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Having a brain tumour is complex. Treating a brain tumour is complex. Increasingly, treatment options are being ‘personalised’ to meet the needs of the patient. The options are surgery, radiation therapy, and chemotherapy. Having ‘chemo’ will probably conjure up an image of a terribly sick, bald person. There have been major improvements in chemotherapy so that most regimens are well tolerated. Many people have a combination of treatments and the choice of treatment depends mainly on the following:
- The type and grade of brain tumor
- Its location in the brain
- Its size
- Your age and general health
For some types of brain cancer, the doctor also needs to know whether cancer cells were found in the cerebrospinal fluid.
Cancer therapy often damages healthy cells and tissues and therefore side effects are common. Before treatment starts, ask your oncologist about possible side effects and how treatment may change your normal activities.
These are things you may want to ask before you begin treatment:
- What are my treatment choices? Which do you recommend for me? Why?
- What are the expected benefits of each kind of treatment?
- What can I do to prepare for treatment?
- Will I need to stay in the hospital? If so, for how long?
- What are the risks and possible side effects of each treatment? How can side effects be managed?
- How will treatment affect my normal activities? What is the chance that I will have to learn how to walk, speak, read, or write after treatment?
- Would a research study (clinical trial) be appropriate for me?
Can you recommend other doctors who could give me a second opinion about my treatment options?
Chemotherapy
What is it?A treatment which uses drugs to treat cancer cells. Sometimes more than one drug is used; this is called combination chemotherapy.
Should I have chemotherapy?
Not a simple response. I told you it was complex; each case has to be assessed individually. To help you decide, ask about the drug’s main side effects and trust in your healthcare team. Be guided by this.
The side effects of chemotherapy depend mainly on which drugs are given and how much. Common side effects include nausea and vomiting, loss of appetite, headache, fever and chills, and weakness. If the drugs lower the levels of healthy blood cells, you're more likely to get infections, bruise or bleed easily, and feel very weak and tired. You will be checked for low levels of blood cells. Some side effects may be relieved with medicine.
How chemotherapy works
Chemotherapy directly attacks brain tumour cells and disrupts the growth of cancer cells. It is not used to treat all brain tumours and sometimes it is used to shrink a tumour or slow its growth; it won’t always get rid of a tumour. It is generally used to treat a malignant tumour. The blood brain barrier causes problems in the delivery of chemotherapy. The blood brain barrier is there to protect the brain from toxic substances so trying to deliver chemotherapy agents to the site is not easy.
How is chemotherapy given?
Usually in cycles. This gives the patient time for the healthy cells to recover in between treatments. The frequency and length of the treatments depends on the factors mentioned previously. Treatment – rest cycles are often repeated over several months.
What are the chemotherapeutic agents?
Main agents used are PCV, temozolomide, carboplatin, and carmustine. Until recently, PCV has been the mainstay of treatment and temozolomide has been a recent addition. Avastin is the new kid on the block but the jury is still out as to whether this is an effective agent.
| Agent | What it is | How administered | Side effects |
| PCV: chemotherapy combination of more than one drug – procarbazine + lomustine (CCNU)+vincristine=PCV. | Procarbazine and CCNU are oral medications and vincristine is given intravenously | Orally and intravenously over a 28 day cycle | Fatigue, nerve discomfort, jaw pain and ringing in your ears. |
| Temozolomide | An alkylating agent that crosses the blood brain barrier and has been approved by NICE. It has shown promise for the long-term management of gliomas and may also be useful in medulloblastomas and metastatic tumours | One to six capsules a few days a month for a year or more. Treatment-rest cycles can last for several months or years. Side effects include | Fatigue, nausea and constipation. |
| Carmustine | A nitrosourea agent which disrupts the DNA of tumour cells to stop them from proliferating. | Intravenously or by biodegradable implants (wafers), which are inserted into the cavity left once the brain tumour has been removed. The agent is then released directly into the tumour. The wafers dissolve over the next two to three weeks. If administered intravenously, you will be an outpatient and the cycle usually repeats every 6 weeks. | Wafers may cause seizures, cerebral oedema and problems with wound healing. Side effects include fatigue, nausea and constipation. |
| Avastin: also called bevacizumab | Anti-angiogenic therapy: it inhibits the growth of blood vessels which feed tumour | Intravenously. You cannot have Avastin if you are having surgery. This has not been approved by NICE and therefore may not be funded by the Primary Care Trust (PCT). | Headache, confusion, vision problems, feeling light-headed, fainting, and seizure |
New drugs are being developed and researched. These tend to fall into several camps and would normally be in a clinical trial:
- Agents that stop cell division
- Anti-angiogenic therapy: these drugs inhibit the growth of blood vessels which feed tumour;
- Differentiating agents: these drugs aim to interrupt the process by which a tumour cell diverges from the life cycle of a normal cell so that it becomes malignant.
