea and fatigue, but that was not surprising since I was also taking irinotecan.

After about a week and a half, I started to see the first signs of the rash. It was mainly pimples on my face. I was a little self-conscious about my appearance. But surprisingly, unless you were in really bright light environments, most people did not notice. I could point out the rash and then people could see it.

But before that most people were not aware. To them, it just looked like normal acne that anyone could deal with.

About two weeks in, I started to get the rash on the top and back of my head. They were blister-like and very painful. I had not considered that aspect of the rash. It was painful to lay down, even with a pillow.

I had a hard time sleeping. Every time I moved, it would hurt on my scalp.

We got some different shampoos to try to help. I used Scalpicin, and it hurt/burned while it was on, but after would feel better. But only temporarily. I used lotion with 5% hydrocortisone on my face. Overall, I did not have much trouble with itching. My main problem was the painful sores on my head.

When I went back to the doctor, she saw the rash and immediately said we should start a doxycycline antibiotic. It is a twice a day pill. After a few days on the antibiotic, I started to feel relief. The rash was still there, but the sores were not nearly as painful. I was very glad that the antibiotics were helping. I was truly nervous about whether I was going to be able to continue on Vectibix because the sores were so painful.

I have also noticed hair falling out. My doctor did not think that was a typical side effect from Vectibix, but I think it could be from the rash. In early January, the hair on my head fell out in clumps. And I do not have much hair on my arms or legs. The hair on my head did grow back and has not fallen out again.

It is now May 2024 and I have been on Vectibix for 6 months. At this point, the side effects do not bother me. I have to be very careful about being in the sun. And now that the weather is warming, I make sure to have sunscreen if I am going to be outside any longer than 10 minutes. I can feel the sensitivity in my skin when I am in direct sunlight.

For 6 months, this chemo regimen seems to be working. My CEA dropped sharply and has held steady.

My cancerous lymph nodes have not enlarged. I can deal with a lot of side effects if I feel like the treatment is working.

Recent research

Additional treatments for EGFR rash are currently being studied:

LUT014 for the Reduction of Dose-Limiting Acneiform Lesions Associated With EGFRI Treatment of mCRC

NCT04759664

Important information about encorafenib (Braftovi)

Braftovi has some of the same rash risks as many other CRC drugs. But this drug is unique in raising the risk of new skin cancers (called cutaneous squamous cell carcinoma or basal cell carcinoma). Your doctor should help you monitor for new or changed warts; skin sores or reddish bumps that bleed or do not heal. Monitoring often starts before your first dose, then every two months on treatment and for up to six months post-treatment.

Sometimes encorafenib is given alongside cetuximab. If so, your risk of dermatitis acneiform or “EGFR rash” is increased.

Regorafenib (Stivarga)

Not all patients taking regorafenib get a rash. Patients may find that the regorafenib rash is not as noticable as the notorious EGFR rash, but it has some distinct features and can cause a lot of pain.

What are regorafenib rashes?

Some people describe regorafenib rashes as feeling like a severe sunburn pain. The rash might not look that bad from the outside, but can be pretty uncomfortable.

What are the symptoms?

Here are some of the ways patients describe this rash:

Itchy
Sores on lips, in mouth, or nose
Pain or tenderness
Redness
Small blister-like bumps

As with any of these skin reactions, involve your care team from the beginning. They may refer you to a dermatologist if you need more support. Below is an image of what a regorafenib rash may look like (viewer discretion advised!)

Regorafenib rash

How do I treat or prevent it?

Clobetasol can be helpful for hand foot syndrome caused by regorafenib. Ask your doctor about treatment options.

When might side effects go away?

Patient perspective from Julie

I was on Stivarga for 2.5 years as part of a combination clinical trial. When I started, I was told the biggest side effect of the combo was a rash (an intensified version of the rash some get on Stivarga alone). While it didn’t sound as painful as other rashes I had gotten, others had to stop the trial because of the rash which I really didn’t want to be the case. I woke up every morning those first few weeks anxiously checking for a rash. Turns out, I got no rash at all. Goes to show that everyone’s different.

