2008 - The beginning of the Sea Kayaking interest (Click photos to enlarge)

The report from a followup MRI scan in May stated "Review of the previous study from May 2007 shows no increase in size of the lesion in the right frontal lobe". In other words I got the "all clear"!








Me and John working on the Guillemot kayak


















Half way through the timber work on the Guillemot kayak















The first strip in place on the Guillemot kayak

















Karl starting the abseil on Leaning Peak, Mt Barney
















Michael nearing the top of Leaning Peak, Mt Barney
















The Abseil off the Southern side of Leaning Peak, Mt Barney















Egg rock at Binna Burra which Michael and I climbed

Cheryl in her new sea kayak in the Maroochy river at Cotton Tree.














Drinks with Hector and Natasha, Christmas 2008















Cheryl, Michael, Ethan and Robyn at Cania Gorge














Red-wing parrots at Cania Gorge










Video of paddling at the Cavalli Islands, North Island New Zealand.





Video of the Cape Reinga walkway North Island, New Zealand

2007 - Bushwalking (click photos to enlarge)

John on the walk from Mt May to Mt Maroon

Crossing the Noosa River with Gary and Catherine, on our way to the Noosa sandpatch.

Me and Cheryl at Shallow Bay hut on the Kepler track, New Zealand

Returning from Luxmore hut after snow closed the track beyond Luxmore. Kepler track, New Zealand.

On the Kepler track, New Zealand.

At Barney Creek, SE Queensland.

At Barney Creek with Cheryl, Michael and Gary, SE Queensland.

2007 - Cycling (click photos to enlarge)

Nearing the end of the 2007 Noosa Enduro



















1,000 cyclists start the 2007 Miles to Maloolaba ride.







One great outcome from my operation in November 2006 was that I could not drive for some nine months until everything stabilised. This led me to start cycling to work and before long my good mates Gary and Michael were pressuring me to join their latest craze - Mountain Biking! Well I went and bought a mountain bike and got into it. Soon a new goal and challange emerged, The Noosa Enduro a 100km mountain bike event. See http://www.usmevents.com.au/enduro/index.html

The event was held in July and I managed to finish the course in 7 hrs. It was the longest endurance event I have ever done.

Later in the year Cheryl joined me and 1,000 other riders for an annual week-long cycling event run by Cycling Queensland. It was the Miles to Maloolaba bike ride over a distance of 540km. Even though Cheryl had not been doing much cycling I thought she would be okay if we stuck to a steady pace, and to her credit she did manage to complete the whole journey.

2007 - My Story for the Brian Tumour Support Service

After the second operation I contacted the Queensland Cancer Council and joined their Brain Tumour Support Service. It was great to be able to discuss matters with others who are in a similar, and often much worse, situation. The newsletter is always a good read, especially the stories of the people in the group. It inspired me to put pen to paper myself and my story also appeared in the newsletter.

Here it is:

13 March 2007

I was pretty shell shocked in November when I found out that I had a recurrence of the brain tumour that I thought I had beaten. In the space of just two weeks I went from a state of thinking that I was cured of a brain tumour that was removed many years ago and that I had a long life ahead of me, to one where I was desperately combing through the research articles looking for survival statistics that would give me some hope of living more than just a few years.

My story starts in 1990 when my girlfriend at that time informed me that I was going to the doctor because “something really weird happened last night”. It turned out that I had a grand mal epileptic seizure in my sleep. After many tests it was decided that I had developed epilepsy as an adult which was unusual but not unknown. One of the tests at that time was a CT Scan of the head which showed a dark shadow on the right frontal lobe. It was dismissed as probably the result of a bump on the head as a child. I started taking dilantin to control the seizures but twelve months later I had another one in my sleep, so we increased the dose. Then I had another one nine months after that and the dose was increased again. We took a holiday in Bali over the 1991 Christmas / New Year period but the seizures in my sleep returned and by the time we returned to Australia they were occurring weekly. Once again the dilantin dose was increased and the seizures were brought under control. When more seizures occurred in 1992 and 1993, we decided that we wanted the tests to be repeated in an attempt to find out why the epilepsy was steadily getting worse. That time I had an MRI scan and the conclusion was that “...an atypical low grade cystic glial or neuronal tumour such as a ganglioglioma could not be excluded.”

That MRI report was a shock for me as it was the first mention of the possibility of a brain tumour. Once I saw that report I just wanted the thing out of my head as fast as possible! Dr Michael Redmond operated on me in Brisbane's Princess Alexandra hospital and removed a four centimeter, triangular tumour. The pathology tests identified it as an Astrocytoma grade 2.

Annual CT scans through to 1999 showed no signs of regrowth and after a further scan in 2001 came up clear my neurologist declared that I was cured and there was no need for further checks. During this time I got on with my life running half-marathons, bush walking, rock climbing, studying Spanish and taking long service leave to visit South America from January to April 2006. Relationships changed and I met the wonderful woman I now live with, Cheryl Horner. I am so lucky to have met Cheryl as our love for each other has supported us through our current crisis.

