Oligo-Lucky

The Rio Tinto Ride to Conquer Cancer 2012

2011-11-24T23:23:00.000-08:00

I have entered the 2012 Ride to Conquer Cancer. A distance of 200KM over two days on 18/19 August 2012. Not too hard but enough to give me a new training Goal. The deal is that I need to raise $2,500 to do the ride.

So please help me to fight cancer at:

http://br12.conquercancer.org.au/site/TR?px=1063091&fr_id=1050&pg=personal

Brisbane to Gold Coast Bike Challenge

2011-10-16T04:55:00.000-07:00

Last weekend Michael and I rode in the 100Km Brisbane to Gold Coast bicycle challenge. It was a sunny day so I got absolutely roasted by the sun when the course turned due East along the Hope Island road. My legs were cramping by the end and Michael was certainly getting away from me on the hills. Looks like I still have a long way to go to get my pre-chemo fitness back again. Anyway, Michael was kind enough to wait for the "old fella" and we crossed the finish together four hours after starting. A great day!

Bridge to Brisbane Run

2011-09-12T04:10:00.000-07:00

Yesterday I competed in the Bridge to Brisbane 10Km Fun Run. This time I was way back with all the old codgers sponsored by nursing homes and hiding their walking frames, but I finished in one hour and thirteen minutes, even if I did walk a few times. Now I've managed to do that I will have to keep the training up for another twelve months and run it properly in 2012.

Temodal - The unexpected side-effects

2011-05-10T01:55:00.000-07:00

Click on photos to enlarge.

BEFORE CHEMO:That is me on the right at 70kgs in late 2009.

AFTER CHEMO: weighing 80kgs in March 2011 - 10kgs overweight with a fat gut! I have some work ahead of me to get rid of that 'food baby'...

Now I know that everyone reacts differently to chemotherapy, so my experiences will not necessarily be the same as the next person's. However, I would have been interested in reading this before I started so I might as well share it with the world.

Nausea - the literature talks a lot about nausea so I was expecting this one. Of course, they always tell you that you will be taking anti-nausea medication to manage it and that is true. My experience was that the only thing that worked was Zofran. And here is a tip my Oncologist Dr Paul Mainwaring told me: Take the Zofran half an hour before you take the Temodal. It seems obvious in hindsight, but at first I did not know what I was doing, so I just lined up all my tablets and took them all at once! - Not good!!!

The other thing I discovered about the nausea was that, for me at least, I found that the nausea was always at its worst when I had an empty stomach. As a consequence I started snacking a lot of the time to keep the nausea at bay.

Tiredness - The literature talks about this side effect as well. But I was not prepared for the absolutely overwhelming tiredness that I experienced. I have been pretty active in the past but I found that it took an enoumous amount of mental discipline to get myself out there doing things during chemotherapy. Fortunately, my mates rallied around and made sure that I was still doing the odd bush walk and bike ride with them.

Weight Gain - Now this is something that I certainly was not expecting! The effects of the snacking associated with the nausea being worse on an empty stomach plus the tiredness (both described above) resulted in consuming way too much food for what I was burning off in exercise. The photos before and after Chemo show the result: a 10 kg weight gain in 12 months.

No blood problems - Strangely enough, the side effect most commonly described in the literature did not occur once for me in the 12 cycles I undertook. Every month I had a blood test and every month Dr Mainwaring would tell me that the 'bloods' (i.e. the results) were great! By the end I was hoping that there would be bad result so I could have some time off. Alas, that was not to be...

Cycle #12, Finally crossing the Finish Line

2011-03-11T22:46:00.000-08:00

After a visit to my Oncologist yesterday where my blood tests showed everything to be normal, I have been given the go ahead to start my twelveth (and FINAL) dose of Temodal (temozolomide) next week. As you can see from the size of my gut in the photo, I have gained a lot of weight in the past year from being so sluggish. That was one of the side-effects I was not expecting, so I will do another post at the very end to talk about the side-effects they don't tell you about. It might be useful for those readers considering starting a course of treatment with Temodal.