In terms of other ‘skin stuff,’ the effects were pretty mild which could’ve been due to the relatively low dose I was on. But, I did have very sensitive skin that would tear easily. Even certain bandaids would rip my skin off. I also had some Hand Foot Syndrome with burning in my hands and heels. My hair also got extremely dry & coarse to the point of breaking off. I had Einstein-like wisps on top of a Brillo pad. Not the look I sent in for my high school reunion ‘look at them now’ picture, but luckily was fleeting. Skin all back to normal now too.

Radiation

What are radiation rashes?

Radiation can be hard on the skin. After repeated treatments, your skin may be sensitive and have a host of skin problems.

What are the symptoms?

Some people may experience burning, rashes, redness, dryness, flaking and skin discomfort where you get your radiation treatment. This is called radiation dermatitis.

When can it show up?

It often takes a while for these side effects to become an issue. These symptoms usually don’t show up until the last week or two of treatment (if at all).

How do I treat or prevent it?

Your radiation team may be able to provide you with skin care product samples, but the same principles apply in all these situations – cleansing and moisturizing with mild, non-fragranced products is best. Also, don’t rub the areas – pat them dry and treat them gently. Be careful not to over-moisturize prior to going for your radiation appointments. You want to make sure any lotions are completely absorbed into the skin. Some people find using a fan on the area to cool it may reduce skin discomfort. Make sure your team is looking at your skin regularly and let them know if you experience changes.

Radiation rashes happen because radiation treatment can damage your skin’s microbiome (the healthy bacteria that live on your skin). A good way to prevent this is to wash the skin in the path of radiation with antibacterial soap and water before each treatment. Importantly, if you start to get a rash, stop using antibiotic soap as it may make things worse. One option with proven efficacy for breast, head and neck cancer is a plastic film called Mepitel. This film is applied before treatment then kept on the skin for two weeks afterwards. Although we have not seen it used in rectal cancer radiation specifically (and it might be hard to place on your buttocks!), you can ask your care team if it could be applied in your situation for metastatic radiation. Importantly, do not delay radiation treatment to wait for this film or other interventions.

When might side effects go away?

Radiation rashes can extend beyond treatment by several weeks. They usually resolve within a month of completing treatment. Sometimes it takes a while for you to get back to where you used to be. Other times skin side effects may be something you deal with in the forseeable future. Your skin has gone through a lot, so be gentle with it and patient with the recovery process. Keep notes on how you’re recovering, and keep your care team up to date. If you have any questions about your recovery, work with them to find a solution that is right for you.

Hand foot syndrome

Hand foot syndrome is a common side effect of some chemotherapy drugs. It is known by several names — Hand Foot Skin Reaction (HFSR), Hand Foot Syndrome (HFS) or Palmar-Plantar Erythrodysesthesia (PPES). Your doctor may refer to any of these names, but they all mean the same thing. For our purposes, we’re going to call it hand foot syndrome.

What is hand foot syndrome?

HFS is a chemotherapy side effect that can cause redness, swelling, painful cracks, blistering, or peeling of the palms of the hands and soles of the feet. Symptoms of HFS may present differently for individual patients. Your skin tone and the health of your skin prior to treatment can also play a role in how HFS shows up for you.

What are the symptoms?

Every patient is different. If you’re concerned about HFS, talk to your care team.

Some symptoms of mild to moderate HFS are:

Calluses or blisters on the palms of the hands or the soles of the feet
Feeling like your skin is tight
Burning or tingling sensations
Tenderness to touch
Swelling or redness that appears to look like a sunburn
Redness (usually the entire skin surface, as opposed to in spots)
Hyperpigmentation (skin color darkening)

Severe HFS symptoms include:

Blisters
Ulcers or sores
Cracked, flaking and peeling skin
Difficulty walking
Difficulty using the hands to do things like buttoning a shirt
Mild to severe pain
Some people will temporarily lose their fingerprints from HFS (making opening your phone with your fingerprint hard!)

What can cause it?

