Completing chemo-radiotherapy and starting adjuvant temozolomide

A guide on what happens now

This document provides a guide for patients who are about to complete their course of radiotherapy and concomitant temozolomide. It will outline what you may expect over the next few weeks and what will happen at your next appointment and during the 6 months of adjuvant temozolomide (chemotherapy) phase.

What can I expect in the first few weeks after completing radiotherapy and concomitant temozolomide?

Side effects from radiotherapy usually reach a peak approximately one to three weeks after completion of treatment and can take several weeks to settle down. Everyone is different and not all patients will experience all the side effects.

Some of the side effects that you may experience are:

Fatigue and reduced energy levels

You are likely to find that the tiredness you have experienced during your treatment continues and may even increase in the weeks after completion of radiotherapy. This may also be worse if you are trying to reduce the dose of Dexamethasone (steroid) you are taking. A few patients experience severe tiredness four to six weeks after completing radiotherapy and this is called somnolence. Tiredness normally settles without the need for any other treatment. For more information and advice on how to cope with and manage tiredness look at the Macmillan Cancer support website (opens in a new tab) or call their support line free on 0808 808 0000 (Monday to Friday, 9am – 8pm)

Worsening headaches, seizures and neurological symptoms

Sometimes the symptoms you have been having as a result of your tumour may seem to get worse in the few weeks after radiotherapy. This is likely to be due to some swelling around the area treated, together with the tiredness you are experiencing. To try to minimise the chance of this happening we normally leave you on the Dexamethasone (steroid) dose that you are on at the end of treatment until your next outpatient appointment. If you or your carer are concerned about the symptoms you should contact us for advice (see telephone contact details at end of the leaflet).

Skin

The radiotherapy skin reaction may get worse in the 10 to 14 days following completion of treatment and then should start to settle down. You should continue to look after your skin, applying moisturising lotion regularly and using a mild shampoo for at least 4 weeks. Also you should continue to wear a hat or scarf to protect the skin from the sun or cold.

The skin behind the ears can be more sensitive to the radiotherapy, please contact us if you notice any blisters or soreness developing in this area because you may need to use an alternative cream which will need to be prescribed by your GP.

Irritation of the external and middle ear

If the radiotherapy target area is close to the ear you may develop a feeling of fullness or feel that the ear is blocked and your hearing may seem muffled. This should settle without intervention a few weeks after treatment but you should avoid using cotton buds or putting anything in the ear. If you develop pain or discharge from the ear or the symptoms don’t settle please contact the team for advice.

Blood counts and infection

You are still at risk of having a low blood count as a result of the chemotherapy in the weeks following the end of treatment. You should continue to contact us if you experience any raised temperatures, abnormal bleeding or possible infections. The 24 hour oncology helpline is 01223 274224.

Medication

You should not take any more temozolomide or co-trimoxazole after the last day of radiotherapy and you should also not need to take any more anti-sickness tablets. You should remain on all other medication unless the doctor tells you to stop or reduce the dose. It is especially important that you don’t stop taking the Dexamethasone (steroid) suddenly and without consulting a member of the team.

Emotions

Some patients can find the first few weeks after treatment a difficult time. You may feel more emotional and miss the daily support of attending the hospital. If you have any concerns or want to discuss your feelings you can call the team on the numbers below or speak to your local GP.

More information, advice and support on dealing with the emotional effects of your diagnosis and treatment can be found on the Macmillan Cancer support website (opens in a new tab) or call their support line free on 0808 808 0000 (Monday to Friday, 9am – 8pm)

What happens next?

MRI scan

We will request an MRI scan to be performed about 4 weeks after the end of your radiotherapy. You should receive this appointment through the post but if you have not received an appointment date please call MRI reception 01223 216667 to arrange. This scan will give us a baseline following radiotherapy to use to compare to future scans. The treatment you have had often makes these scans very difficult to assess at this point and sometimes they may actually look ‘worse’ than the scan you had before your radiotherapy.

Outpatient appointment

You should receive an appointment to attend the neuro-oncology outpatient clinic approximately 4 weeks after the end of the radiotherapy. This is normally on a Tuesday afternoon. Because we need to check your blood counts, review how you are and prescribe your next chemotherapy tablets for you to take home; it can be a long afternoon.

You should aim to arrive by 12:30pm to book in and have some blood tests done. It then normally takes 1 to 2 hours to get your blood results back and normally the doctor wants to see these results before reviewing how you are. If your blood counts and you are OK, and if you wish to continue on the treatment, you will then be prescribed the next chemotherapy tablets which may mean a wait at pharmacy. You should be prepared that this appointment may take the whole afternoon.

Adjuvant temozolomide

The chemotherapy tablet is the same one as you took during radiotherapy (temozolomide). This time you will just take the tablets for 5 days in a row at home and then have 23 days without chemotherapy before coming back for another outpatient appointment and to collect more tablets. Each set of 5 days on chemo plus 23 days off is called a ‘cycle’ and we will aim to give you 6 cycles (6 months) of adjuvant temozolomide.

The dose you will receive in cycle 1 is approximately double the daily dose you had while having radiotherapy. If you experience no problems with cycle 1 the dose is then increased by approximately another 25% and this will be the dose you will receive for the remaining 5 cycles. If you are unsure about what dose you should be taking, please ask a member of the team.

The side effects are similar to those you may have experienced when you took the temozolomide during radiotherapy but because of the higher dose you will be prescribed strong anti-sickness tablets for each day you take the chemo. You will not need to take the co-trimoxazole (antibiotic) during this part of the treatment. You also need to contact us if you experience any raised temperatures, abnormal bleeding or possible infections. The 24 hour oncology helpline is 01223 274224.

Further MRI scans

The usual plan will be to scan you after 3 cycles of the adjuvant temozolomide and then approximately 1 month after completing cycle 6 (the last cycle). We will see you after each scan to discuss the result. Once you have completed this treatment course the doctors will tell you about what happens next and how often you’ll be asked to attend clinic and have further scans. If you have a scan and you don’t have a clinic appointment already booked to discuss the results (within 2 weeks) please contact the team secretary (see number below) to organise an appointment. Our policy is not to discuss scan results over the phone.

Hospital transport

If you are eligible for hospital transport and require it for any appointments this will not automatically be booked. Once you have the date of your appointment (scans or outpatient appointments) you will need to book the transport through your local transport call centre (based on your GP practice address). If you do not already know the call centre number your GP practice or Oncology reception will be able to provide the number.

Further information

If after finishing your radiotherapy or reading this leaflet you have any queries or concerns please contact the team on the following numbers:

• Cambridge University Hospital
  Main switchboard: 01223 245 151
• Kate Burton - Consultant radiographer in neuro-oncology
  Telephone: 01223 216 580
• Neuro-Oncology Clinical Nurse Specialists
  Telephone: 01223 256 667
• Addenbrooke’s medical emergency 24 hour helpline for oncology patients (AOS service)
  Telephone: 01223 274 224
• Neuro-oncology secretary
  Telephone: 01223 586705
• Radiotherapy reception
  Telephone: 01223 216634