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.

Thursday, 27 March 2014

28 March 2014 - Neurosciences Outpatients Department. QE Hospital

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

6 June 2013 - Neurosciences OPD, QE Hospital

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

5 March 2013 - Neurosciences OPD, New QE Hospital

Kate and Ed's leaving party (Kate, Chris, Chris - Ed's Dad, Deb, Jane - Ed's Mum, Ed)
Deb had her MRI scan ( 23 since RT) last Thursday (on 28/02/13) and today we saw Dr Sanghera at Neurosciences OPD. The results from the scan were again very good. Dr Sanghera showed the image from the latest MRI scan (a horizontal slice through Deb's head) alongside the same image from a scan in November 2011 (just after Deb had stopped taking PCV chemotherapy). The tumour in the latest scan was visibly smaller and not as clearly defined. Dr Sanghera said Deb was 'amazing'. Inter alia we discussed:

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.