Starting Chemo Cycle #9

2010-12-06T02:12:00.000-08:00

I have delayed the start of cycle number nine until today, 6 December 2010, so I could fit in a bush walk with Michael Weare on the week-end just gone. It was a very wet walk at Mt Barney to survey the lower section of the Eagles Ridge route. We saw some interesting granite country and vowed to return next year after this therapy is over and I will hopefully have more energy.

The usual monthly blood test was done last week and showed that my counts were all in the normal range so the next cycle can proceed as planned. My oncologist, Dr Mainwaring , is very pleased with my progress. I'm just happy that the end of this marathon treatment is now in sight! The last cycle will be in March 2011.

A Quick trip to Hayman Island for my B'day & cycle#5

2010-09-15T02:30:00.000-07:00

This is the view of Langford Is. from the summit of Hayman Island.

For my Birthday in the first week of August, Cheryl organised a short stay at Beautiful Hayman Island in the Whitsunday Islands. Unfortunatley, because we delayed the start of

the cycle, it ended up coincided with my five days of Temozolomide for cycle #5, but I was not too sick and had plenty of good distractions like walking the island trails and snorkelling.

Cheryl at the lookout above the boat harbour.

Tired of being tired

2010-05-31T03:04:00.000-07:00

Here I am halfway through my third cycle of Temodal and I can't get over how tired I feel all the time. It does not matter how much sleep I have, I always want more. I find that to do anything active requires enormous mental discipline.Yesterday I did get myself over to the cliffs at Kangaroo Point and managed to climb, on a top rope, a fairly easy climb (Samson's Pillar-Australian grade 16, or about a 5.10a in the USA decimal system) that I have done many times before, so that was good but it showed me how much fitness I have lost.

I am getting so fat from lack of exercise that I am disgusted in myself and even though it was pretty cold this morning, I rode my bike to work to burn up a bit of that fat.

Is this common for Temodal? I assume that my body is tired because it is so busy repairing the damage being done by the Temodal. It looks like I need to write this year off as far as energetic activities go. Ah well, so be it, at least I'm alive. 2011 is shaping up to be a big year of catching up. The trouble is that I keep getting older!

Cycle #3 of Chemotherapy begins

2010-05-17T02:55:00.000-07:00

The photo shows the packaging of my daily dose of 300mg of Temodal that I take each day during the five days I take the treatment, with the all-important Zofran anti-nausea tablets in the box on the right.

Today I visited my oncologist Dr Paul Mainwaring to have a blood test before starting the first five days of the twenty eight day cycle. I take the Temodal on the first five days, then nothing for 23 days to recover a bit. Each month I have a blood test to check for any drop in my red or white blood cell count. Today's result showed that I am still going strong, so on with the treatment!

Cycle #2 last month did not go so well... It got off to a bad start when I saw Dr Mainwaring and found out that the Zofan prescription that he gave me at the start of cycle #1 was actually six month's worth. However, because there were 30 day's worth of tablets and the cycle was 28 days, I assumed that I was to take them every day for the whole cycle. Wrong! And because these drugs are subsidised by the Government there is a quota on how many he can prescribe. He was able to prescribe enough for one per day (rather than two) over the five days of the Temodal on cycle #2. So that's what I took! In an unfortunate bit of timing, My boss, the Pro Vice-chancellor of Information Services, Linda O'Brien, happened to invite the members of a review panel and myself (I was acting as secretary to the panel) to diner at a fancy restaurant the first night of my five days of Temodal. You have to take the Temodal half an hour before eating, so I took my three Temodal tablets and my single zofran, then jumped into a cab and arrived at the restaurant. Because I was early, the helpful waiter gave me some carbonated water to drink while waiting for the others. That water must have churned up the contents of my stomach because half an hour later I started to feel waves of nausea washing over me. Linda arrived, and while I was chatting to her things started to get worse! Suddenly I had to excuse myself and ask the waiter for directions to the bathroom. I make a dash and as I arrived at a wash basin the three Temodal once again saw the light of day. Sorry Australian tax payers, I just wasted that subsidised medicine!!! Luckily, Linda is a very lovely person and understands what I have been going through. I said my hurried good-byes and caught a cab home. Unbelievably, the cab driver was used to vomiting passengers and offered me a plastic bag and a roll of paper towels. Phew what a relieft that was! Of course, Cheryl was surprised to see me back home so soon and in such bad shape. I had another three hours of throwing up before, mercifully, I fell into an exhausted sleep. I did manage to get to work for another two days that week but had to take the third one off sick.

