12 December 2016 - Cancer Centre, Old QEH, Birmingham

Deb has finished her third monthly cycle of chemotherapy and had an MRI scan (No 38) yesterday, 11 December. Today's appointment with Dr Sanghera and Claire (a researcher looking at clinical trials for brain tumours was also present) was to discuss the results of the scan and future treatment.

I was disappointed with the meeting. For Deb and I this was an important event: the results of her first scan since the return of the tumour following 3 months of chemotherapy. But because Deb's scan had taken place the day before Dr Sanghera had not had a chance to look at the results. He thought he could just call Deb in, ask her how she was, find out she was OK and prescribe more chemo. It wasn't till he called up her notes that he saw she had had a scan. He then looked at the scans briefly while the four other people in the room chatted. This is wrong. Scans are difficult to interpret. (They really are 50 shades of grey). Anyway after a couple of minutes Dr Sanghera said that the scans showed that the tumours at worse had stayed the same at best may even have shrunk a little. He showed me the scans but he was flipping so quickly between different sections of the brain taken at different times that I couldn't see properly. Anyway Dr S said they had not grown and I am sure he is right.

Deb's blood was taken but could not be analysed (machine malfunction) straight away. She was given her prescription by the pharmacy but had to wait for a call from Claire to say the blood results were OK and she could go ahead and take the chemo.

So we are back on another 3 months of chemo before a further scan.

MERRY CHRISTMAS EVERYONE

14 November 2016 - Cancer Centre, Old QEH

The second monthly cycle of chemotherapy went better for Deb than the first . - less sickness. This time did not see Dr Sanghera but his colleague 'Charlie' (didn't quite catch his surname, I assume he was a doctor; anyway he sat in Dr Sanghera chair and spoke knowledgeably about brain tumours). Deb's blood test results were good so she was able to start the next cycle of chemo that day. We discussed Deb's headaches (these are more frequent and prolonged but still not very severe). Deb also mentioned she had had five cold sores in the last few weeks and apparently this is a side effect of the chemo. A short appointment, we picked up the chemotherapy from the hospital pharmacy and headed home.

MRI scan to be arranged before next appointment in a months time. Now the results of that will be interesting.

17 October 2016 - Cancer Centre, Old QE Hospital

Deb with Bert on the cob, Lyme Regis, October 2016

Saw Dr Sanghera and Claire Goddard. (These two people have been part of our lives for over 8 years now, I like and trust them both. I regard them as friends (we kiss Claire on entering and leaving the appointment room - is that normal?) I trust their judgement on the live and death matters we discuss.) This was the start of Deb's second month of this course of chemotherapy. A blood test was carried out and was OK. We discussed how Deb had been in the past month - while on chemo Deb had been tired and on occasions had felt sick but generally had felt well. She has also had more frequent headaches and Dr Sanghera checked the back of her eyes. Because Deb had tolerated the chemo well Dr Sanghera decided to increase the dose to 365 mg (the normal expected level for someone of Deb's weight), an increase of 35%. The regime is the same as before with 5 days of chemo followed by 23 days recovery. 

We return in one month for the next course of chemo.

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.

23 August 2016 - Neurosciences Outpatients dept, QE Hospital

Saw Mr Kay, Neurosurgeon and Fred Berki Clinical Nurse Specialist (and key worker) at clinic this morning.

Mr Kay discussed the latest MRI scan and the changes seen in the area of the tumour in Deb's right frontal lobe. Mr Kay said that the changes had been taking place for some time (about a year) but were still small. He thought that, as Deb was well and symptom free, surgery was not the appropriate choice at this time but consideration should be given to a course of chemotherapy in the first instance. He suggested that the tumours needed to be about four times their current size before surgery would be considered. He discussed the risks associated with surgery, especially as the tumours were close to the ventricles in the brain (vessels containing cerebrospinal fluid.)

I asked some questions:- if operation went ahead would gliadel wafers be inserted again, steroid dose after op, how much tumour could be removed, new tumour is slow growing does that mean it is not grade IV? (answer - growth is slow at the moment but could take off at any time)

I felt Mr Kay was offhand with us, I don't think he had read the notes and had only looked at the scan just before we arrived. He wasn't operating so he wasn't really interested.He didn't like me asking questions - perhaps with some justification, my questions were all about an operation that wasn't going to take place. I don't care about his manner the outcome of the meeting was good. Growth is slow, the tumours are small and surgery is not appropriate at the present time.

