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Long-term chemo tips and tricks

If you’ve been diagnosed with stage IV colorectal cancer, chemo will be an important part of your treatment plan.

Just a note, this section includes sensitive topics such as prognosis, palliative care, and end of life decision-making. Take a moment and think about whether or not you’re ready to read about these things — and come back when you’re ready.

For some stage IV patients, chemotherapy can shrink tumors enough for them to qualify for surgery or other localized treatments. This sometimes allows these patients to reach NED (no evidence of disease) status permanently, or for a period of time long enough that they can take a break from treatment.

However, this is not the case for everyone. Most stage IV patients will be on chemotherapy for an extended period of time.

If this situation applies to you, you’re probably wondering how to cope and continue living your life. If you haven’t yet started treatments, you may envision weeks, months or even years of feeling ill all the time.

Luckily, for most people, chemo is not like what you see in the movies. You will probably have a few “bad days” each cycle, where you may feel fatigued, nauseous or just generally a bit icky — but your oncologist should be able to significantly alleviate the worst side effects using premeds (drugs given before treatment). 

In addition, most patients feel pretty well on their “off chemo” weeks, and are able to get out and do things they enjoyed before their diagnosis. 

Patients who experienced pain or other tumor-related symptoms prior to diagnosis may actually feel better after starting chemo, as chemo can shrink tumors and help alleviate certain symptoms.

All of this being said, starting a long-term chemotherapy regimen will be a significant change for most people. But we’ve got you covered! Here are some tips and tricks to help you stay on top of everything and maintain a good quality of life while on treatment.

Get organized

If you are on FOLFOX, FOLFIRI or FOLFOXIRI, you’ll be having chemo infusions every two weeks. If you’re on CAPOX, you’ll have infusions every three weeks.

After a few cycles, you will begin to notice patterns in how you feel. This can be different for everyone. Some people feel okay on infusion day and a couple days afterwards, but crash after they stop taking steroids they were prescribed for nausea. Other people feel poorly on infusion day, but slowly recover as the days go on.

You’ll also notice patterns in side effects. There are many potential chemo side effects, and it’s unlikely that you’ll experience all of them. Over time, you’ll figure out which side effects are most common to you, how long they usually last, and how best to manage them. To help you keep track, it’s a good idea to keep a journal where you write down how you’re feeling and how your side effects change from one day to the next.

Once you figure out how you react to your particular chemo protocol, you can start to get organized. Here are some tips:

  • Plan activities during days or times of day that you’re likely to have more energy
  • If you’re working, let your employer know which days you will need to take off, work from home, work fewer hours, or take more breaks
  • Make a list of things that need to be done on the days you know you won’t be feeling well, and delegate them to family or friends
  • If you have limited support from those around you, try outsourcing. Hire a weekly cleaner, order take out, prepare freezer meals on your off weeks, get groceries delivered, and remind family and friends that you may be unavailable to answer phone calls or text messages when resting

Lean on your support system

If you have support from loved ones… delegate, delegate, delegate! Make a list of the things you need help with, and ask your family and friends to help get stuff done. 

It’s not always easy to ask for help, but don’t be shy. Most people like being useful, and the people around you are often more than willing to pitch in. 

Here are some things you can ask others to help with:

  • Cleaning, laundry, gardening, other household chores
  • Childcare
  • Preparing meals
  • Grocery shopping
  • Picking up prescriptions from the pharmacy
  • Gift vouchers for food delivery services, cleaning services, or babysitting services
  • Rides to chemo appointments
  • Company while you get chemo infusions, if you like having a friend with you (if your center allows it). Even if you can’t have someone there with you in person, consider making a call or video chat date

Communicate with your team

If you have stage IV CRC, your treatment plan will be a marathon, not a sprint. It’s important to have regular discussions with your team about the goals of your care. This can help you know what’s coming, and give you the opportunity to seek a second opinion if you’re unsure your team’s approach is right for you.

Many patients initially respond quite well to first- and second-line FOLFOX and FOLFIRI. If you’ve recently started first-line treatment, or a new line of treatment, the goal may be to help you acheive shrinkage and qualify for resection surgery. This may be the case particularly if you have ogliometastatic disease — which means stage IV cancer with limited metastases in a small number of organs.

