Chemotherapy for a brain tumor: the drugs, your blood counts, and the fever rule

The small number of chemotherapy drugs used for brain tumors, one at a time. What each is for, and whether it is pills or an IV. What it does to your blood counts. And the one rule that matters most: what to do if you get a fever.

The short version

Chemotherapy uses drugs to stop tumor cells growing. The ones used most for brain tumors are on this page, and most of them are capsules you take at home rather than something given through an IV. The drugs lower your blood counts, so you will have blood tests all the way through. The one thing to know before you start: a fever during chemotherapy is a phone call right away, not something to sleep on.

What is chemotherapy for a brain tumor?

It is treatment with drugs that kill tumor cells or stop them dividing.

The drugs travel in your blood, so they reach the whole body. That is why they cause effects in places the tumor is not.

Not every chemotherapy drug reaches a brain tumor. The brain has a barrier around it, and some drugs do not get past it in useful amounts. That is part of why the drugs offered for a brain tumor are a particular short list rather than the whole shelf. If you have read about a drug for a different cancer and wondered why nobody has offered it to you, ask. There is usually a reason, and it is a fair question.

There is a second, narrower group of drugs, and they work differently. A targeted drug is built to act on one particular change inside tumor cells, so it only applies if your tumor carries that change. Targeted drugs is the page for those.

Chemotherapy is given in cycles: a period of treatment, then a rest period to let your body recover. How long each one lasts depends on the drug and on your plan.

Most of these drugs are capsules you take at home. One of them is given into a vein at the hospital. One is not a drug you take at all, but wafers the surgeon places during an operation.

Why am I having it?

Chemotherapy is used for brain tumors in three broad situations, and it is worth knowing which is yours.

• Alongside and after radiation, for some tumors, as part of the first course of treatment. Radiation therapy: the mask, the daily visits, and what comes after covers the radiation half.
• After surgery, to deal with what an operation cannot reach. Brain surgery: what happens, and what comes after goes through the operation itself.
• If the tumor comes back, where a different drug may be used from the one you had the first time.

Which drug you are offered depends on what the tumor turned out to be, including the gene results. The words on your gene results explains those one at a time. This is one of the places where the lab report genuinely changes the plan, rather than just describing it.

The drugs, one at a time

Temozolomide

What it is for. The chemotherapy used most often for gliomas. For some of them it is given with radiation, and then after it.

How you take it. Capsules, by mouth, at home. There is no IV and no hospital stay for it.

What it does to you. The common effects are tiredness, feeling sick to your stomach, throwing up, constipation, loss of appetite, and low blood counts. The tiredness has been reported during treatment and for months afterwards. Periods can stop for a while.

The blood counts are the part that shapes your treatment. A low platelet count is the effect that most often limits the dose. Platelets help blood clot, so a low count raises the risk of bleeding and bruising. If a blood test shows it, your team may delay a cycle or lower the dose. Your liver is checked regularly too.

Rarely it causes a more serious blood problem, or liver injury. Your team is watching for both, which is what the blood tests are for.

PCV

What it is. Not one drug but three, given together: procarbazine, lomustine (also written CCNU) and vincristine. The initials are where the name comes from.

What it is for. Some gliomas, and it is particularly associated with oligodendroglioma.

How you take it. Procarbazine and lomustine are capsules you swallow. Vincristine is different: it goes into a vein, either through a thin tube in your arm for the day, or through a line that stays in place for the whole course.

What it does to you. The main problems are low blood counts, throwing up, constipation, effects on the liver, and nerve damage in the hands and feet. That last one comes mainly from the vincristine, and it shows up as numbness, tingling or weakness. Tell your team early if you notice it, because it is one of the things that changes what they do next.

There is a food and drink rule with procarbazine, and it is the one thing on this page you can get wrong at home tonight. Alcohol can cause a reaction with it: flushing in the face and neck, feeling hot, sweating, feeling sick to your stomach, itching and a headache. Some foods can do the same, mostly aged or fermented ones. Ask for the list before your first capsule, and ask whether it covers low-alcohol and alcohol-free drinks too, because it often does.