Some CRC treatments known to cause HFS are capecitabine (Xeloda) and regorafenib (Stivarga). Capecitabine is part of CAPOX and XELIRI treatment regimens. It also infrequently can be caused by IV 5-FU, which can be found in common treatment regimens like FOLFOX and FOLFIRI.

What might it look like?

Wondering what this might look like? Click the boxes below to see some examples. Just a heads up, the pictures show both mild and severe rash examples.

Redness, swelling, pain, peeling or blistering

Hyperpigmentation

When can it show up?

Everyone is different. If you’re on a targeted treatment, you may notice HFS developing as early as in the first six weeks of treatment. If you are on chemotherapy, HFS may not manifest for two to three months. If you notice HFS starting to present itself, or if you notice your symptoms worsening, it’s important to notify your care team.

What levels of severity are there?

There are three grades of HFS that your doctor may use to diagnose and monitor your symptoms. Below are some example images. Note that the pictures show both mild and severe rash examples.

Grade 1

Grade 2

Grade 3

How do I treat or prevent it?

First of all, review the healthy skin habits guidelines at the top of this page.

Here are some other suggestions from COLONTOWN members:

Try placing ice packs under the hands and feet while receiving chemotherapy, with the approval of your care team. Do not apply ice directly to the skin.
Keep your hands and feet cool for several days following treatment. This can be done by using ice packs (do not apply directly to the skin), a cool towel wrapped and your hands or feet or running your hands and feet under cool water for 15 minutes at a time several times a day.
Limit the use of hot water that comes in contact with your hands and feet, such as while bathing or doing dishes. If hot water is required, wear gloves to protect your hands. Do not use vinyl directly on the skin (it traps heat). Consider wearing soft cotton gloves underneath.
During treatment, avoid activities and clothing that rub the feet, such as jogging, aerobics, gloves, and tight socks and shoes.
Use natural cleaning and laundry products.
Avoid pressure to the hands and feet, including pressing against hard objects such as gardening tools.
Keep your hands and feet well-ventilated to allow air to freely hit your skin. You can do this by wearing loose-fitting shoes. Do not walk barefoot. The use of soft socks or slippers can prevent friction to the feet.
Remove thick nails and calluses on the hands and feet prior to starting treatment. You can see a podiatrist or dermatologist to get these removed.
Applying henna paste on skin can help reduce HFS for some people. Ideally you should start this before hand foot syndrome starts, but if you have broken skin, do not use this treatment. You can purchase henna at a south asian grocery store or online. There are two types of henna, black henna and green henna. Make sure to use green henna, which is 100% henna plant without any additives. Make sure to cover your entire palms and soles of the feet. This will dye your hands and feet a dark brown or red, and the color will stay for around two weeks. Use plastic gloves or socks to make sure you do not stain your clothing or furniture, because stains are permanent.

Over-the-counter options

Try exfoliant creams containing urea (such as Eucerin 10% urea), salicylic acid, or ammonium lactate, which can be purchased over-the-counter or provided by your doctor.

Keeping your skin moisturized throughout the day is important. Look for fragrance-free, alcohol-free options. Products made for eczema are often good choices.

Some COLONTOWN members recommend products like: Aquaphor, Aveeno, Bag Balm, Cerave, Cetaphil, Eucerin products (including Eucerin Repair Foot Cream with 10% urea), Udderly Smooth, Sween 24, CV Skinlabs, Neutrogena Anti-Itch Moisturizer, Reconval B6, or O’Keeffe’s Working Hands.

Some have had luck with oils such as coconut or almond, or CBD creams with menthol added.

Members recommend haircare products for itching, psoriasis or eczema such as Nizoral brand, Selson Blue, Head & Shoulders.

Here are some moisturizing and cleansing ingredients that COLONTOWN members commonly recommend:

Calamine
Calendula used for chapped or cracked skin
Lanolin nipple cream
Coconut Oil
Almond Oil
Vitamin E oil
CBD creams with menthol added
Creams with 10%+ urea, salicylic acid or ammonium lactate
Products formulated for eczema

And remember that larger stores may have generic store brands of some of these products that can be more economical.