Anyway, on to cycle#3 now and it should go better this time, as Today Dr Mainingwaring gave me perscriptions for more Zofran than I had last month. Also, he explained that it is best to take the Zofran half an hour before the Temodal (I have been taking them all at once until now).

Chemotherapy has started

2010-04-12T04:07:00.000-07:00

I have now started on a twelve month course of chemotherapy using the drug Temozolomide (Temodal) to mop up any remaining tumour cells and possibly even reduce the size of the remaining tumour. My Oncologist is Dr Paul Mainwaring at the Mater Hospital here in Brisbane. I am on a 28 day cycle where I take the Temodal for five days then have 23 days with no Temodal. I am also taking the anti-nausea drug Zofran for the whole 28 days to control the nausea which is a common side-effect of the Temodal. This week is the fourth week of the first cycle and so far all is going well.

St James Walkway, Lewis Pass - New Zealand

2009-11-02T14:10:00.000-08:00

Starting the St James Walkway after a fresh dump of snow the night before.

Trekking again (Click photos to enlarge)

2009-10-26T15:27:00.000-07:00

The Snow-covered NZ Alps stretch out to the North as
we approached the S Island of New Zealand

Cheryl and Barry walking through the flowering gorse at the beginning of
the Silver Peaks track near Dunedin (photo used with permission of Dianne Hendry).

Unfortunately, the Silver Peaks track deteriorated
into a slippery bog after a short distance (photo used with permission of Dianne Hendry).

The weather forecast was for clearing showers, however what we experienced was just showers with no sign of clearing. As there have been a number of rescues in this area recently, we took the cautious option and decided to turn back after we encountered high winds on the ridges near pulpit rock (photo used with permission of Dianne Hendry).

Cheryl and I are once again in New Zealand to do some more trekking in what must be one of the world's best bush walking locations - The South Island of New Zealand. It was tremendously exciting to see the Southern Alps as we approached the coast of the South Island. We are here to do some more trekking in this bush walker's paradise.

Our good friends Barry and Di were at the airport to greet us. The original plan was to walk the Milford track before the official season started on 27 October. Unfortunately, recent heavy snow falls have created avalanche danger that has closed the track. So instead we attempted a local Dunedin walk to Jubilee Hut in the Silver Peaks area.When the weather forecast was for clearing showers we set off on our walk. It was pretty muddy for a lot of the way to Pulpit Rock and the showers continued throughout the day. Approaching Pulpit Rock the wind was similar to what we had encountered in Patagonia, blowing us off balance and absolutely freezing! After a quick conference we decided that the safest thing to do was to return to the car while we still had daylight.

Over the Radiation Hurdle and the next one looms large ahead

2009-09-10T02:49:00.000-07:00

It has been a tough couple of weeks since I finished the 30 days of Chemo/Radiation therapy. I now have a one month break with no therapy to give my body a chance to recover. I thought that this would be an easy time, but in reality I'm finding it very hard to remain positive because I find myself in a kind of limbo. When I was working through the radiation I guess I had a clear goal and a daily routine that kept me going. Now I find that I am worrying too much about the future, about the medical expenses and every little thing. It's getting a bit out of control and even though I know it is irrational, I can't stop doing it. I have even been waking at two or three in the morning and have to read a book to get back to sleep. The shrink thinks it is a normal response under the circumstances and put me on the higher dose of anti-depressant earlier this week. I am slowly calming down but it will still take some time to return to normal. It 's another hurdle to get over so I'll just have to hang in there and sweat it out I suppose. I wonder if anyone else has experienced this after Radiation therapy?