Be honest about how you are coping with it. One study at a national neuro-oncology center in Ireland looked at a full year of PCVPCV: Three chemotherapy drugs given together: procarbazine, lomustine and vincristine. It is the usual choice after radiation for an oligodendroglioma. See the glossary in people with low-grade gliomaglioma: A tumor that starts in the glial cells. Those are the support cells of the brain and spinal cord. Gliomas are given a grade from 1 to 4. The grade says how the tumor is expected to act. See the glossary. It found it was poorly tolerated. Blood-count problems often caused delays and breaks. Struggling with PCV is not a personal failure. Do not save it up for the next appointment. Changing it is normal and it is part of the plan.

Lomustine on its own

What it is for. Sometimes used by itself, often when a tumor has come back.

How you take it. Capsules by mouth. You take it only occasionally, not every day, because it lowers your blood counts for weeks after each dose. That is the whole reason for the gap, and it is not a sign that your treatment is being rationed or delayed.

What makes it different from temozolomidetemozolomide: A chemotherapy taken as a capsule, used for some brain tumors. Your team checks your blood counts while you are on it. See the glossary. The dip in blood counts arrives late: around four to six weeks after a dose, rather than the two to three weeks that is usual with temozolomide. It also tends to build up over repeated doses. So the blood test that matters most is often the one a month or more after you took the capsules, which is exactly when you feel finished with that dose and least expect a problem.

If the counts do not recover, your team may space the doses further apart, lower them, or change to something else. That is a normal decision, not a setback.

Carmustine wafers

What they are. Small wafers that hold chemotherapy. The surgeon puts them into the space where the tumor was, during the operation. They release the drug into the tissue right around that space, and then dissolve.

Who gets them. Some people having surgery for a high-grade glioma. They are not offered everywhere, and they are not offered to everyone having an operation.

What is honestly known about them, in both directions. Specialists do not agree about how much they help. A review that pooled the studies came out in favor of them for a newly diagnosed high-grade glioma, as long as the right people are chosen for them. European guidelines are more careful. They point out that in the main trial the difference did not hold up once one group of tumors was taken out. Both things are true at the same time. That is why you may hear different views from different doctors.

They can also cause swelling or an infection where they sit, and that is part of why not every surgeon offers them.

One more practical thing, and it is easy to miss. Having wafers can rule you out of some clinical trials afterwards, because the drug they release muddies the results. If wafers come up, ask about that before the operation, not after. Clinical trials covers the rest of that question, and what to ask before you start anything new.

How long does it go on?

This varies more than almost anything else on this page, so ask for your own plan in writing. The general shape:

• Chemotherapy is given in cycles, with a rest period built into each one so your body can recover.
• Some of it runs alongside radiation and finishes when the radiation course does.
• Some of it continues afterwards, in cycles, for months.
• Lomustine is spaced out on purpose, weeks apart, because of the late dip in blood counts.
• Delays are part of it. Cycles get pushed back when blood counts are low. That is expected and planned for.

Ask how many cycles are planned, and what would change that. It is a question with a real answer. Get it written down. On a bad week it helps to be able to look at it.

Which tumors usually get which drug

This is a rough guide and not a prediction about you. Your team decides from your own pathology and gene results.

• Glioblastomaglioblastoma: A glioma that is given grade 4. Grade 4 is the highest grade there is. The tumor grows fast. Treatment usually starts soon after it is found. It often means surgery, and then radiation and chemotherapy. See the glossary, newly diagnosed. Temozolomide, with radiation and after it.
• Glioblastoma that has come back. Often lomustine. Carmustine wafers are sometimes considered if there is another operation.
• Oligodendroglioma. PCV is the combination most linked with it.
• Other gliomas, grade 2 and 3. Temozolomide or PCV, usually after radiation.
• A tumor that spread to the brain from somewhere else. The drugs are picked for the first cancer, not for the brain. Your doctor for that cancer leads.
• Medulloblastoma. Usually a combination, which usually includes cisplatin, vincristine and cyclophosphamide, and some plans add lomustine. For a child under 3 it may be used instead of radiation for a while, rather than alongside it.