Take care when choosing showering products. It’s best to stay away from fragrances, shower in cooler water, and take shorter showers. Moisturize immediately after you pat your skin dry. Products such as oatmeal-based cleansers, Nivea or Cetaphil wash might be good choices, according to many COLONTOWN members.

If you’re feeling pain, try ibuprofen (Advil) or naproxen (Aleve). Before taking any medications including over-the-counter remedies, chat with your doctor.

Check in about taking Vitamin B6 (pyridoxine) as it may help prevent HFS too. One important note, vitamin B complex found in multivitamins can interfere with capecitabine, so make sure to chat with your doctor before taking any vitamins or over the counter medications or supplements.

Prescription options

Some recent data suggests using a topical gel arthritis pain reliever diclofenac (Voltaren) might help prevent or treat HFS. Talk to your doctor about using this as a possible preventative measure.

Topical anti-inflammatories are often a good treatment for HFS. Prescription corticosteroid creams such as clobetasol or Ultravate work for many patients.

Lidocaine and other topical pain relievers can be used in the form of a cream or a patch placed over painful areas on the palms and soles.

When might side effects go away?

Symptoms of HFS typically subside and eventually go away completely following the end of chemotherapy or targeted treatments.

If HFS is seriously affecting your everyday life, speak to your doctor about whether they recommend a lowered dose of chemotherapy. In severe cases, chemotherapy may need to be stopped temporarily or permanently to allow your skin to heal. Letting HFS go on without addressing it may lead to skin infections, so manage this side effect as actively as you can.

You can find additional information regarding HFS along with patient experiences by joining COLONTOWN. Try searching for terms such as “skin” or “hand foot syndrome” to find specific suggestions. Join COLONTOWN here.

Skin cracking & nail issues

What are the symptoms?

Painful cuts and cracks that range in severity can form on the hands, feet, around the nails and even areas like the vulva or perineal area. These can sting and be very annoying and painful, and if left untreated, can lead to infection.

Cracks in the skin or nail beds can also lead to infections so it is really important to monitor them for signs of infection such as heat, swelling, redness, and pus. If you notice this, let your care team know immediately so they can help prevent it from getting worse.

What can cause it?

Dry, itchy, cracked and even bleeding skin can be seen alongside the EGFR rash side effect, or simply on its own.

What might it look like?

Your nails may become brittle, nail beds may change colors and your nails may have waves, lines, or indentations. Nails can separate from the nail bed, causing you to lose all or part of a nail, and nail growth can slow.

How do I treat or prevent it?

We might sound like a broken record, but gentle skin care and moisturizing is the best way to prevent or reduce the impact of skin and nail bed cracks.

Try liquid bandage or a clean, new tube of super glue to close cuts on hands and feet. Make sure to do this in an area with good ventilation, and be sure to not glue your fingers together. Once dry, protect your hands and feet with cotton gloves.

You may also ask for a prescription for a topical steroid called clobetasol propionate ointment from your doctor. This cream is used to treat eczema and psoriasis. It reduces swelling, redness, itching and rashes caused by these skin conditions. It’s a type of topical steroid medication (cream). Some people report it helps with cracks in hands and feet.

When might side effects go away?

In time, these problems should grow out if you stop treatment, but this can take a year or more.

Your skin has gone through a lot, so be gentle with it and patient with the recovery process. Keep notes on how you’re recovering, and keep your care team up to date. If you have any questions about your recovery, work with them to find a solution that is right for you.

Dryness & itching

Your skin goes through a lot in life — from teenage pimples to earning wrinkles with time. Cancer treatment can cause new and frustrating side effects, including dry and itchy skin. This can be particularly uncomfortable and frustrating.

What can cause it?

Oxaliplatin is one of the most commonly used drugs for CRC. Most people will take it at some point if they’re on a chemotherapy regimen. When we think about oxaliplatin side effects, most people think of neuropathy and cold sensitivity, but it can also cause dry, itchy and sensitive skin.

Irinotecan is another common medication used to treat metastatic CRC. Although it is mainly known for causing diarrhea, it can also cause relatively mild skin problems, including dry, itchy, and sensitive skin.