Things started to go pear-shaped at the end of October last year, a few days after I returned from a great climbing trip to Mt Arapiles in Victoria with a bunch of mates. A seizure snuck up on me in my sleep again (don't you hate those bloody things...) so the Doc sent me off to get a blood test to check the dilantin level and a CT scan as it had been five years since my last one. It turned out that the dilantin level was low, but alarm bells really went off when the CT scan reported a recurrence of the previously treated glioma. An MRI confirmed the finding and once again I found myself on the operating table with Dr Redmond about to go digging around inside my head.

The operation was successful although, interestingly, this time the pathology on the tumour has identified it as a Grade 2 Oligodendroglioma (ie. Not the Astrocytoma finding in 1993).

What is really getting to me this time, and I would welcome any feedback on this, is that now I am being told that I am lucky to have survived for 13 years, that the tumour will definitely come back and there is no cure! Being the analytical type that I am, I have been searching the literature to confirm what I have been told. There are heaps of studies with varying results which seem to suggest that the five year survival rate is around the 60-70% mark and the ten year survival rate is only 40-50%. My doctors are agreeing with these figures so now I am thinking that I have already beaten the odds to last this long and the future looks pretty grim. However, I am trying to stay positive and I am drawing a lot of inspiration from reading the survival stories of others.

Following the surgery we found ourselves working through the dilemma associated with a low grade glioma of what to do next. There was a strong argument to do nothing but monitor the situation and treat the tumour again when (not if) it returns. The other school of thought was to reduce the number of remaining tumour cells through chemotherapy using temozolomide thus giving my own immune system the maximum chance of getting on top of this thing. The problems with the latter approach were that there is a lack of long-term studies on the use of temozolomide for low grade gliomas that support that approach, the chemotherapy could take 12 months to be effective (K. Hoang-Xuan et al, JOURNAL OF CLINICAL ONCOLOGY, VOLUME 22 NUMBER 15 AUGUST 1 2004), the Australian Government does not subsidise the use of temozolomide for low grade gliomas which is a problem when it would cost AUD3,000 per month and finally, it was unlikely to be effective unless there were mutations on the first and nineteenth chromosomes. Apparently the p arm is often missing from the first and the q arm from the nineteenth (the so called 1p and 19q deletions).

At that stage I had been referred to Associate Professor Paul Mainwaring at the Mater Oncology Centre so he ordered a further pathology test and we found out that my tumour did not have the 1p/19q deletions. Oh well, so much for that idea!

I have to tell you about Aspro Mainwaring. He is one of the most enthusiastic blokes I have ever met. He works at a million miles per hour and you have to be quick to keep up with him. At my first appointment I trotted in with a few pertinent papers that I had found on temozolomide and he was very excited that I had already done some research. He then turned his computer screen so I could see it and proceeded to show me various good papers that I could read. That suited me just fine as I enjoy finding out about new things. And at the end of the session he gave me some “homework” reading before our next appointment. What a pleasure to find someone who encourages patients to do their own research.

The options for my low grade tumour were just about exhausted apart from experimental drugs. Paul Mainwaring has done a lot of research on anti-angiogenesis medication and he offered to help me with that option if I was wished. It first required yet another pathology test, this time for PDGF (Platelet Derived Growth Factor) in the tumour. There was trouble getting a result on the PDGF test as it is not commonly performed, and in the meantime my own reading about the proposed drug Gleevec put me right off the whole idea so I did not pursue that option.

Now I am in that delightful state known as “watch and wait”. Nothing more is to be done (other than regular scans to monitor the situation) until the disease gets worse. If it changes to a malignant tumour then we can swing into action with Chemotherapy and/or Radiotherapy. With just about any other disease it is best to diagnose and treat it early, but with these low grade brain tumours that does not seem to be the case.

I am thankful for those years I have already shared with Cheryl and I am getting on with life once again and treasuring every extra day now. I have returned to work for four days per week which gives me a long weekend every week to get out bushwalking and enjoying the outdoors as much as possible. One thing I will say in favour of having a brain tumour is that it really makes you focus on what is important in life and for me that certainly is not the 9 to 5 grind. As a motivator, a brain tumour is hard to beat!

Email: laurieandcheryl@hotmail.com

2006 (click photos to enlarge)

It was a great year which started out in Cusco Peru! Cheryl and I took four months long service leave and headed off to South America for our big adventure together. (See the left column of this blog for a link to our S.A. travel blog.)








Dinner with our host family in Cusco, Peru.


















Trekking in Patagonia with Cheryl.













Cheryl and Barry on a walk at Mt Cordeaux.















Michael on Acapulco Gold at Mt Arapiles, Victoria.














Climbing the iconic Agamemnon at Mt Arapiles, Victoria

The year did finish with a surprise. About a week after my return from a climbing trip to Mt Arapiles, Victoria I had a seizure in my sleep. A follow up MRI scan revealed that my oligo had returned as big as ever and below the position it was in 1993. A second craniotomy soon sorted things out, although I must be getting a bit old because it took a three whole months to fully recover from the operation and regain my fitness.

As always, my work colleagues were terrific support for me. Many of them visited me in hospital and they sent me the beautiful card below.

Get Well card from the beautiful people I work with at Griffith University.

