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What should I expect with chemotherapy?

Infusion day can cause a lot of anxiety for many people. What should you expect?

This post will focus on FOLFOX and CAPOX, as these regimens are commonly used as a first-line treatment in the US.

If you’re receiving FOLFIRI or FOLFOXIRI, many things will be similar. We’ll talk about key differences at the end.

What should I do to prepare?

The first chemo session is usually the most stressful, as you have no idea what to expect. By default, many of us expect the worst! Remember that your care team is there to support you.

Try to get as much sleep as possible the night before. Drink plenty of water. Meditate, exercise, eat, talk to a loved one, hug your kids/spouse/pets, indulge yourself a bit. Do whatever you can to relax. But don’t feel bad if you can’t stop worrying about your treatment. 

If you have had surgery before chemo, it’s normal to worry about how your shortened intestines will react to treatment. Though you probably won’t need them, it can’t hurt to be prepared with some adult diapers and extra clothes. Pack yourself water, a snack, a book, and any other supplies you think you might need to feel comfortable.

You might have heard about icing. We’ll go into more detail later on, but icing refers to cooling down your hands, feet, and/or mouth with ice during oxaliplatin infusions. Anecdotal evidence suggests that icing can help prevent cold sensitivity caused by the drug. If you’re interested in icing, you’ll need to bring a cooler with ice chips and ice packs. It’s probably a good idea to email your doctor about icing beforehand to let them know about your plans.

Read more about icing here.

Want to learn more about icing?

LiveWire, one of our COLONTOWN Facebook groups, has more information on icing as well as a letter you can print out and share with your oncologist.

Want to join? Fill out the registration form here.

Don’t be afraid to lean on those around you. If you can, arrange for family, friends, colleagues or neighbors to help you with rides to appointments, childcare, or anything else you need.

It’s always a good idea to have someone you trust take you to your first chemo session. Once you’ve settled in comfortably, and things are going well, they can head out. Your chemo nurse should be able to estimate how long your infusion will take, so your visitor will know what time to pick you up. However, if your visitor wants to stay — and you’re comfortable with that — it can be nice to have company during your infusion. 

If you had a port placed recently, your port area may still be sore. Ask for a port pillow to help with seatbelts in the car. Some infusion centers may have them. Many patients find that lidocaine ointment or numbing cream can help prevent pain when accessing ports. Apply the cream about 30 minutes before your appointment. You will need to get a prescription from your oncologist.

Remember to eat! Pack a lunch, or find out if there is a cafeteria or coffee shop nearby to grab something to snack on.

What happens on infusion day?

FOLFOX is given as an infusion. Either the day before, or the day of treatment, your healthcare team will flush your port and take a blood sample for testing.

A complete blood count (CBC) and complete metabolic panel (CMP) is done on the blood draw. Ask for the results, and try to stay informed on what the results mean.

Learn more about routine bloodwork here.

Many patients will also have their CEA tested. CEA is a tumor marker, and for some patients, is a good predictor of treatment effectiveness and progression. However, CEA is not useful for everyone, so it’s important to discuss these results with your team if you have any concerns.

In many places, you’ll meet with the oncologist to go over what to expect and any possible side effects. Make sure that you know who to call if you have any issues or questions that can’t wait until your next appointment. Then, you’ll be sent over to the infusion center.

At the infusion center, they usually start with fluids and pre-meds. The fluids are to keep you hydrated. Pre-meds generally include drugs that fight nausea, like Aloxi, Emend, dexamethasone or Ativan — although this can vary depending on the center and your specific chemo regimen. 

The pre-meds are followed by oxaliplatin, which is usually administered by IV over two hours. After the oxaliplatin, you will be given folinic acid (Leucovorin) over 10 to 15 minutes. At some centers, you will receive 5FU (a small dose given as a quick push or bolus) infused for a short time. This helps your healthcare team make sure you won’t have an allergic reaction or an acute response to 5FU. Then, they connect you to the 5FU pump and send you home.

You’ll be asked to drink plenty of fluids, and continue to take medication such as dexamethasone, Ativan, Compazine or Zofran. It’s a good idea to take your anti-nausea meds before nausea hits, to keep ahead of it. Some centers offer fluids on disconnect day as well.

When it comes time to be disconnected from the 5FU pump 46 hours later, there are 3 options: You will be asked to come back to the cancer center, a home health nurse will come to your house, or you or your carepartner will be taught how to disconnect the pump. Find out what to expect from your cancer center, and make sure you have a 24-hour number to call in case of any issues. This is usually a different number than your on-call doctor. 