Trifluridine and Tipiracil (Lonsurf) is reported to cause itching, redness and rash in some people who take it. Please notify your care team if this happens so they can help determine if this is an indication of an allergic reaction or an expected side effect.

How do I treat or prevent it?

Our recommendations go back to the gentle skin care routine and healthy skin habits – don’t scratch, reduce exposure to hot water, treat your skin gently and moisturize often with unscented products for dry or eczema-prone skin.

If the itching is really bothering you, ask your care team about other OTC or prescription things that could help. Some find topical corticosteroids or diphenhydramine (Benadryl) creams to be helpful for itching.

As we mentioned above, some people experience cold sensitivity on oxaliplatin. So take care to avoid applying cold moisturizers if you are experiencing that side effect. There are plug-in lotion warmers that can be used to gently heat your product before applying.

When might side effects go away?

Weird things that happen

Cancer treatment impacts everybody and every BODY differently. It can cause some pretty weird things to happen to your skin, so know you aren’t alone if you’re left scratching your head. COLONTOWN members have reported the following (and numerous other odd reactions). They usually aren’t dangerous, but let your care team know if you experience them:

Changed fingerprints
Hair growth on face
Subcutaneous bleeding that looks like a rash but it’s a bruise
Black “ink” spots on skin and gums
Palms and feet turning grey

Our advice is always to let your clinical team know about any changes you notice. They can help you decide if they need direct attention or not.

How to talk to your care team

It can be hard to talk about skin rashes. They might be in a sensitive spot, or look a bit odd to you. However, learning to describe your concerns in detail will help your care team address problems more quickly and accurately.

And importantly, if you’re able to manage your rashes better, you have a better chance of completing treatment on schedule.

Here are some ideas to help you get your points across effectively:

Get comfortable with sharing

Show your partner, your family members, or your BFF. Some problems are in places you can’t see well, and having help monitoring issues is important. Plus, you can practice getting comfortable sharing with your care team.

Take pictures

It can be helpful to have a picture of your skin before you notice a problem. Then, later photos can show any changes or progression of rashes, moles or other concerns. This is especially important for people with dark skin, as doctors may find it more difficult to notice skin changes. Try taking some pictures from further away and up close, including a quarter or something else for size reference.

Think about when you noticed the problems starting

Sometimes side effects can be subtle at first. If a rash seems to be spreading, outlining the rash with a pen for later comparison can help to show how much and how fast a rash has spread.

Keep track of where on your body you find problems

Face, scalp, chest, stomach, back, arms, legs, hands, feet, or nails? On your buttocks or your groin? On your penis, vulva, anus, or peritoneum (the area between your anus and genitals)?

Learn language to describe how it looks

Has your skin changed colors — red, gray, black or other colors? Is it blotchy, or are there dots or areas of different colors? Are there bumps, blisters or swelling? If so, how large? Do they appear to be filled with fluid or are they more solid?

Describe how it feels

Is it painful or tender? If so, what makes it hurt? Does it burn or itch, feel raw, or hot? Is it numb or tingling? Does anything make that better or worse?

Describe the texture

Is your skin tight, flaky, scaly, peeling? Is your skin feeling thicker than usual? Is it oily? Dry or moist? Cracking? Are your nails changing texture?

Have the skin issues made it hard for you to do daily activities?

Are there any changes in how you walk, grab objects, button your shirt, etc?

Have you changed skin care routines recently?

If so, how do you think that has affected things?

Have you experienced a different environment?

Have you been in especially hot or cold environments, or in the sun without protection? What temperature do you use for showering?

Are you taking your care team’s advice?

Are you taking your medications as prescribed? Are they working well for you in general? If you’ve stopped, how long ago?

Anything else you’ve noticed out of the ordinary?

Review your journal and notes and compare how your side effects have evolved over time.

Skin treatments and spas

Here are some suggestions on living an active life despite skin changes.

Many of us find spa and skincare treatments relaxing and rejuvinating. During treatment, we want continue our routines and feel as normal as possible. We also want to look like ourselves. So what spa treatments are safe, and which should you avoid?