18 August 2016 - At home

Kate's Graduation 26 July 2016

After our last visit to the QE, Deb's case was discussed at the Multi-Disciplinary Team meeting at which it was decided to delay the onset of any treatment, The delay troubled us and I contacted Claire to find out what was said at the MDT. This is the email exchange:

From: Chris Eaton [mailto:chris.eaton@live.com]
Sent: 08 August 2016 08:03
To: Claire Goddard
Subject: Deb Eaton

Dear Claire,

Sorry to bother you but I am feeling a little anxious after Deb’s last MRI scan.

When we saw Dr Mead the radiologist's report indicated that the GBM had returned and further treatment would be imminent and necessary. Now we have decided to wait. I wonder if you could tell me the outcome of the MDT meeting and why delaying the onset of treatment is considered appropriate.

Many thanks

Chris Eaton

Morning Chris….

I am so sorry about your anxiety.

To be reassured this is very early recurrence.

Mr Kay was not at meeting and the general opinion was that there was no need to rush into treatment and spare Deb from treatments and side effects for  as long as we can.

But for completeness Dr Sanghera is going to write to Mr Kay to gain his opinion as he was the original surgeon.

(Surgery is often done when a patient is symptomatic and a good surgical target is available)

Deb is currently well and is asymptomatic and small target for surgery.

The radiologist reports the scans and make recommendations however I would suggest the best recommendations come from team caring for Deb and who know her and who are attending the meeting so consultants….Dr Sanghera and radiologists and surgeons as a group looking at history and imaging and past treatments and current performance of Deb.

I am sure Dr Sanghera would be happy to see you in clinic and discuss if that would make you both feel more at ease…..

He is on holiday next week but could see you after then?

Let me know and happy to organise

Best wishes

Mrs. Claire Goddard
Macmillan CNS Neuro-oncology

Neurosciences OPD
Neurosurgery - University Hospitals Birmingham NHS Foundation Trust
Queen Elizabeth Hospital, Queen Elizabeth Medical Centre,
Birmingham, B15 2TH

Deb has received letters for two appointments:

1     Tuesday 23 August to see Mr Kay, Neurosurgeon
2     Thursday 1 September to see Dr Sanghera, Consultant Clinical Oncologist

I will update after meeting with Mr Kay

22 July 2016 - Neurosciences Outpatients Department, QE Hospital, Birmingham

Deb in Iceland March 2016

The Return of the Tumour

Last time I wrote I would not put up another post on the blog until there was something to report. Well that time has come and its not good news.

At this last visit to the QE we met Dr Mead, Senior Registrar (Dr Sanghera was on holiday) and Claire Specialist CNS, to discuss the results of Deb's scan taken the day before on 20 July (Deb's 36th scan since radiotherapy). We were shown the latest scan alongside the one taken in March this year. Comparing the 2 scans you could see there were some changes. The changes were small but significant. There were 2 new areas of concern. Both areas were separate and distinct from the old tumour but in the same part of the brain.

The registrar said that they had received the radiologist's report on the scan and the new areas of change were believed to be a return of the glioblastoma tumour. Deb's case will now be discussed at the next Multi Disciplinary Team Meeting (MDT) on Tuesday 26 July and Claire will ring after the meeting to let us know the outcome.

We discussed what options were available and these are basically the same as last time: surgery (with implantation of gliadal wafers), another course of radiotherapy and chemotherapy (or a combination of all three). If surgery is to be considered we will see Dr Kay (the surgeon who carried out Deb's previous debaulking operation) on 2 August.

There are some positives: Deb has had no symptoms and is feeling well. Because of the regular scans the progression of the disease has been caught at an early stage. Deb responded very well to treatment last time so there is no reason to believe she will not respond well again.

Deb and I had got complacent with all of this. It is 8 years and 46 days since Deb was first diagnosed and despite what the doctors said we were starting to believe the cancer would not return. That anxious knot in the pit of my stomach had started to unravel. We talked and planned for the future as though it was all a foregone conclusion. Well the knot is back.

At least we now know what the journey involves but just because it is the second time around it doesn't make the heavy dose of steroids, or the drilling of holes into your scalp, or the drip  of deadly drugs into your body any easier to take.

I will update as necessary.

Chris