19 September 2016 - Cancer Centre, Old QE Hospital

Deb and Jenny in Lisbon, September 2016

Saw Dr Sanghera, Consultant Oncologist, and Claire Goddard CNS. Visit to start Deb's chemotherapy. Deb is to be given a course of temozolomide on a 28 day cycle. Deb will take a single daily dose of 270 mg for 5 days followed by a recovery period of 23 days. We discussed side effects - sickness, tiredness, and risk to the immune system. Hair loss is unlikely. Deb then signed the consent form.

We next saw Anna, the pharmacist who dispensed the drugs. (This new system when the pharmacist comes to you in the Cancer Centre is a great improvement compared to last time when we had to find our way to the pharmacy and often wait hours for the drugs to be dispensed). The temozolomide will be taken last thing before going to bed. As well as the chemotherapy Deb was given anti-sickness medication to be taken 1 hour before the chemo and again 12 hours after. Anna explained that Deb's immune system could be compromised for 7 to 10 days after taking the chemotherapy and during that time we should be alert for any sign of infection (high temperature, rashes, vomiting etc). We were given a card with numbers to ring if we have any concerns.

Deb now has 3 courses of chemo (we will visit the hospital once per month) and then will have a further MRI scan.

8 September 2016 - Neurosciences Outpatients Department, QE Hospital

Saw Dr Sanghera, Consultant Clinical Oncologist and Fred Berki Clinical Nurse Specialist.

Visit to discuss the MRI scan (No. 37) Deb had on Tuesday 6 September. We compared the latest scan with previous scan taken on 20 July. The latest scan showed the two new tumours had grown. Tumour growth was slow but the change in the 7 week period between scans was clearly visible.

This is very bad news. (To remind you: glioblastoma multiforme (GBM) is one of the most aggressive primary brain tumours. The median survival time of adult patients after diagnosis remains approximately 14 months. Only about 5% of patients survive more than 3 years and reports of survival exceeding 5 years are rare. Survival times following recurrence are even worse. So Deb is a very unusual case).

We reviewed options for treatment. It was agreed that in the first instance Deb would start with a course of temozolomide chemotherapy. This is the chemotherapy Deb had when she was first diagnosed. She tolerated  it well but had side effects of sickness (she will take drugs to counteract this) and tiredness. The chemotherapy will  start in 2 weeks time. Each course will last  a month and consist of a week of treatment followed by a rest period of 3 weeks.

Dr Sanghera hopes the tumour growth will be controlled by this treatment. If not we can consider radiotherapy or surgery.

Deb had blood samples taken. Next appointment will be at the QE Cancer Centre on 19 September to start chemotherapy. We are looking forward to going on our long weekend trip to Lisbon with some good friends.