British Heart Foundation 100 mile Bike Ride around Norwich - Sunday 27 May 2012

28 February 2012 - Neurosciences OPD, New QE Hospital

Deb - 13 January 2012 - Abingdon

Three months since the last post and sorry to be so boring but this entry will be almost identical to the last one.  Deb is still doing really well and her tumour is still stable with no signs of further growth.

On 28th February visited QEH for an appointment with Dr Sanghera to review Deb's latest scan results.

1 MRI Scan

Deb had her last MRI scan (19th since RT) on 31 January. The scan results were again excellent. Dr Sanghera was actually smiling when he bought up Deb's latest scan. He put it on the screen with the result from 6 months ago and there was no discernible difference between the two scans. So despite Deb not being on any treatment the tumour is still not doing anything.

2 Steroids

On 31 January Deb has also had a Short Synacthen Test to measure her body's ability to generate steroids (A Synacthen Test uses a special chemical to test how well the adrenal glands make a hormone called cortisol. It involves stimulating the adrenal glands and then checking to see if they respond. Prolonged use of artificial steroids can often knock out the body's own cortisol production.) The results of the test showed that Deb's body was still producing some cortisol so it agreed that Deb would come off her steroid medication. This has to be done gradually and Deb will reduce her dose by 0.5mg per week over the next 4 weeks. (She may not be able to tolerate this and if she gets extremely tired she is put her dose back up.)

3 Seizures

The only other medication Deb is on relating directly to her brain tumour is phenytoin which prevents seizures. Deb'd need to take this is to be reviewed and she will be referred to a neurologist for a specialist opinion.

4 Next Appointment

Next appointment is on 22 May 2012 to see Dr Sanghera. Hopefully I will have nothing to report before then.

29 November 2011 - Neurosciences Outpatients Department, New QE

Three months since the last post and Deb is still doing really well. Visited the new Queen Elizabeth Outpatients department today for an appointment with Dr Sanghera to review Deb's progress and get results of the last MRI scan. Outpatients at the new hospital is like an airport. You check in electronically on a touch screen and report to the first waiting room. You wait for your name to come up on another screen and you then move forward to a second waiting room where you sit until called to see the doctor. It seemed to work well even though I forgot my passport.


1) MRI Scan


Deb had her MRI scan (18th since RT) on 21 November. The scan results were excellent. There was no discernible sign of tumour growth. The tumour has now been stable since Deb stopped taking PCV chemotherapy at the end of May. In fact the tumour seems to have been stable with no signs of growth since Deb started the PCV at the beginning of the year. This is great news. I again asked Dr Sanghera why this had happened given that we could still see bright active areas on the scan. (these are areas with developed blood supplies to feed active tumour cells). He said we are not always sure what we are looking at on the scan: the bright areas could be due to some failure of blood vessels caused by radiotherapy or chemotherapy and perhaps were not all active tumour. He also explained that although Deb had been classified with a Glioblastoma Multiforme Grade IV, this classification covered a mixture of cell mutations. A typical GBM would stop responding to treatment after a short while but some (like Deb's) seem to respond better because of the cell type within the tumour. 


2) Seizures


Since we last saw Dr Sanghera Deb has had four 'fainting episodes'. Two on the 24 September (while we were at Patrick and Liz's wedding) and two in mid October. The last episode was more of a fit that a faint and occurred after Deb had started to reduce her anti-convulsant medication (phenytoin). These episodes were discussed at length and Dr Sanghera agreed that Deb should maintain her phenytoin dose at 300mg. He also arranged for Deb to have a blood test to monitor her phenytoin levels. 


3) Steroids


Although Deb has tolerated her steroid (dexamethazone) well. Dr S thought it appropriate for her to be referred to an endocrinologist for a Short Synacthen Test - a test to check the amount of cortisol (cortisol is a steroid hormone vital for good health) in your body. For more information see: http://www.patient.co.uk/health/Synacthen-Test.htm 


4) Next appointment


Next appointment  is set for Tuesday 28 February. MRI scan will take place before the appointment. We all feel we can now relax and enjoy a good Christmas.

The End of the Road

The intrepid riders at the finish line with Brighton Beach in the background.

'Do it for Charity' London to Brighton Cycle Ride - 11 September 2011

Dear All,

Many, many thanks for your support. I raised a total of £755 for Brain Tumour UK.

I did the ride with 7 friends and between us we have raised over £2000.

The ride was harder than I expected. It is 54 miles with several nasty hills (most of which I had to walk up part of the way) including 1) How Lane in Chipstead 2) Church Hill past Nutfield Marsh 3) Turners Hill and 4) The Ditchling Beacon. The Beacon is more like a cliff face than an actual road you can drive up but it is a really great feeling when you arrive at the top, see the sea sparkling in the distance and know it is all down hill from here.

We were really lucky with the weather. I spent the night before the ride in a camper van on a camp site in Crystal Palace and as I listened to the rain drumming on the roof I thought about the next day with trepidation. But it was bright and sunny the whole way. Apart from the hills, the traffic and dodging the other cyclists it was a great day.

We are already discussing what to do next year.

Once again, many thanks to you all.

Chris

LONDON TO BRIGHTON CYCLE 2011

Only 5 days to go.


I have kitted out my bike (tools, spares, drinks bottle, new pump etc.) I have sorted out the logistics. I have trained to a peak of fitness. Bring on Ditchling Beacon, I say.


Many thanks to all who have already made a donation. But if you haven't done so and would like to give to brain tumour research, just click on the link.


http://www.doitforcharity.com/ChrisE

6 September 2011 - Neuroscience Outpatient Department, Old QE

Deb on holiday - somewhere on the coastal path between Woolacombe and Mortehoe, North Devon

Since the last post Deb has been really well. Throughout the summer she has continued to lose weight (something which has pleased Deb very much) and has been very active. In fact she has been bored and looking for things to do. Even her dizzy spells have seemed less frequent recently.

Today saw Dr Sanghera to discuss result of latest MRI scan which Deb had on 25 August (her 17th since RT).

The news again was good. The tumour was about the same size as the last scan (30 June). So no discernible tumour growth in 2 months. Dr Sanghera said he had seen this before in some patients. The chemotherapy hits the tumour hard and causes a long term effect on tumour growth which continues even when there is no longer chemotherapy in the body. 

It was agreed that Deb would continue without chemo and the progress of the tumour would be monitored by scanning. The next scan will be in 2 months time. Next appointment to see Dr Sanghera is on 6 December at 10:30. 

We also reviewed the other drugs Deb is taking. It was agreed that Deb could be 'weaned off' phenytoin (this is an anti-convulsant drug. Deb has never fitted but was put on this as a precautionary measure after her debaulking surgery). Deb will also stop taking ranitidine (medication to stop acid reflux - a side effect of steroids). Steroid dose will remain the same (2mg per day).  Because Deb has been on steroids for over 3 years, Dr Sanghera recommended that Deb saw her GP for a review, for instance further bone scans may be appropriate.