What should I expect with chemotherapy?

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