- Immunotherapy: a seek and destroy mission. Immunotherapeutic agents include interferons, natural proteins that are toxic to cancerous cells and specific antibodies. This treatment can improve the immune system’s ability to locate and destroy tumour cells.
- Gene therapy: the transfer of genetic material to a tumour cell to destroy the cell or to stop cell growth.
- Targeted molecular therapies: these agents block a specific growth pathway which a tumour cell may use.
- Intratumoural therapies: this involves inserting new biological therapies directly into the tumour.
How are these agents taken?
Injection into a vein (intravenously) – the most common form of delivery. You won’t need to be admitted into hospital for this.
By mouth (orally) – some chemotherapy drugs are given in pill or capsule form.
Injection into an artery (intra-arterially) – not common. This method has fallen out of favour as it has been associated with greater toxicity to the brain.
Chemobrain
Common sense would tell you that any drugs delivered to the brain must be harmful. Cancer survivors struggling with the long-term effects from their treatments cannot help but wonder if there is a cure for the cure.
This is a new area of research. After chemotherapy hair grows back, fatigue abates but a spaced out feeling lingers – impaired memory and an inability to concentrate or multitask dogs some patients. It is suggested that that the cause lies deep within the brain, in regions where immature and newborn cells (progenitor cells) are proliferating. These self-renewing cells, part of the complex structures needed for memory and other normal functions, are particularly vulnerable to toxic chemotherapy drugs. On the other hand the very stress of a brain tumour diagnosis or depression may also contribute to memory loss, so it is hard to say whether chemobrain exists or is exaggerated.
(Adapted from The Cloud of Chemotherapy, Ellen Clegg, The Boston Globe, 5 April 2009).
And this is David Bailey has to say about chemobrain. David is just wonderful - have a look at his site and listen to his inspirational music here.
So today I learned a brand new word
I’m pretty sure it’s one I’ve heard
At first, I thought it sounded flip
Something you’d find in a comic strip
Turns out, it’s something that is real
And today I learned it’s one I feel
I think it lacks imagination
But it does describe my situation:
“Chemo-brain” is how it’s said
It set an ambush for my head
In this battle that I fight
The ‘fog of war’ now has new light
This fog was a crazy kind:
This fog settled in my mind
Where I once could see, I now was blind
What once was clear, now cloaked in haze;
I stumbled through the last few days
Every moment felt so strange
Like time itself had rearranged
The way she normally advances
And I was running out of chances
Now I hurry up and wait
For the day the fog will lift
Til then, each day is still a gift
Did I say day? I meant each minute
And this one here, I’m glad I’m in it.
And yes, I’m glad that you are too
The only thing we have to do
Is cherish it and not complain.
That’s how we beat the chemo brain
David Bailey July 2009
A NICE word
The National Institute for Health and Clinical Excellence (NICE) is an independent body set up by the Government to assess medicines and treatments. It gives guidance to the NHS about how drugs should be used.
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Radiation Therapy
What is it?Radiation therapy kills brain tumour cells with high-energy x-rays, gamma rays, or protons. It usually follows surgery. The radiation kills tumour cells that may remain in the area. Sometimes, people who can't have surgery have radiation therapy instead. It may also be given in combination with chemotherapy.