Radiation Therapy Completed

2009-08-31T04:12:00.000-07:00

On Friday I finally had radiation dose number 30, the final one which completed the total dose of 160 Gray of X-ray radiation exposure. In the photo you can see my positioning mask tucked under my arm. It all went remarkably well apart from a few episodes when I ran out of the anti-nausea drug zofran. I now have a one month rest from the chemo therapy and I am really looking forward to that.

The end is in sight- Only 5 days of radiation to go

2009-08-21T22:08:00.000-07:00

As I approach the final week of the six week combined radiation and Chemo therapy, the patchy hair loss from the radiation is now obvious as you can see in the photo. I must say that this this hair loss gives me some comfort that the therapy is being effective at killing the fast growing cells. If the hair cells are dying, that makes me more hopeful that the tumour cells are also dying.

Climbing again at Kangaroo Point

2009-08-05T04:51:00.000-07:00

Now that I have the nausea caused by the combined chemo and radiation therapy under control again with Zofran, I have found that my legs and arms are still strong enough to return to climbing. So, for the last two Wednesday evenings I have returned to the regular gang of climbers. Because there is still a small chance of having a seizure I have restricted myself to climbing only. Not belaying, because it would be too big a risk to have me controlling the rope for someone else. I completed some of the easier climbs but Kiwi, the one pictured here, was a bit too much for me at this stage. I fell at the crux and did not have the strength to complete the route. However, I'm sure it will come back after a couple more weeks of practice. It's fantastic to be back on the rock and it feels like I'm applying Lance Armstrong's "livestrong" motto. I think it should be more than "livestrong", "liveintense" seems more appropriate because you need to take your mind off the tumour and live life as intensly as possible in these circumstances.

The fine art of avoiding vomiting

2009-08-03T04:11:00.000-07:00

I have been learning a lot about the art of anti-nausea over the last five days. On Thursday I ran out of the anti-nausea drug zofran and had to switch to Maxolon instead. Up until now I have been lucky enough to not have any vomiting problems. But Friday's visit to the radiation clinic was another story and taugh me a new lesson. While waiting in the waiting room I started to feel extremely unwell and while sitting there I was planning my emergency escape route if I needed a hurl. And sure enough, next thing I know I was sprinting for the front door then the garden. After suffering all weekend I finally got to talk to my oncologist this morning and he suggested I see my GP about getting a prescription for some more Zofran. After a very queasy morning, and a lot of help from Cheryl (she's an angel!) we finally got hold of the Zofran and the change was miraculous! Just one tablet and suddenly the nausea all went away! I don't know what it is about that drug but it sure works better than Maxolon for me...

only 17 days to go to some more good times

2009-08-02T04:03:00.000-07:00

Here is a photo of the pretty pattern I get imprinted on my nose each day after 10 minutes of being squashed by the face mask.

I'm starting to wonder if this blog is really helping anyone? It started out being some positive stories about living with a brain tumour (something you do not normally read on brain tumour blogs), but since the second recurrence I'm afraid the harsh reality of it all has brought me back to earth and here I am reporting on surgery, chemo and radiation instead. However, that said, after completing the thirteenth day of radiation therapy on Friday, it means that there are now only 17 days to go before I get back to some serious living and reporting on something more positive! By then, I hope that the temodal and radiation will have done the job and cleaned up the tumour cells remaining after the surgery. This time I'm hoping for at least five years before another recurrance. There are so many walks to walk and cliffs to climb!

