Thursday, 22 May 2014
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.
Thursday, 27 March 2014
|Deb and I at Marco Pierre White's restaurant, The Cube, Birmingham on my birthday|
OK, I know I haven't updated the blog for 9 months but that is because nothing changed. Deb had scans in August and November and the tumour stayed dormant. However Deb had another MRI scan on 12 March (her 27th since radiotherapy) and today we met Dr Sanghera to get the results. This time the news was worrying. The radiologist's report stated that the tumour was more active than on the scan taken 3 months previously. And you could see this on the screen. The tumour was about the same size but the white 'active' area around the edge of the tumour was more pronounced. Dr Sanghera played down the significance of this. He said that the tumour growth was minimal, scans can often be difficult to interpret and we had seen false results before. He did not intend to restart chemotherapy now but would put Deb in for another scan in 2 months time and start chemo then if necessary,
We also discussed Deb's forthcoming operation to have her gall bladder removed. Dr Sanghera thought Deb should still go ahead with this. It was him implying there was some doubt about whether Deb should proceed that unnerved me. We were instantly back in the realm of the terminal illness where every decision has to take on the added dimension of time.
Still tomorrow we are off on holiday to Suffolk for a week. Plenty of walking the dog, supping beer and leisurely dinners.
Monday, 24 June 2013
Sam and Chris in San Francisco
Deb had her MRI scan (24th since RT) on 24.5.13. At the 6 June appointment we saw Claire, the Clinical Nurse Specialist, not Dr Sanghera (which is another good sign that even the doctors are starting to relax a little). The results of the scan were again good. The tumour had remained stable and there were no signs of progression.
We also discussed Deb's continued use of the anti-convulsant medication Phenytoin. Deb had a blood test at the hospital and her phenytoin levels were satisfactory. As a result Deb will continue on the phenytoin. She has recently got her driving license back and is enjoying the freedom having a car brings.
Next scan: September 2013
Update since last post
16 - 23.3.13 Sam touring East Coast USA with Booka Shade
23.3.13 Deb and Chris' 30th wedding anniversary party
13 - 21.4.13 Sam touring West Coast USA with BS
22.4 - 9.5.13 Chris and Sam tour of California
Tuesday, 5 March 2013
|Kate and Ed's leaving party (Kate, Chris, Chris - Ed's Dad, Deb, Jane - Ed's Mum, Ed)|
1 The time between scans Although Deb's tumour has been stable for some time, Dr Sanghera still wants a scan every 3 months. This will allow any progression of the tumour to be picked up at an early stage. However it was agreed that Deb would only see Dr S every 6 months and for in betwen scan results Deb will attend a clinic run by the Clinical Nurse Specialists (Fred and Claire).
2 Phenytoin This anti convulsant is the only medicine Deb is taking in relation to her brain tumour. Deb asked if she could come off it. This is not something you can do suddenly (it would take about a year of gradually reducing the dose) and while on the reduction (and for 6 months after stopping) Deb would not be able to drive. Deb has no side effects (that we know about) from taking the phenytoin and will make a decision at the next appointment. By then Deb may have got her license back - we should hear any day now - and maybe having tasted independence will want to continue driving.
The next scan will be in June 2013.
Update since last post
27/12/12 - 08/01/13 Sam touring Australia with Booka Shade
25/01/13 Kate finished at Carluccio's
11/02/13 Kate and Ed leave for travels in far east
20/02/13 Chris has first bike ride since accident
Next posting in June 2013.
Tuesday, 11 December 2012
Deb and Bert walking the coastal path near Dumfries, Scotland
Deb had her latest scan (22 since RT) last Friday (on 07/12/12) and today saw Dr Sanghera at Neurosciences Outpatients Department. Recently Deb has suffered from a number of headaches and she was concerned that they were due to tumour progression. So it was with an even greater sense of foreboding that she had approached this latest MRI scan and subsequent review with the consultant. However this anxiety was misplaced. The results from the MRI were very good. The tumour is still stable and showed no change from the last scan in August. Dr Sanghera was also reassuring about Deb's headaches. If they had been pressure headaches caused by the mass effect of the tumour (ie tumour growth causing compression of the brain) the pain would have been more severe and persistent and often occurring in the morning. Debs headaches could have been caused by the radiotherapy or chemotherapy but were not due to the tumour.
I was unable to go to the hospital with Deb (for the first time in over 4 years) and Kate went instead. (Last week I came off my bike while cycling along the icy lanes of Staffordshire and fractured my pelvis. So I sit at home feeling sorry for myself surrounded by the paraphernalia of old age - Zimmer frames, toilet modifications, bath seats etc...),
Deb has applied to get her driving license back but is still awaiting to hear from the DVLA,
The next scan is due in March.
Update since last post :
07/09 Attended Terence and Katherine's wedding
25/09 Took delivery of new car BMW Series 1, 116i
03/10 Sam enrolled on PhD, University of Hull (The objective of this research is to create a portfolio of interactive, non- linear compositions in the form of site-specific
08-13/10 Holiday in Dumfries and Galloway
26/11 Kate hands in notice at Carluccios prior to going travelling next year.
05/12 Chris falls off bike and fractures pelvis.
So unless anything changes I will not be posting again until after the scan in March next year.
I wish you all a very merry Christmas and a happy New Year.
Tuesday, 4 September 2012
Deb and I outside the trulli in Puglia, Southern Italy
My apologies. it is 6 months since the last post and my only excuse is that nothing much has changed. This is GREAT NEWS. Deb continues to be well. The tumour is dormant and is showing no signs of further growth. To bring you up to date:
1 Visited the QEH today for an appointment with Dr Sanghera. Since the last post Deb has had 2 MRI scans (on 18 May and 31 August. Scans 20 & 21 since RT). Both scans show no tumour growth. It is now over a year since Deb stopped taking chemotherapy and throughout this time the tumour has been stable with no signs of progression.
2 As mentioned in the last post, Deb has come off her steroid medication. She finally stopped on 5 May 2012. Dexamethazone, the synthetic steroid Deb was taking, is 26 times more potent than the naturally occurring steroid - cortisol. It is taken by those with brain tumours to reduce oedema but has the side effect of blocking the hypothalamic-pituitary-adrenal axis. (The HPA regulates many body processes including digestion, the immune system, mood and emotions and energy storage and expenditure.) So it is good to see Deb back to her normal self.
3 The only medication Deb is still taking related to her brain tumour is phenytoin to prevent seizures. Deb has not had any 'episodes' for over a year and although Dr Sanghera recommended that Deb keep taking the drug he thought she could reapply for her driving license (taken from her at diagnosis).
4 Next appointment and MRI scan is in 3 months.
12/03 Attended 'Medicine and Me' Brain Tumour Conference.
19-23/03 Holiday in the Gower, South Wales
14-18/05 Visit to Kay and Mike in Aberaeron, S. Wales
13/05 Villa narrowly avoid relegation from the Premiership
27/05 100 mile cycle event around Norwich.
06/06 Renewed Villa season tickets for 2012/13.
12-19/06 Holiday in Puglia, Southern Italy.
22/07 Bradley Wiggins wins the Tour de France
21-23/08 Visit to Chris and Syd in Weymouth.