Should I have radiotherapy?
Even if the tumour has been removed, radiotherapy can be recommended to keep hidden cells from growing. This should destroy left over cells and prevent a recurrence of growth. There is a suggestion that, several years after radiotherapy treatment, another brain tumour could develop because of this treatment. This is rare. But you should take all factors into consideration. Again, talk with your doctors, trust them and be guided by them.
How does radiotherapy work?
Radiation treatments take advantage of the fact that healthy tissue repairs damage in about 8 hours, so that regular low to moderate doses of radiation can be delivered daily. Diseased tissue cannot repair like this, so eventually the tumour cells die as they cannot reproduce effectively. Tumour cells may still show up but they have lost the power to divide.
The amount delivered to the brain is limited by how much radiation normal tissue can tolerate. Limits are well researched.
Radiation is measured in units called Gray (Gy) or centigray (cGy). The amount of overall dose and amount to be given each day will depend on the tumour type.
How is radiation therapy given?
Little and often! Usually treatment is scheduled Monday to Friday so you will need to pitch up at the hospital every day, with weekends off. Dates and times are usually given in advance and sometimes you can work with the planning team to fit in around your commitments. However, before you get to your first dose there is a significant of preparation to be done. This can take a month, but if you have had surgery you will need this time to recover and gather your strength for this treatment. Regard radiation therapy as the equivalent of having another round of major surgery.
By now you will have met your radiation oncologist. They will discuss your case each week in the MDT meetings. You will need to go to some planning sessions so that all the measurements can be taken. These are called simulations, when the mapping is done to figure out how best to arrange the radiation beams and how best to protect the healthy tissue. If you are having radiotherapy, the chances are that you will need to wear a transparent Perspex mask, made bespoke for you, which is clamped to the table to hold your head in place whilst you are receiving the treatment. To be honest, having the mask made was worse than the actual treatment for me. The very worse bit? It lasted about one minute. I couldn’t see, I couldn’t move and I couldn’t speak. The straps were being ‘welded’ onto the mask by my ears and it was very hot, burning my ears. I had to wiggle my hands to let my husband know that something was wrong so that he could alert the nurse. After this the whole thing was a breeze.
The mask will enable you to breathe and see normally but it can feel claustrophobic. You will only need to wear it for a few minutes at a time. If you are having whole head radiotherapy you will not need a mask.
Before each session of radiation treatment is given, you will need to put in a mouth guard to protect your gums. Then you will be positioned carefully on a table and the mask fitted. You will then be left alone in the room whilst the kit moves around you, zapping away. It is not in the least painful but you will need to keep still. You will be able to talk to the radiographer who will keep a close eye on you from the next room.
What are the different types of radiation treatment?
Doctors use external and internal types of radiation therapy to treat brain tumours.
External beam radiation therapy
Fractionated external beam radiation therapy (EBRT) is the most common method of radiation therapy used for people with brain tumours. A large machine outside the body aims beams of radiation at the head. Because cancer cells may invade normal tissue around a tumour, the radiation may be aimed at the tumour and nearby brain tissue, or at the entire brain. Some people will also need radiation aimed at the spinal cord.
EBRT also includes the following. Not all of these are yet standard practice in the UK:
- 3-dimensional conformal radiation therapy (3DCRT): this is best for patients whose condition requires treatment that extends to a margin around the tumour to account for microscopic disease. This type of treatment uses computers to closely target the brain tumor to lessen the damage to healthy tissue. Images are used in a 3D model so that the beams can be arranged in a 3D space. Peter Black describes it as being like 3 to 4 torchlight beams being shone from different directions but at one spot. The light is most intense where the beams meet. But on its own, each beam is relatively weak and passes through normal tissue without much effect.
- Intensity-modulated radiation therapy (IMRT): similar to 3DCRT and is appropriate for both benign and malignant tumours. IMRT uses radiation blocking to sculpt the shape of a ‘dose’ around sensitive structures e.g. the optic nerve. It takes a bit longer to deliver because of the complexity, so about 15 to 45 minutes per treatment.