2005 (click photos to enlarge)

I thought I was cured at this time and had forgotten all about my old mate, the oligo.

Michael on Blabbermouth (16) Mt Tibrogargan

Michael and me after completing Blabbermouth, Mt Tibrogargan.

Karl nearing the crater rim on the South Route of Mt Taranaki, New Zealand.

Looking down the iced up scree we had just ascended on the South Route, to Syme hut on Fantham Peak below.

2003 (click photos to enlarge)

With Cheryl while we were walking the Traverse - Sabine circuit at Nelson Lakes National Park, New Zealand. Michael and Robyn were also with us on this walk.

Ritcho on the upper Tasman glacier, New Zealand.

Mt Maroon - 2002

Climbing "Jesabel" (16) Mt Maroon

A potted history from the medical perspective

1990 First seizure during sleep









Detail from a CT scan done Sept 1990 showing a dark shadow which would have been the tumour but was dismissed at the time.





1991 Increased dose of Dilantin after second seizure

1992-1993 More seizures with increasing frequency

July 1993 CT Scan

Sept 1993 MRI Scan reports “…an atypical low grade cystic glial or neuronal tumour such as a ganglioglioma could not be excluded”










An image from the MRI scan done September 1993. The tumour is clearly visible as the white area on the left side of the image. (Note that the image is the view looking up from underneath and the tumour is on the right side of the brain.)






Nov 1993 Craniotomy performed by Dr Michael Redmond at PA Hospital. Pathology reported an astrocytoma grade 2.

Mar 1994 Follow up CT scan – “No evidence of residual or recurrent tumor”

Mar 1995 Follow up CT scan – “No evidence of tumour recurrence”

May 1995 Follow up CT scan – “No evidence of tumour recurrence”

April 1997 Follow up CT scan – “No evidence of tumour recurrence”

July 1998 Follow up CT scan – “No evidence of tumour recurrence”

Aug 1999 Follow up CT scan – “No change…”

Aug 2001 Follow up CT scan – “No change…”

Oct 2006 Another seizure while asleep. Tests showed low level of Dilantin. CT scan showed “… local recurrence of the previously treated glioma”

Nov 2006 MRI Scan reports “…3.6 x 3 x 3.6cm lesion…suggestive of recurrent right frontal glioma”

Nov 2006 Second Craniotomy performed by Dr Michael Redmond at Mater Private Hospital. Pathology reported oligodendroglioma grade 2.

Dec 2006 Supplementary pathology report (FISH study) ordered by Dr Paul Mainwaring shows no deletions of 1p or 19q

Dec 2006 Follow-up MRI Scan at Mater Public Radiology reports “…appearances are suggestive of residual low grade glioma”











An MRI image taken one month after surgery in 2006.









May 2007 Follow-up MRI Scan at Mater Public Radiology reports “…appearances are consistent with recurrent tumour.” Further evaluation by Michael Redmond found that enlargement referred to the cavity within the tumour and no evidence of growth of tumour.

Nov 2007 Follow-up MRI Scan at Mater Public Radiology

May 2008 Follow-up MRI Scan at Mater Public Radiology

Jan 2009 Follow-up MRI Scan at Mater Public Radiology reports “…on MRS there is a shift in the NAA/Choline ratio suggesting active disease adjacent to the corpus callosum…slight progression in comparison with examination of 1/5/08…” My Neurologist, Dr Noel Saines, observes that I am very fit and healthy and suggests a further period of "Watch and Wait".

May 2009

MRI image showing proximity of second recurrence of tumour to Corpus Collosum

Decide to get second opinion from Dr David Walker of Briz Brain & Spine who I had heard speak at the Brain Tumour Support Service of the Queensland Cancer Council and was impressed by his manner. David sent me for a PET scan to get an idea on whether it was still a low-grade tumour which gave a negative result for malignacy. However, alarmingly, he noted that the tumour was close to the Corpus Collosum and he said the while it was currently "eminently resectible", if it invades the Corpus Collosum it may progress to the other side of the brain with unknown consequences. He advised surgery followed up with radiation therapy. I also saw Radiation Oncologist Dr David Schlect and he suggested the same course of action. Thirdly, I consulted Dr Michael Redmond who had performed my first two craniotomies in 1993 and 2006. He agreed with all that I have been told by David Walker and David Schlect. Specifically that:

- the tumour has grown since May 2007
- it does not appear to be malignant yet
- it will become inoperable if left to invade the corpus callosum
- I should have surgery followed by radiation therapy
- I should act sooner rather than later

Further, he recommended that the surgery should be as aggressive as possible this time.

May29, 2009
Craniotomy #3 performed at St Andrew's Hospital, Brisbane by Dr David Walker, Briz Brain & Spine

July15, 2009
Began combined Radiation and Chemo (temozolomide) therapy

August 28, 2009
Completed combined Radiation (160 Gray delivered in 30 partial doses) and Chemo therapy

March, 2010
Started 12 month Chemotherapy  (temozolomide) using a 28-day cycle of 5 days on drug followed by 23 days with no drug. Then a blood test before proceeding with next cycle.

March 2011
Completed 12 month Chemotherapy