If your tumor is not in this list, that does not mean chemotherapy is not for you. It means the list is short and yours needs a conversation.

Your blood counts, and the fever rule

This is the most important section on this page. If you read nothing else, read this.

Why the blood tests happen. Chemotherapy affects the bone marrow, where blood cells are made. Three kinds of cell get counted, and each one matters for a different reason:

• White cells fight infection. Low white cells mean infections take hold more easily and get worse faster. You may see this called neutropenia on your results, or hear your team say your neutrophils are low.
• Platelets help blood clot. Low platelets mean bruising and bleeding.
• Red cells carry oxygen. Low red cells mean tiredness and breathlessness.

The lowest point has a name. Counts fall after chemotherapy and then come back up. The lowest point is called the nadir, and it is usually about seven to ten days after treatment. That is when the risk of a serious infection is highest, and it is why the timing of a temperature matters.

Here is the rule. During chemotherapy, a temperature over 100.4 °F (38 °C) means calling your team right away, at any hour. Not in the morning. Not after seeing how you feel. An infection with low white cells can go from mild to dangerous quickly, and it is treatable when it is caught early.

Call right away for any of these too:

• Chills, or shaking, or drenching sweats.
• New or worsening confusion.
• Dizziness, feeling faint, or falling.
• Chest pain, or trouble breathing even while resting.

Before your first cycle, get three things. Ask for them by name:

1. The number to call after hours, written down, kept where you can see it. Not the clinic's daytime number.
2. Their temperature rule, in their words. Some teams use a slightly different number. Some also ask you to call if your temperature is unusually low, which can be a sign of infection too. Use theirs.
3. A thermometer, and the habit of using it rather than guessing.

Some teams give you a card to carry that tells any doctor you are on chemotherapy. If yours does, keep it with you. It changes how quickly you are seen.

If you are not sure whether to call, call. Nobody on that team minds a phone call about a temperature that turns out to be nothing.

What does a cycle feel like?

Cycles differ by drug, and yours will have its own shape. But there is a common pattern worth knowing, because it repeats and because it trips people up the first time.

The day you take it is usually unremarkable. Feeling sick to your stomach, if it happens, tends to come later that day or the next, which is why the anti-sickness medicine matters more than it seems to on the morning of day one. Tiredness builds over the days that follow rather than arriving at once.

Then, and this is the part that surprises people, you feel worst when you feel finished. Blood counts reach their lowest point about a week to ten days after the dose, when the treatment feels like it is behind you. That is the stretch to be careful in, and it is why the fever rule matters most in a week when nothing is obviously happening.

Then counts recover, you start to feel more like yourself, and the next cycle begins. Many people find the second and third cycles more predictable than the first, simply because they know the shape of it.

Side effects, and what is done about them

Most of these are managed rather than endured, and several of them have a medicine of their own. Bring them up early rather than saving them for the next appointment.

Tiredness is common with all of these drugs, and it is not fixed by one good night. It can carry on for months after treatment ends.

Constipation is one of the common problems with PCV. There is medicine for it, and it is easier to stay ahead of than to fix.

Numbness or tingling in the hands and feet comes mainly from vincristine. Report it as soon as you notice, because it is one of the effects your team acts on rather than waits out.

Hair loss. How much depends on the drug. With PCV it can be all of it, including eyebrows and eyelashes. It usually grows back after treatment finishes.

Effects on the liver are watched for with blood tests rather than felt.

Periods can stop for a while during treatment.

Fertility. If you might want children in the future, ask about it before treatment starts rather than partway through. Your team can tell you whether the drug you are having affects that, and who to talk to about it.

Feeling sick to your stomach, and the medicine for it

Feeling sick to your stomach, or throwing up, is common. Doctors usually prescribe anti-sickness medicine to go with chemotherapy.