- Stereotactic radiosurgery (SRS): radiosurgery is effective on brain tumours, which are discrete, well encapsulated and quite small, so less then 3 to 4 cm. Narrow beams of x-rays or gamma rays are directed at the tumor from different angles. For this procedure, you wear a rigid head frame. The therapy may be given during a single visit (stereotactic radiosurgery) or over several visits. You may also hear these being referred to as Gamma Knife and Cyberknife. These are the commercial names, like Hoover is for vacuum cleaners.
There are some differences between the two. The Cyberknife is a low energy linear accelerator and does not require the patient to be placed in a frame fixed to the skull. It is frameless SRS. The Gamma Knife is good for particularly small targets and is given after a radiation source helmet is placed on the patient’s head.
Don’t be misled by the words surgery and knife. There is no invasive surgery, so no knife. In this type of treatment though the beams converge on a single point – the tumour. There is no margin added.
- Proton beam radiation therapy: the source of radiation is protons rather than x-rays. The doctor aims the proton beam at the tumor. The dose of radiation to normal tissue from a proton beam is less than the dose from an x-ray beam. All protons of a given energy have a certain range; no proton penetrates beyond that distance, so this treatment is good in cases where there is a need for the radiation dose to fall off to zero after it hits the target. In conformal therapy there is exit radiation beyond the tumour, which is why you lose your hair on the side where the beam leaves your head. Proton beam therapy is incredibly expensive. At the moment there are two proton beam machines in the UK but these can only be used for eye cancer. People who need this treatment have to go the USA. The treatment is delivered as conformal therapy and as radiosurgery.
Internal radiation therapy (implant radiation therapy or brachytherapy):
Internal radiation isn't commonly used for treating brain tumors and is under study. The radiation comes from radioactive material usually contained in very small implants called seeds. The seeds are placed inside the brain and give off radiation for months. They don't need to be removed once the radiation is gone.
Side effects and useful pointers:
During your treatment, you should only use fragance free and mild soap. So nothing on your hair like gel, or colouring. E45 cream is an excellent moisturizer to use on your skin, which will become burnt.
You will probably not feel any side effects for at least two weeks. Then the following starts to happen:
Hair loss – this is gradual. It thins and then becomes patchy, usually where the beam leaves your head. Apart from affecting appearance, it makes you notice change in temperatures. It will grow back; it might have a different texture but you won’t be bald for ever.
Thrush – if the beam is near your mouth you may find that it becomes sore. Tell your nurse; they can provide things to alleviate this.
Nausea – you may be sick or feel sick, particularly if the beam is catching your ear. Again, don’t suffer in silence. Anti-sickness medication will bring relief.
Skin irritation – your scalp may become red, dry and tender. Apply moisturizers after your treatment; not before. Your health care team can suggest ways to relieve these problems.
Ear congestion - if the beam is passing through your ear, this will become dry and then irritated towards the end and beyond your treatment. You may find that your ear is ‘leaking’. Again, see your doctor who will provide ear drops. My ear has never fully recovered two years on; my hearing is not so good and the ear remains dry.
Fatigue – it is important to stay active. Some people continue to work. However, you must rest when you need to. People warned me that 4 to 6 weeks AFTER the treatment has finished I would feel really tired. This lasted about a month; having a shower was a supreme effort and I had to lie down afterwards. A course of radiotherapy is the equivalent as having another round of major surgery. Listen to your body.
Brain swelling – sometimes, but not often, radiation therapy causes brain tissue to swell. You may get a headache or feel pressure. Your health care team will watch for signs of this problem. They can provide medicine to reduce the discomfort. Radiation sometimes kills healthy brain tissue. Although rare, this side effect can cause headaches, nausea, seizures, or even death. Call your doctor immediately if you experience any symptoms which are new or different.
Weight loss – you will lose weight. This is probably the only time when you will be told it is Ok to eat foods which are high in fat. Eat a little and often. Trifle for breakfast is good. Guinness is excellent – good for hair and cell renewal. I lived on Guinness. And still do.
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