The first rule of thumb is to involve your care team in lifestyle decisions too. COLONTOWN members have some tips for using spa treatments, makeup, and other fun things:

Let your aesthetician or nail technician know you are taking treatments for cancer. Some may be certified for oncology, so take a look around to see what your options are
When it comes to hair removal, avoid waxing because your skin may peel. If this is really something you want to pursue, threading may be an option. You can also try gentle electric razors
Ask for gentle products
If you are getting a manicure or pedicure, bring your own sanitized tools. Your immune system may be more sensitive. Do not cut your cuticles, because it can expose you to infection. Do not use fake or gel nails, in part because you can’t monitor your real nails for health issues
Try makeup designed for sensitive skin. “Non-comedogenic” products are intended to not clog pores. You may have to try several brands to find one that works for you
Green tinted makeup can offset redness. Often you can find this in a palette with orange and red tints too
Experiment with tinted moisturizers with SPF built in
Use extra care to reduce sun exposure and do not use tanning beds
As you go through treatment. your skin may become less likely to have rashes or other issues. The middle of your chemo cycle is the worst time to get any skin or nail treatments. If you really want to get a treatment done, aim to do it within a few days before your next round of chemo

Managing mental health

Skin is one of the first things may people notice about us — it’s our wrapper and how we present ourselves to the world. So the impacts of treatment on skin can be pretty distressing, because you may feel it changes the way others see you. Sometimes seeing rashes, bumps or irritation when you look in the mirror can be surprising and really impact our mental health and outlook on things. If this happens to you, you’re not alone.

It is not vain to want to feel and look good. Many COLONTOWN members have experienced these feelings. It’s important to stay in communication with your care team about how you are feeling — not just physically, but mentally and emotionally as well. Many people with cancer find they need some extra help through mental health medications, someone to talk to in the hospital, or support groups. The COLONTOWN community groups are here to lift you up, lend an ear, and provide suggestions on what has helped them. Join here.

Looking for additional mental health resources?

Here’s a page from CRC101 (our complete guide for colorectal cancer patients and caregivers) on managing it all:

How do I handle all these new emotions?

As treatment ends and beyond

After you finish treatment, you may expect your skin to quickly return to normal. While some skin issues will resolve soon after you complete treatment, others may hang around for a while longer.

And even when those rashes resolve, you may find your skin has changed significantly. For example, you may be more sensitive to the sun, or find yourself having allergic reactions to creams you’ve used for years. It’s important to be patient, keep track of your side effects, and learn to get used to the new skin you’re in.

Living with long term impacts

Going through cancer treatment, whether it’s shorter or longer term, causes changes to your body. Not everyone will experience long-term impacts to their skin, but here are a few to watch out for:

Sun sensitivity may continue for several months. Using dermatologist-recommended sun protection is smart at any time
Your skin and hair may continue to be dry, flaky and itchy for months. Keep up with your skincare and moisturizing routine
Nails take months to a year to grow out — so you may see lines, ridges, cracks, discolorations and brittleness for some time to come. Your nail bed color may be different as well, and you could lose nails after treatment is complete
Although it is not well-documented in published research, some COLONTOWN members have found they developed new skin reactivity to products such as bandages, dressings, medical cleansers, surgical tapes, certain skincare products or sunscreens during and even after treatment
Take note of any new redness, itching or irritation from these products and alert your care team as soon as possible to get it treated

Looking for additional resources?

Take a look at this booklet on skin problems and solutions from FightCRC.

Guide

BRAF Guide

The basics

DocTalk

This video is a great overview of treatment options for BRAF.

Treatment regimens

Some common treatment regimens for BRAF-mutated CRC (described in the DocTalk above) include FOLFOX/CAPOX and FOLFOXIRI/FOLFIRINOX. A common next-line treatment for BRAF-targeted treatment is called the BEACON Doublet, which includes BRAF inhibitor encorafenib (Braftovi) and EGFR inhibitor cetuximab (Erbitux). These may be coupled with additional treatments.

Click on the links below to read more about specific treatment regimens.

Treatment questions

Now that you’ve read about common chemo and targeted therapies, it’s good to learn about treatment sequencing. The links below are useful for those interested in knowing what to expect with chemotherapy and what’s next when someone progresses on their current regimen.