The useful thing to ask is when to take it. Anti-sickness medicine is generally easier to stay ahead of than to catch up with, so ask your team whether yours is meant to be taken on a schedule, or before a dose, or only when you feel sick. Ask what to do if it is not working, because there is more than one kind and swapping is normal.

If you cannot keep fluids down, that is a call to your team the same day rather than something to wait out.

Why am I on an antibiotic?

Because of an infection you do not have and they are trying to keep it that way. This surprises almost everyone, and nobody explains it.

Temozolomide given at the same time as radiation lowers one kind of white cell for a long stretch. That leaves you open to an uncommon lung infection. A healthy immune system holds it off without you ever knowing. So you are given an antibiotic to prevent it, through that stretch and usually until those cells come back.

It is not a sign that you have caught something. It is not a sign that anything has gone wrong. It is a precaution taken in advance.

Not every team gives it, and that is a real difference of opinion rather than a mistake. Guidelines have recommended it for years. A recent review of the pooled studies found the infection is rarer than the old advice assumed, and argued for choosing who gets it rather than giving it to everybody. So if your team does not offer it, or stops it, that is a considered position and worth asking about rather than worrying about.

Ask how long you will be on it and what would end it, because "until your counts recover" means a blood test decides, not the calendar. And tell your team about a new rash while you are taking it, right away.

What you need first

Before chemotherapy starts, expect:

• Blood tests, including a full blood count and checks on your liver and kidneys. These are the baseline everything later gets compared against.
• Your pathology and gene results. These decide whether chemotherapy is offered at all and which drug it is. Waiting for your pathology results covers the wait if you are still in it.
• A scan to compare later ones against. Your MRI scan goes through that appointment.
• A conversation about pregnancy and contraception where that applies, and about fertility if you may want children later.

Worth sorting out before day one:

• The after-hours number, written down.
• A thermometer.
• Somebody who knows you are starting, and knows the fever rule too.

For the person caring for someone on chemotherapy

If you are the one driving to the appointments, keeping track of the pills, and lying awake at night worrying about them, this part is for you.

You are allowed to ask questions. In one study, families said they were afraid of annoying the doctor by asking too much. One of them was told by a doctor to stop playing doctor. Ask anyway. Write your questions down before you go, and bring a notepad. Two people in the room hear more than one.

Ask who your first call is. Care comes from a lot of people at once, and it is easy to end up as the only one holding it together. Ask the team: who do I call first? Some teams have one person whose job this is, often a nurse. Get the name and the number.

Get two numbers, and know which one to use. One for work hours, one for nights and weekends. Then ask what counts as "call us today" and what counts as "call an ambulance" for this tumor, and write the answer down where you can see it. If you are not sure which it is, call. Nobody on that team will mind.

If they have seizures, read about them before you need to. What to do when someone has a seizure is the one to know by heart. Living with seizures is about the rest of the time: what is safe, what to change, and driving.

Ask to be shown anything you are sent home to do. In that same study, families were sent home to change dressings and give medicines with no training at all. That is not fair to you. Before you leave the hospital, ask someone to show you. Then do it once while they watch.

Say what you notice. You may see a change before they do. Changes in thinking, mood and behavior can show up to the people close by first. Telling the team is not going behind their back. It is something the team cannot learn any other way.

Look after yourself, and let people help. Eat, sleep, and keep your own appointments. Take a little of the day back for yourself. When someone asks what they can do, give them a real job: a meal, a ride, an hour with the kids. Most people want to help and do not know how to offer.

You can talk to somebody about all of this today. See where to get help.

Chemotherapy is mostly taken at home, which means most of what goes wrong goes wrong at home, in front of you. That is different from surgery and different from radiation.

Learn the fever rule as well as they do. A temperature over 100.4 °F during chemotherapy is a call right away, at any hour. You may be the one who notices they are hot, or shivering, or not making sense. Do not wait for morning, and do not wait to be sure. Have the after-hours number somewhere you can find it in the dark.

Get a thermometer, and use it. A hand on a forehead is a guess. This is the one bit of kit that changes what happens.