If you have more widespread metastases, or painful symptoms related to a partial bowel blockage or tumors pressing on nerves, the goal may be to shrink or stabilize the tumors in order to reduce pain and keep symptoms under control.

If you have experienced tumor progression on first-line treatment, and have been put on Lonsurf or Stivarga, the goal often changes from shrinkage to stability. This means aiming to slow down disease progression.

In order to plan ahead and know what to expect, it’s important to understand why the treatment is being recommended. One way to approach this topic with your oncologist is to ask questions, including:

  • What are you hoping to acheive with this treatment (shrinkage, stability, symptom control, etc)?
  • What is the best case scenario?
  • What is the worst case scenario?
  • What is the most likely scenario?

If you aren’t happy with the answers, it may be a good time to seek a second opinion. You may find another team who recommends something different, or the second opinion will confirm your original team’s approach and give you peace of mind that you’re getting the best care possible.

Plan ahead

If you’re on a long-term chemo plan, it’s important to understand that most patients will develop resistence to specific chemo drugs at some point. This means that they can stop working. For this reason, it’s a good idea to think about the next steps in your treatment.

As mentioned earlier, many patients respond quite well to FOLFOX and FOLFIRI, and may acheive shrinkage or long periods of stability at first. However, these drugs may stop working. As you move to second-, third- and fourth-line drugs, the goal often shifts from shrinkage to maintaining stability.

For this reason, it may be a good idea for stage IV patients to start researching clinical trials once they’ve progressed to second-line treatment. The process of researching and applying for clinical trials can be quite time consuming — so it’s best to do this when you have lots of time and options. Once patients experience tumor progression on second-line drugs, some patients alternate clinical trials with Lonsurf and Stivarga. This gives them the opportunity to participate in more trials as extra lines of therapy.

Try palliative care

Although chemo side effects can be slightly different for everyone, they can build up and become worse over time. Don’t suffer in silence! If you’re experiencing symptoms that significantly affect your quality of life, speak to your team. They can adjust premeds and prescribe supportive meds to help you manage unpleasant symptoms and side effects. Research has demonstrated that promptly reporting symptoms can lead to better management and quality of life for patients.

If at any point during your treatment you feel like your side effects are not well managed, you can request a referral to a palliative care specialist. Many patients are reluctant to do this because they associate palliative care with end-of-life care. This is not the case. Palliative care specialists help patients manage symptoms at any point during their health journey. They can be very helpful and offer in-depth knowledge on side effect management and other supportive care. 

For more information on what a palliative care specialist does — and a video on how palliative care might benefit you — check out our Healthcare Team Roundup section.

Consider taking a break

If you are on long-term chemo or “chemo for life,” it’s important to learn how to balance treatment with quality of life. Many stage IV patients take occasional, short chemo breaks to go on vacation, attend family weddings or other important events. Some patients may take short breaks to help give their bodies time to recover from side effects.

If you feel that you would benefit from a short treatment break, the best thing to do is speak honestly with your oncologist and ask for their recommendation. In many cases, a short break will not make a significant difference in your overall prognosis — but it’s always important to consult with your oncologist.

It’s ok to stop treatment

This is a very sensitive topic for many people. It’s important to remember that as the patient, decisions about your care ultimately lie in your hands. If you come to a point where you feel you would like to stop treatment for any reason, it is your right to do so.

Many patients feel like stopping treatment is the same as giving up. They may be worried about disappointing family and friends. This journey is yours, and decisions related to your treatment are yours alone. Making the decision to stop treatment is never an easy one, but know that you are not giving up. Your loved ones are walking this path with you, but you should feel comfortable knowing you are making the decision that is best for you. 

Want to learn more about managing treatment long-term?

Join one of our COLONTOWN Facebook groups:

  • In Four Corners, stage IV patients can ask questions, get advice, and find support about treatments, living with cancer, and so much more
  • Stage IV carepartners group. Carepartner equivalent of Four Corners.

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: May 18, 2022