If you have any side effects — no matter how small — jot them down in a journal. If you’re having side effects, don’t assume that’s just how chemotherapy is. Often pre-meds and home meds can be adjusted to reduce unpleasant effects. It’s important to note that pre-meds can also cause side effects, so it’s important to work with your oncologist and palliative care team to figure out what works best for you. For example, anti-nausea drugs can cause constipation, so you might need to take a stool softener or laxative to help with this issue.

Keep an eye on how your first cycle goes. Make notes on how you feel every day (infusion day, disconnect day, infusion week, the week after) to help you notice patterns and be more prepared for the next cycle. Usually, people feel fine on infusion day — save a little cold sensitivity, and some first-bite pain. The side effects often become more pronounced on disconnect day, or a couple days afterwards, but everyone responds differently. Some people have very mild side effects. As the saying goes, prepare for the worst, but hope for the best!

Want to know what happens on infusion day? In this video, Tesia takes you along for the ride.

What if I’m having CAPOX instead?

Early stage CRC patients have the option of receiving CAPOX instead of FOLFOX. Research on 13,000 patients in the IDEA trial showed that three months of adjuvant (post-surgery) CAPOX or FOLFOX is as good as six months of chemo for stage III colon cancer. More details about this trial can be found here and here.

So what should you have? FOLFOX and CAPOX each have their own advantages and disadvantages, and it’s a good idea to discuss them with your care team. 

If you are reciving CAPOX, you’ll need to identify a pharmacy that can order your drugs in time for your treatment. Not all pharmacies carry chemotherapy drugs! Your oncologist or insurance company should be able to offer some advice if you’re having trouble finding a pharmacy.

Infusion day starts off the same as FOLFOX. After your port flush, blood draw, and appointment with your oncologist, you will get your pre-meds through your IV. 

Then, you will receive oxaliplatin. Ask for a warm blanket, because you might feel cold. Keep your neck and jaw covered to help with cold sensitivity. Remember to drink plenty of fluids before chemo begins, and continue to hydrate yourself throughout your infusion.

Since CAPOX has a higher dose of oxaliplatin, a short infusion time can sometimes cause acute side effects — like difficulty keeping eyes open, slurred speech, inability to walk in a straight line. These symptoms are harmless, and go away within twelve hours, but they can be scary! Longer infusion times can help prevent this.

It’s also a good idea to stay away from foods fortified with folic acid, such as bread and cereal, during the 14 days on capecitabine pills. Folic acid can make capecitabine side effects worse. Bread and cereal without added folic acid should be okay to eat.

What should I expect for the first few days after infusion?

Now that infusion is done, how do you feel? You should be happy that you made it through your first infusion! But if you take a sip of cold water by mistake, you may already feel the cold sensitivity, or a ground-glass feeling in your throat.

If it’s winter, be careful to cover your nose and mouth with a scarf while leaving the hospital or infusion center. A breath of cold air can trigger a sudden response where it feels like you can’t breathe. If that happens, stay calm. Cover your nose and mouth, and slowly breathe in the warm air. The feeling will pass, but it can be very scary the first time you experience it! Wear gloves, and be careful not to touch anything cold. If you ice during oxaliplatin infusions, you may not experience this cold sensitivity.

After you get home, take your anti-nausea meds and try to rest. The sound of the pump might be annoying, so try do deal with it imaginatively (smother it with a pillow or blanket, put a bin over it, use earplugs or headphones).

If you are on CAPOX, you may need to start taking capecitabine (Xeloda) pills the night of your infusion. They come in 500 mg tablets, and patients usually have to take 3 or 4 tablets twice a day for 14 days. Make sure that you are taking the right number of tablets at the right time — usually within 30 minutes of eating a meal.

The day following infusion may or may not be eventful. You might already be feeling oxaliplatin side effects, such a shooting pain in your jaw when eating your first bite of food or feeling pain in the back of your eyes when tears well up. If you grab something from the fridge using your bare hands, you might get pins and needles or a tingling feeling. Some people have nausea and no appetite. Dexamethasone, often used as a pre-med, can cause mood swings and insomnia. Drink small quantities of liquid frequently, and eat what you can. If you have trouble with bowel movements, take a gentle stool softener or laxative.

The next few days may be a bit difficult. You might see different side effects start showing up on days two and three (disconnect day). Pre-meds may not last that long, so make sure to take anti-nausea meds before the nausea hits. Exhaustion is a common side effect. If you feel tired, lie in bed and watch TV or sleep. Just take it easy. If you have small kids, ask a loved one to keep them busy. Just focus on resting.

In about two or three days, you’ll likely start feeling better. Keep a journal and write down when you started feeling poorly, and when things eased up. This will help you plan out your life for the next cycle.

What should I expect from the next few cycles?

The next few cycles are usually better than the first, as your body gets used to the chemo. But once the cumulative doses start to build up (around cycle six, seven or eight for FOLFOX), side effects start to worsen too.

