27 July 2009 - Appointment at QE Hospital

Deb had her fifth MRI scan since the radiotherapy treatment yesterday on 26 July. Today's visit to the QE was to see Dr Sanghera and get the results.

MRI Scan

MRI scan was carried out on a Sunday - yes a Sunday. Its good to see the NHS making full use of expensive resources. Today we got the results of the scan and it was more good news. The scan showed that the active part of the tumour (the grade IV part) was still stable and was slightly smaller in size than 2 months ago. This is now 6 months without any significant progression of the disease. The low grade part of the tumour was also slightly smaller than at the last scan. Dr Sanghera was pleased with the progress and following Deb's good blood test results prescribed another month of continuous chemotherapy.

Results of Multi Disciplinary Team Meeting

At the last appointment with Dr Sanghera we had again discussed whether surgery was appropriate and this option had been discussed at an MDT meeting. Mr Kay, the neurosurgeon, said he could remove the active part of the tumour (or at least the active bit we can see on the scan).The opinion of the team was that surgery would not improve Deb's prognosis but may have some benefits in reducing the mass effect from the tumour and oedema (fluid around the tumour) There are risks from surgery and the balance of opinion thought that while Deb was responding well to the temozolomide treatment surgery was not the best option. However Deb and I are to have a meeting with Mr Kay to discuss the issue.

Steroids

Following the last appointment with Dr Sanghera, Deb dropped her steroid dose from 3 mg per day to 2 mg. After 10 days to 2 weeks she found she was suffering from increasing dizziness and after discussion with the clinical nurse specialist went back up to 3 mg. This seems to be about the right level for her. I asked if oedema could be seen on the scan (the tumour creates lots of fluid in the brain) and if so could we use the scan to monitor the effectiveness of the steroid dose. Dr Sanghera showed us another view of the scan which clearly showed the oedema around the mass of the tumour but Deb's symptoms are a more reliable way of deciding what dose of steroids is appropriate.

Drug trials

Following discussion of drug trials at the Conference we raised this with Dr Sanghera. The only trial currently ongoing that could have been relevant is the 'Regal' study (which is using a new drug cediramib with lomustine) but this is used when a tumour has returned after initial treatment and not appropriate for Deb.

Chemotherapy

I asked how long Deb could continue on the chemotherapy? Dr Sanghera said Deb was tolerating the drug well and we would continue with the continuous dose until it was obvious it was no longer effective. In the long term (12 - 18 months) chemotherapy can have adverse effects on the bone marrow and we may have to stop the treatment if this becomes a factor.

Everything continues as before. Next appointment we may see a Dr Sheriff as Dr Sanghera is away. Next MRI scan is due in 2 months but a longer period (3 months) between scans may be considered if tumour continues to remain stable.

19 July 2009 - Deb and sisters at the Race for Life, Hereford Racecourse

7 - 8 July 2009 Brain Tumour UK Annual Conference

On 7-8 July Deb and I attended the Brain Tumour UK Annual Conference held in association with University Hospital Birmingham. The conference which took place at the Abbey Hotel and Country Club, Redditch, was aimed at brain tumour sufferers, their families and friends. I don't intend to write in detail about the conference programme - if you want to find out more the conference presentations will be on the Brain Tumour UK website in a few weeks (http://www.braintumouruk.org.uk/index.htm). The conference included sessions on the

• identification of tumours (it is often difficult to identify the grade and type of tumour from the biopsy. In a recent study a number of neuropathologists were asked to identify tumours from a set of samples. There was only agreement in 52% of the cases. This is a difficult and complex area and the results are very subjective. However Deb's tumour, the GBM IV, is easy to identify, and not one where there is doubt.)
• current NHS treatment (the current standards are defined in the NICE guidance on Cancer Services - Improving Outcomes for People with Brain and Other CNS Tumours. See http://www.nice.org.uk/nicemedia/pdf/CSG_brain_manual.pdf. This guidance requires specialist clinics to be set up, decisions on treatment to be made by a multi-disciplinary team and the use of Specialist Clinical Oncology Nurses. Deb's treatment is fully in line with the guidance but according to others at the conference there are variations in practice across the country.)
• sessions on the latest research into brain tumour treatment, chemotherapy drugs and clinical trials currently ongoing.

It was along and tiring 2 days but well worth it. Some of the things I liked about the conference:

1 The concept of a conference which allows patients and carers to get together with professional staff in a non-medical environment and talk informally about the disease is an excellent idea. When you see your consultant at hospital they are always running late and don't have time to discuss general issues. You could do this at the conference. And because you are not talking specifically about you it is a good venue to discuss sensitive issues like palliative care and end of life planning. If other types of cancer and serious illness don't have these types of conferences - they should.

2 The speakers at the conference concentrated on the scientific method. Drugs and technologies which have been proved by peer-reviewed scientifically based research to improve outcomes. I like this. Not a foot rubbing, crystal gazing herbalist in sight. When I was at school I remember kids with braces on their legs because of the effects of polio, I was seriously ill with whooping cough, my mother nearly died from diphtheria. All diseases which have been eradicated by the application of science. Now we seem to want whatever is new - irrespective of what it costs or whether it has been through clinical trials. The attitude is: if it is available I should have it. And of course the drug companies encourage this. Its wrong. We must stick with rigorous scientific methods of evaluation for new treatments.

3 I learnt a lot from the sessions on new developments in chemotherapy for treatment of brain tumours. Research is being carried out into the molecular basis of cancer and has shown how the chromosomes in a glioma cancer cell are damaged and mutated. New treatments will target the pathways within each cell that allow the disease to take hold. In the future people with brain tumours will have their DNA analysed and will then be provided with a drug designed specifically for their tumour. The stuff of miracles.