Know when the risky window is. Counts are usually at their lowest about a week to ten days after a dose. That is when an infection does the most harm fastest. If the drug is lomustine, the dip comes much later, a month or more after the dose. By then everyone has relaxed.

The pills are a job, and it is your job as much as theirs. These are taken at home, on a schedule, sometimes several drugs at once, and the schedule changes. Write it down where you can both see it. Check it against the pharmacy label each time it changes rather than trusting either of your memories.

Watch for the things they will not mention. Constipation, numbness or tingling in the hands and feet, and not being able to keep food or fluids down all get put up with rather than reported. All three are things the team acts on. If you notice, say it at the appointment.

Delays are normal, and they land harder emotionally than they should. A cycle pushed back for low counts feels like losing ground. It is not. It is the plan working the way it is designed to.

When to call an ambulance. These cannot wait:

• Chest pain, or coughing up blood.
• They are not breathing properly, or are breathless at rest.
• You cannot wake them.

When to call the team right away, at any hour. Not the next morning:

• A temperature over 100.4 °F, or chills, shaking or drenching sweats.
• An unusually low temperature.
• Confusion, or thinking that has changed.
• Dizziness, feeling faint, or falling.
• A new rash, especially if they are on the preventive antibiotic.

When to call the team the same day. Ask for their own version of this list before the first cycle. Generally:

• Being unable to keep fluids down.
• Unusual bruising, or bleeding that does not stop, or blood in vomit or stool.
• Mouth sores that stop them eating or drinking.
• Any new symptom that worries you.

If you are not sure which list something belongs on, call. Treat it as the first one.

Why has my treatment been delayed or stopped?

Being told a cycle is delayed is unsettling, especially when everything so far has been about starting quickly. The reason is usually mundane.

Low blood counts are the commonest. If the counts have not recovered enough, giving the next dose on time would do more harm than waiting. Your team may push the cycle back, lower the dose, or both. That is the monitoring working, not failing.

Treatment also gets changed when side effects are too much. Nerve damage in the hands and feet is a common reason to stop a drug or swap it. Stopping early is how your team keeps it from getting worse, and it often improves once treatment finishes.

A delay is not the tumor winning. A change of drug is not a last resort. Ask what they are waiting for, what number they want to see, and when they will check again. All three have answers. Having them makes the wait easier to sit with.

Who reads it, and how do I get the result?

Two different things get reported back to you, on two different clocks.

Blood counts come back quickly, often the same day. They decide whether the next cycle goes ahead. Ask whether somebody will call you if a result is a problem, or whether no news means proceed as planned. Teams differ, and assuming the wrong one is how people miss a change.

Scans are the slower answer, and they are how anyone judges whether the treatment is doing what it is meant to. Ask when your next scan is and who will go through it with you.

Ask one more thing: whether results appear in your online records before anybody calls you. For many people they do, and reading a scan report alone on a phone is a hard way to find out. If you would rather hear it from a person, say so, and ask them to call you when it lands.

What to ask your team

• Which drug am I having, and what is it meant to do for my tumor?
• Is it capsules at home, or something given at the hospital?
• How often will you check my blood, and who tells me the result?
• What temperature means I call you, and what is the number after hours?
• What anti-sickness medicine will I have, and when should I take it?
• Am I going to be on an antibiotic, and for how long?
• How many cycles are we planning, and what would change that?
• What should I report right away rather than saving for the next visit?
• What happens if my counts are too low on the day?
• Could this affect my fertility, and who do I talk to about it before we start?
• When is my next scan, and who will go through it with me?

Where to go next

• Radiation therapy: the mask, the daily visits, and what comes after for the treatment that often runs alongside this one.
• Brain surgery: what happens, and what comes after for the operation that usually comes first.
• The words on your gene results for the results that decide which drug you are offered.
• Waiting for your pathology results if you are still waiting to hear what the tumor is.
• Your MRI scan for the scans before and after.
• Get help now if you need to talk to a person today.