Blood counts may dip, liver enzyme levels may climb. Tiredness may extend beyond the couple days after disconnect. You may start feeling numbness and tingling in your hands and feet. Your appetite may not recover as much. Some people become emotional easily, and cry over simple things. Your sense of taste and smell might change. You might be able to smell everything — your carpet, your furniture, smells you didn’t know you could smell! People on CAPOX may start to develop hand foot syndrome. You may experience short term memory loss. Your skin texture and color can change — becoming very smooth, then dry and scaly. Your hair texture can change, too. Your nails may look pale. You might even belch and fart a lot!

All of these changes sound scary. But remember to write everything down and discuss it with your oncologist at your next visit. There are many things they can do to address side effects. They may adjust your pre-meds or home meds. In some cases, they might reduce your dose of oxaliplatin of 5FU.

Read more about side effect management here.

If there’s one thing to keep in mind, remember this: Drink as much water or liquids as you can — 8-10 glasses is a good goal. If you feel extremely tired, go to the infusion clinic and ask for fluids. Many places offer this.

Also, stay away from sick people and crowds, especially during the middle of your cycle when blood counts tend to dip. Counts are usually back at the beginning of the next cycle. If you want to socialize, the day before your infusion is when your blood counts are highest (at least in earlier cycles).

Some people can work through chemo, others can hardly get out of bed. Remember that everyone is different, and listen to your body. Don’t try to do it all!

What about severe side effects?

Severe side effects are rare, but they can happen. It’s important that you talk to your care team about any side effects you’re having. If you experience any extreme or unusual symptoms, seek medical attention immediately. If you’re unsure, call your doctor to check.

When you are hooked up to the 5FU pump, your care nurse will give you a small dose of the drug (also called a bolus). Skipping this bolus can reduce side effects such as nausea, vomiting or exhaustion. If you experience these side effects, ask your oncologist if you can skip the 5FU bolus. 

Sometimes these side effects can be caused by a DPD deficiency. This means that your body is unable to metabolize (break down) 5FU. If you have any concerns about this, speak to your oncologist. There’s a blood test panel they can run to determine whether this is affecting you.

A very small percentage of people develop chest pain after the first cycle or two of FOLFOX — or while taking capecitabine pills. This may be due to a coronary vasospasm (a temporary tightening of the wall of one of the main arteries that supplies blood to your heart muscle). Although it sounds contradictory, for these patients, the 5FU bolus may actually help with this problem. This is something to discuss with your oncologist.

What should I expect with FOLFIRI?

If you’re having FOLFIRI for the first time, infusion will be very similar. The main difference has to do with pre-meds and side effects.

You will still receive anti-nausea meds. However, FOLFIRI can also cause extreme diarrhea, as many as 10 days after infusion. You’ll probably be given Atropine to prevent this. You can also take Immodium. Make sure you’re well hydrated! If you experience extreme diarrhea that does not improve with Immodium, call your care team immediately.

What should I expect with FOLFOXIRI/FOLFIRINOX?

If you’re having FOLFOXIRI or FOLFIRINOX, infusion day will look similar. However, you’ll spend more time at the infusion center. You’ll be given more pre-meds, along with oxaliplatin over two hours and irinotecan over 90 minutes. When irinotecan is given before oxaliplatin, the side effects are often more manageable.

You will also be given more home meds, as you might experience side effects associated with both the FOLFOX and FOLFIRI regimens.

When should I contact my care team?

Remember to keep up to date with your side effect journal, and work with your team to better manage side effects for subsequent cycles. Before your first chemo treatment, you should be given a 24-hour phone number to call in case of severe symptoms. Make sure to discuss possible side effects with your oncologist, and know what symptoms to look out for. Some severe symptoms include:

  • Persistent high fever
  • Unexplained bleeding or bruising
  • Shortness of breath
  • Unusual or intense pain
  • Allergic reactions, such as severe itching, difficulty swallowing
  • Diarrhea or vomiting that doesn’t stop

So why does this matter?

Knowing what to expect from your first infusion will help you be prepared mentally, physically and logistically. It will help prevent extra stress on a day that’s already stressful enough! Being prepared will also help you be ready with questions for your oncologist and chemo nurse, and help you advocate for yourself if you are concerned about something.

Still have questions about chemo?

Join one of our COLONTOWN Facebook groups:

  • Check out Colontown Downtown, where you can ask general questions about chemo and learn about other patients’ experiences 
  • Chat about chemo side effects in Corner Cupboard
  • LiveWire can help you learn more about icing
  • Check out Healthy Gut Cafe and Fitness Center to learn about how to support well-being through diet and exercise
  • Try Palliative Pathways to learn about how your palliative care team can help manage side effects

Want to join? Fill out the registration form here.