Tuesday, 23 August 2016

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.

Thursday, 18 August 2016

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

Friday, 22 July 2016

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.


Monday, 30 November 2015

26 November 2015 - Neurosciences Outpatients Dept, QE Hospital

Deb in Dubrovnik, September 2015

It is over 6 months since I last posted. During that time Deb has had two more MRI scans (32nd and 33rd since her radiotherapy treatment).  The results of both these scans were good, with no visible change in the tumour detected. We saw Dr Sanghera and Fred who were both very relaxed.  It is now 7.5 years since Deb was diagnosed. It is very, very unusual for patients with a glioblastoma brain tumour to survive this long. Usually the radio/chemotherapy stops the tumour growth for a short while but cancer growth soon returns. The path taken by the disease with Deb has been different with no progression after her debaulking operation. Dr Sanghera said there were no medical protocols for patients who have lived this long. However he has suggested that the period between scans could now be increased to 4 months initially and provided there was no change in the tumour this period eventually could be extended to 6 months. Deb was really buoyed up be this news. if the doctors are getting more relaxed then so can we.

It seems pointless for me to keep putting up blog after blog saying nothing has changed. So I propose that from now on I will not put up any futher posts until there is something to report.

Have a merry Christmas and a happy new year. Chris

Monday, 9 March 2015

26 February 2015 - Neurosciences Outpatients Department, QE Hospital

Deb had her latest MRI scan on 8 February (a normal MRI scan - her 31st since radiotherapy). The results from the scan were good.  The tumour size, compared with the previous scan, was unchanged. There were none of the signs of activity as reported in the previous 2 or 3 scans. Whether the increased activity seen previously was real or not is not clear; in any case we can relax again.

On the 28 January, Deb and I attended a Brain Tumour Information Day organised by the Brain Tumour Charity. One of the speakers was Professor Cruickshank, Professor of Neurosurgery at the QE, During his talk he showed the above graph which gives an estimate, for patients with a glioblastoma  tumour, of the numbers  still living a certain amount of time after treatment. The red line is for patients who have radiotherapy alone and the blue line is for patients who receive radiotherapy and the chemotherapy drug temozolomide (like Deb). As you can see only about 20%, ie 1 in 5, patients will survive 3 years or more.  What interested me was the fact that after 3 years the graph appeared to be flat which seems to imply that the number of deaths after 3 years is greatly reduced. I asked Dr Sanghera about this. What does the graph look like at 5, 6 or (like Deb) at 7 years? He said he didn't know; the research had not been done. What we do know is if you survive 5 years then your chances of surviving a further 5 years are greatly improved. 

Friday, 14 November 2014

13 November 2014 - Neurosciences Outpatients Department, QE Hospital

Deb and I on holiday in Perugia, Italy; September 2014
Ok I know its 6 months since I last posted. I have no excuse. This blog is like Deb's tumour: active but only growing very slowly.

Since the last post Deb has had 2 scans (the 29th and 30th since radiotherapy). One scan was on the 27th August (which was a MRS - magnetic resonance spectroscopy - scan) and the other a normal MRI scan  on the 2 November (a Sunday!). The results of the scans were the same in both cases. In each case, the radiologists report stated that there were signs of increased tumour activity.  However the activity was slight.  As for the first time when this activity was reported Dr Sanghera said that whatever was happening; it wasn't normal GBM growth. It was much too slow, If it it had been normal grade IV tumour growth, it would be much more clear and unambiguous. As before he repeated that he did not want to start any treatment whilst growth was slow and Deb was not showing any symptoms. On screen we compared the results of the latest scan with one taken a year ago, With the untrained eye it was difficult to see much difference. The area where the tumour was located did look slightly different as it was more 'fuzzy'on the latest scan.

If treatment was considered it would be either more surgery (not a pleasant prospect: the thought of having more holes drilled into your skull) or chemotherapy. Chemotherapy works by targeting cells that are dividing. Rapidly dividing cells (like cancer cells) are therefore more likely to be killed. If the tumour is only growing slowly - as with Deb's - chemo would not be as effective.

So it was decided we do nothing. Deb's next scan is scheduled for 3 months time.

Thursday, 22 May 2014

22 May 2014 - Neurosciences Outpatients Department, QE Hospital

   Bert on the beach at Southwold, Suffolk

Today saw Dr Sanghera (and Fred and Claire) to get results of Deb's MRI scan (28th scan since radiotherapy). The last scan - 2 months ago - had shown some signs of tumour progression and we approached this meeting with some anxiety and trepidation.

This time Deb had two scans: first the standard MRI scan and secondly a magnetic resonance spectroscopy (MRS) scan (MRI gives information about where a tumour is; MRS can in theory tell doctors how aggressive it is.) For Deb the results from the MRS scan showed some increase in metabolism within the tumour. However the results of ordinary scan (although how any technique which uses superconducting magnets at the temperature of liquid helium (-269C) can be called 'ordinary' I don't know) showed no change since last time.  The results indicated that maybe something is happening in the tumour but its development is slow. Dr Sanghera thought there was enough uncertainty to delay the onset of treatment until the results were decisive.

So for the time being we do nothing. Deb is to have a further scan in 3 months time. Tomorrow, on Deb's birthday, is the 6th anniversary of her diagnosis. So we can celebrate. She is still doing well. Symptoms from the tumour are minimal and any changes appear to be slow in development.