Flinders Peak - first mountain since surgery and the start of 'Third Life'

2009-07-25T23:08:00.000-07:00

Scarlet Honeyeater at the Flinders Peak picnic area

At 679m Flinders Peak is not very big, but it does make a great day walk. Kev McCloskey organised for a group of eight to do Flinders yesterday but unfortunately he came down with a virus during the week and out of consideration for the fact that I have just completed my seventh day of combined radiation and chemo therapy, Kev (and Karen) very kindly opted to stay at home. The remaining six of us met at the foot of the mountain after Gary and Catherine generously picked up Chery and me on the way (I'm still not driving because of the risk of a seizure)

Cath, Alan, Cheryl, Catherine and Gary on the way up
Flinders Peak

It was fantastic to be out in the fresh air again and my legs felt very strong up the steep slopes and rock hopping over the rocky sections, so that was pleasing. Especially as it took three months to get back to normal after the last craniotomy and it has only been a month since surgery this time. There was an in-depth analysis of the correct way to adjust for magnetic variation on the way up (do you add or subtract?). Time passed very quickly with our chatty little group and before we knew it five hours has slipped by and we were back at the cars. Thanks guys for a much needed lift of spirits. An outdoor experience like that is about as close as I come to being spiritual!

Me and Chery on the summit with my home town
of Beaudesert in the distance behind us

Drugs, drugs and more drugs!!!!

2009-07-23T03:34:00.000-07:00

My daily drug intake has steadly increased over the last couple of months to the point where I now take the collection shown in the photo each day. The worst one is the Temodal which must be taken on an empty stomach and you can feel it sitting in there fizzing away while you wait half an hour for it to get into the brain and do its thing.

Today's good news was that a blood test showed that after five doses of combined chemo and radiation therapy, my red cell, white cell and platelet counts are still fine.

Radiation/Chemo Therapy 1 down, 29 to go...

2009-07-16T20:30:00.000-07:00

This is a photo of Cheryl and me outside the Premion radio therapy clinic at the Wesley Medical Centre yesterday when I had my first dose of radiation therapy using X-rays to kill the remaining tumour cells left behind after the surgery. I am holding a bag containing my supply of the chemo-therapy drug Temadol, which is used for brain tumours (although it is usually used for malignant tumours rather than benign tumours like mine). Unlike most drugs, Temadol has the ability to cross the blood-brain barrier and get in there where I need it to do its job. It also has been shown to make tumour cells more sensitive to death by radiation, which is why I will be taking it during the radiation therapy. It was quite an experience having the face mask that I described in a previous post, clamped down hard on my face. It was so tight it was squashing my lips against my teeth. I tried to get a photo of it, but the nurses asked me to get permission from my doctor first. Maybe next week I'll get one.

Ready for Radiation

2009-07-09T04:53:00.000-07:00

Yesterday I visited the Premion Radiation Oncology Clinic at the Wesley hospital to attend a "Planning" session which really turned out to be a setup session. They had to make a mask of my face which will be used to ensure that my head is positioned in exactly the same position each time I get zapped with the X-rays from the radiation machine. The formation of the mask was actually a pleasant experience as they pressed a warm soft mesh onto my face, it was a bit like receiving a facial massage! The image I have palced to the left shows an example of this process. I will be receiving a treatment that is called Conformal Radiation therapy (see http://www.medterms.com/script/main/art.asp?articlekey=13504) using five beams.Yesterday, after the mask had set they performed a CT scan of my brain and this scan will be merged with an MRI scan that was done later in the day (that is because the MRI shows up the tumour better than the CT). So now I am all set for the first dose of radiation scheduled for next Thursday at 10:30 am. Hopefully this therapy, which comprises 30 of these fractional doses, will kill off any tumour cells left behind from the surgery.

First Bushwalk since surgery

2009-07-09T04:23:00.000-07:00

Last weekend Michael and I went out to White Rock at Redbank Plains and did the 7km return walk to White Rock. It was such a relief to get out of the city and do something slightly more energetic again. Unfortunately, the sandstone is far too soft for climbing so we had to limit ourselves to just the walk.

