Chemotherapy at home: 9 things to know

Many patients will be prescribed chemotherapy as a part of their cancer treatment plan. That could involve taking pills at home or wearing a portable pump for a few days.

But how does the process of getting chemotherapy at home work, and what can cancer patients and caregivers expect?

Here are nine things to know about at-home chemotherapy. Some may surprise you.

1. Pumps are often simpler to manage than oral chemotherapy.

Patients don’t really have to do much with a chemotherapy pump, except learn how to keep it clean and dry. Usually, only nurses are allowed to attach them to patients’ ports or PICC lines. Then, patients wait 10 to 15 minutes to make sure the pumps are functioning properly. After that, they’re free to go.

Since pumps are designed to deliver consistent amounts of chemotherapy over a certain period of time, patients don’t have to worry about proper dosing or timing. And, unless a pump malfunctions, which is rare, they can virtually forget about it until it’s removed. Nurses can flush out their PICC lines or ports and make sure they’re clean and ready to go for the next time when they return to the clinic.

Oral chemotherapy, meanwhile, involves more responsibility. Because while patients are in the hospital, nurses manage all of their medications. But when they’re taking pills at home, patients have to remember not only when to take them, but also how to take them (with food or not) and how to store them (at room temperature or in the refrigerator).

That can get tricky, as some medications are only taken at specific intervals, rather than regularly or daily. And at home, patients might not have anyone around to help them keep track.

2. Chemotherapy pumps are fairly simple to carry.

Some patients are very concerned when they first find out they’ll need to be wearing a chemotherapy pump for a few days. But the pump itself is only about the size of a smart phone, just a little thicker and heavier.

Men usually opt to carry it in a fanny pack, but a lot of women just put in in their purses. Either way, it often ends up being much easier to carry around than patients expect. The tubing is usually long enough that most patients can just leave the pump outside the shower and cover the area where it attaches while they’re washing themselves, too.

3. Chemotherapy pumps are usually used briefly — and only for certain medications.

Not many IV chemotherapies require a take-home pump. One of the most common take-home chemotherapies is 5-fluorouracil, or 5-FU for short. It’s an older drug that’s often used to treat gastrointestinal cancers, such as colorectal and pancreatic.

Normally, 5-FU is given over 46 to 48 hours. But it’s also used as a radio-sensitizing agent to make radiation therapy more effective. Most patients won’t have to wear a chemotherapy pump for longer than a few days. But in some cases, patients might need to wear a pump for up to five days, as it has to be running on the days that patients come in for radiation therapy.

4. Chemotherapy pumps are easy to shut off, if necessary.

Patients who are going to have a reaction to a pump-delivered chemotherapy drug will normally do so within the first 10 or 15 minutes of an infusion. So, once the initial observation period has ended, patients generally don’t have any problems.

That being said, patients should still find out how to stop the pump before leaving the clinic. Usually, this just involves clicking a button. But it’s still important to know how to do, because patients and caregivers should never be handling pump-based drugs at home. And stopping the pump keeps the drug from running until you can get back to the treatment center. Nurses will deliver any remaining chemotherapy you need once you get there.

Come into the clinic for assistance immediately if you experience any of the following:

• The pump starts beeping, which usually indicates a clog in the line or a leak in the bag.
• A burning sensation, redness or tenderness appears at the infusion site.
• You become short of breath or develop a sense of heaviness in your chest.

Most infusion centers are not open 24/7, so if something happens overnight and you’re an MD Anderson patient, you should go to our Acute Cancer Care Center.

5. Oral chemotherapy drugs come only from specialty pharmacies.

You can’t just pop into your local corner drug store to pick up an oral chemotherapy prescription. Most regular pharmacies don’t carry them or keep them in stock.

Some chemotherapy drugs can only be obtained from specific mail-order pharmacies, due to insurance companies’ contractual obligations. Others require refrigeration, and must be shipped using insulated containers to keep them at the proper temperature.

MD Anderson patients can usually obtain their medications through our specialty pharmacy, which is located on the second floor of the Mays Clinic at our Texas Medical Center Campus. But there may be a delay between when you request something and when it’s actually available for pick-up.

That’s because not even MD Anderson keeps every drug available on hand, and it can take 5 to 7 days for the one you need to be shipped and delivered. Some drugs will also require pre-authorization from your insurance company, which can add another 2 to 3 days to the process. So, it’s important to plan ahead if you’re due for a refill soon, or if severe weather is threatening.

6. You won’t necessarily get a new prescription just because your dose changes.

When patients are taking oral chemotherapy, doctors may change their dosage due to side effects or other issues. If you start off taking three pills twice a day, for instance, but develop mouth sores or diarrhea as a result, your doctor might reduce your dose to two pills twice a day, or even less.

But a dosage adjustment doesn’t mean you need a new prescription. Unless a completely different drug has been prescribed, you should still be able to take the same pills you did before. You’ll just need to follow your doctor’s verbal instructions as to how to take them, as opposed to the initial instructions that were printed on the label. Always double-check with your clinical team if you have any questions about chemotherapy dosing.

7. Oral chemotherapy medications should be kept in their original containers.

Pill organizers can be useful for keeping track of vitamins and common maintenance drugs for conditions like diabetes and hypertension. But with oral chemotherapy, it’s generally best to store those drugs in their original containers, as they might start degrading if exposed to oxygen or humidity.

If you maintain separate pill sorters for each type of chemotherapy drug, this might not be an issue. But you definitely don’t want to get those mixed in with any of the other drugs you’re taking. If they’re similar shapes and colors, it might be easy to confuse them.

Check with your clinical team about the proper way to store your medications to prevent any problems.

8. Managing oral chemotherapy regimens gets easier over time.

A lot of patients are scared at first, and ask if someone else can handle their oral medications for them. That’s fine, but we do ask that your primary caretaker be present for the entire lesson on how to administer them.

You don’t need a medical background to do this at home. But it’s critical that you know the whole process, from beginning to end. And, if you’re not the actual patient, you should wear gloves while administering the medications and wash your hands afterwards.

My advice is usually to get a calendar and write down all the days you’ll need particular drugs, especially if their administration schedule is unusual. Not every chemotherapy regimen will be that difficult. But patients need to make sure they’re taking all of their medications on the appropriate days. Over time, it does get easier.

9. Chemotherapy drugs require special disposal methods.

If you end up not using all of a certain type of chemotherapy pill, or you have tubing or other soiled equipment that was used to administer infusion-based chemotherapy, don’t just toss them out with your regular household trash.

Many of the drugs used to treat cancer are considered biohazards and require special handling for disposal. There may be an authorized collection facility nearby that can accept your oral medications. But check with your care team to find out the best way to handle yours.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.