For BRAF patients, it’s very important to look at trial options before you need them. For example, there are clinical trials for stage IV patients in the first line setting — which means you have to start these trials before starting chemotherapy. Read about clinical trials below to learn how clinical trials can fit into your treatment plan.

Because BRAF-mutated CRC is a rare subtype, it’s a good idea to make sure that someone in your care team has experience treating your cancer. That could be your primary oncologist, or a specialist to consult with at key decision points. To learn more about your healthcare team, read our link below.

More DocTalks

The Lecture Hall is a great place to learn more about BRAF-mutated colorectal cancer. Watch the videos below to get a good overview of BRAF options.

Playlist

5 Videos

BRAF V600E research update: Dr. Corocan

In this talk, Dr. Ryan Corcoran from MGH talks about the evolution of treatments for BRAF-mutated CRC.

Patient perspective by Roger

Diagnosed: May 2021

Stage: IV, currently NED

Type: Mucinous adenocarcinoma, MSS, BRAF V600E, IDH1

What advice do you have for other BRAF patients and caregivers?

Do your research. Learn as much as possible about your situation. Use COLONTOWN University.

Plan ahead. There is often a window of opportunity for CRS/HIPEC. If so, you don’t want to miss it. Find out what the risks of waiting versus the risks of doing surgery are. There is a potential trade-off because of potential growth while healing from surgery.

Figure out your priorities. Is three to six months worth more than the small possibility of a cure, even if very unlikely? My philosophy was to fight for surgery, considering that to be the only real curative path.

What are some dos and Don’ts you want people to keep in mind?

Do share more rather than less with your doctors. Things could be relevant.

Do your research. Learn as much as you can about your situation. Use COLONTOWN University.

Do contact experts. Get second opinions. Get third opinions.

Don’t hold back. Ask a lot of questions.

Don’t give up. We applied for CRS/HIPEC once and got rejected. We applied again when I had better response from the Beacon regimen, and got approved.

Important trial to consider for newly-diagnosed metastatic CRC patients

This is a first-line trial, which means that you are ineligible if you have already started chemotherapy. Make sure to discuss your clinical trial options with your doctor after diagnosis.

A Study of Encorafenib Plus Cetuximab With or Without Chemotherapy in People With Previously Untreated Metastatic Colorectal Cancer

NCT Number: 04607421

Want to learn more about BRAF?

This article by Cancer Treatment Reviews goes over a European Expert panel consensus on metastatic BRAF-mutated CRC. It includes four sample patient scenarios, and they go through treatment sequences for each patient. It also has a list of current BRAF trials.

Want to chat with other BRAF patients?

Join one of our COLONTOWN support groups:

Try Tom & Con’s BRAF+ Clinic for BRAF education and community

Want to be part of our community? Fill out the registration form here.

Guide

Side effect
management

Cancer and cancer treatments can come along with a host of unpleasant side effects. Depending on the treatment regimen you are on, these side effects can vary. This guide can help you navigate them.

Treatment regimens

DocTalk

Want to learn more about how palliative care can help you manage side effects? Watch this video by Dr. Joshua Briscoe.

https://youtu.be/8-Js2U2Mets

Dr. Joshua Briscoe: Prognostication or Prophecy? (https://youtu.be/8-Js2U2Mets)

Nausea

Tips and tricks

Take pre-meds. Your oncologist will likely prescribe anti-nausea medications like dexamethasone, Compazine, Zofran, Ativan, and Akynzeo. Even if you don’t feel sick, take your medications as prescribed. It’s much easier to prevent nausea than it is to treat it once it has started
Stay well hydrated. Drinking plenty of water and receiving fluids post-infusion can help with nausea
Try eating a small amount of bland food, like rice or bread to calm the nausea down
Choose foods that sound appealing to you. If you’re craving Cheetos, follow your gut. Avoid foods with strong smells
Try ginger tea, candies or gummies
Some patients find acupuncture or acupressure helpful
Look into deep breathing or muscle relaxation techniques

Skin problems

Tips and tricks

Try to stay out of the sun for extended periods of time. Wear hats and protective clothing, and purchase a good sunscreen. Wear it every day — whether or not you’re planning on leaving the house!
Chemotherapy can cause painful mouth sores. If you develop them, discuss your symptoms with your oncologist immediately. A dose reduction of 5FU can help. Stick to soft foods, like soups, broths, yogurt and smoothies. Try biotene mouthwash, or gargle with baking soda, salt, and water. Ask your doctor about prescription mouthwashes, like Magic Mouthwash and PerioGuard. If your mouth sores become infected, you might need an antiviral or antibiotic medication. Speak to your oncologist if you think this is the case
If you experience extremely dry skin, this can often cause painful cuts on your hands and feet. Apply a good moisturizer throughout the day, particularly after washing your hands or washing dishes
Some patients on Erbitux or Vectibix experience an acne-like skin rash. Your oncologist may prescribe an antibiotic, such as doxycycline, to help alleviate the rash. A good moisturizing cream, such as Aquaphor, can help

Constipation

Tips and tricks

Drink plenty of fluids
Make sure to get some light exercise. This can help get the bowels moving
Stool softeners such as Miralax, Dulcolax, magnesium citrate or Milk of Magnesia can help get things moving
Metamucil can help bowel regularity
Try prune juice

Diarrhea

Tips and tricks

Make sure to stay hydrated. Drink plenty of water and consider drinks with electrolytes
You may be given atropine as a pre-med to help prevent diarrhea
You can also take over the counter medications such as Immodium or Lomitil at home to help manage symptoms

Signs of treatment toxicity

Some people have a difficult time processing the drugs 5FU/capecitabine (Xeloda) or irinotecan, key parts of common CRC chemo regimens like FOLFOX, FOLFIRI, FOLFOXIRI, CAPOX and CAPIRI. Keep a look out for reactions like severe diarrhea, vomiting and dehydration. Read more about signs of treatment toxicity and tests you can take here.

Patient perspective by Margee

Diagnosed: April 2021

Stage: IV

Type: Rectal cancer, liver metastases

I was diagnosed stage IV with mets to my liver in April 2021. After a liver biopsy, it was determined that my CRC was KRAS wild-type. This enabled me to start Vectibix in June 2021, when my chemo began (FOLFOX).

The Vectibix infuses for an hour. It is known to cause a rash in a very high percentage of people, so my oncologist has me taking a precautionary antibiotic (doxycycline). Vectibix also gives you “sun sensitivity” which can make your rash even worse.

My first few rounds of Vectibix were OK, nothing too bad. However, I developed HORRIBLE canker sores, had peeling, bleeding lips, rashes on my calves and a very painful rash on my upper chest that I think was sun-related.

My oncologist was able to prescribe Valtrex for the canker sores, which cleared them up in a day. Magic mouthwash (Benadryl, lidocaine, milk of magnesia) can also help. We reduced my dose in half at about round 4, and I really have not had too many issues since then. My lips and mouth can get a little sensitive but nothing like what happened when it was full strength!

At 9 rounds, my liver tumors had reduced by 75% — a great response to FOLFOX & Vectibix. My rectal tumor was only a “scar” (I did have 5 days of short course radiation which also contributed to this result).

Lifestyle factors

Want to chat with other patients and caregivers about side effects?

Join one of our COLONTOWN support groups:

Check out Live Wire to manage neuropathy from chemotherapy
Join Palliative Pantry for guidance on palliative care
Try Longhauler Hollow for third-line treatments

Want to be part of our community? Fill out the registration form here.

Recent research

Skin Rash Study Before Chemotherapy in Colorectal & Head and Neck Cancer Patients

NCT Number: 01874860

Want to learn more about side effect management?

Take a look at these great resources:

Take a look at the Foodstruct website for more information about nutrition. You can compare the nutritional properties of different foods to help decide which ones fit best with your health and weight goals
Check out this article from the Mayo Clinic on maintaining weight and appetite during treatment
Read this article from the Mayo Clinic for information on exercise and cancer
See this guide from the United Ostomy Associations of America for information on ostomy nutrition