Hitting rock bottom

2009-07-08T03:20:00.000-07:00

The last four weeks have, without a doubt, been the hardest time since I was diagnosed with this tumour way back in 1993. My resilience was first tested on 16 June when I visited Dr Paul Mainwaring at the Mater hospital - Division of Medical Oncology(see earlier post). The scene in the waiting room there was a huge shock for me. There were50-60 people, most of whom were in advanced stages of intense cancer treatment using chemo therapy and were obviously very unwell. I was sitting there thinking:

"wow! this is the new me - Laurie Barram cancer victim. This peer group is a far cry from the gang that climb at Kangaroo Point on Wednesday evenings that I used to belong to only a few weeks ago..."

Then, the very next day I had an appointment with the Radiation Oncologist Dr David Schlect. Well, it was almost a repeat of the day before, with elderly, obviously very ill patients lining up in the waiting room for their daily radiation treatments.

For the first time, I started to get scared, very scared!!!

By the time I got to see Dr Schlect, I was a mess.

He simply said:

"How are you going?"

That was all it took to tip me over an emotional precipice and next thing I know I was crying like Bob Hawke and hugging Cheryl in desperation.

Luckily, Dr Schlect is used to this sort of thing and keeps a good supply of tissues in his office!

Once I could speak again we talked about what to do about my loss of emotional control and he gave me a referral to a psychiatrist friend of his, Dr Eric Delacey at the Toowong private hospital.

So I visited the "shrink"on 29 June and I must say that I was very disappointed to find out that Woody Allen has been conning us all these years because I can report that there was definitely no couch to be seen. Dr Delacey focused on determining which of three possibilities was causing my depression. Was it a) a normal reaction to having a life-threatening illness b) I had developed a depressive illness or c) due to damage to the right frontal lobe of my brain from the surgery. After I had no trouble with some tests for the latter, he decided that it was mainly just a normal reaction. Regardless what was causing it, he felt that a low dose of anti-depression medication would be the best way to deal with the problem and I was prescribed a half-dose (ie 30mg tablets) of a drug called Cymbalta

My emotional state has certainly settled down considerably now.

Laurie needs to sign off for awhile

2009-06-17T04:56:00.000-07:00

While Laurie is continuing to heal physically he has found in recent days that he is still in need of more rest mentally. We are continually being told by Doctors that Laurie will get over this and get back to normal but it may take a month or two so I have banned him from the computer for now. When my old Laurie resurfaces, I am sure he will be more than happy to return and continue telling his story.

Cheryl

NO cure, but there is hope that we can probably slow the bastard down!

2009-06-16T00:21:00.000-07:00

A visit to Assoc Prof Dr Paul Mainwaring at the Mater hospital - Division of medical oncology is always an entertaining experience.He always gets excitedwhen I arrive with some research papers that I have read and I always walk out with some homework to do. That suits me fine, as I enjoy trying to understand exactly what I am dealing with.Dr Paul has recently returned from a trip to the United States and He says that there are a swag of new developments in the use of drugs to control (ie. slow the progression of)low grade gliomas like mine. Tonight's homework is to find out as much as possible about the effectiveness and side effects of the following list of drugs:
optiens
Avastin
Pozapinib
Celecoxib(Ialready have information on this one, as David Walker recommended it:-))
Sunitinib
temadol

Craniotomy#3 - Third time lucky

2009-06-16T00:14:00.000-07:00

For a blow by blow description of my time in St Andrew's hospital recently. see the blog created by Gary at:
http://brainsurgerynotrocketscience.blogspot.com/

2009 - "Houston, we have a problem..."

2009-05-10T05:31:00.000-07:00

It appears that the old oligo is misbehaving! The MRI and PET scans that we scheduled three months ago, after some uncertainty in January, have uncovered two new issues. First, it is clear that the oligo has grown when compared to images from two years ago. Second, it is now touching the Corpus Callosum and if it invades that structure it will become inoperable.

Luckily, indications are that it has not turned malignant.

Updated: 15 May 2009
David Walker at Briz Brain and Spine advises surgery followed by radiation therapy. I saw radiation oncologist David Schlect and he suggests the same course of action. I then consulted Michael Redmond who operated on me in 1993 and again in 2006. He agrees 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 sugery followed by radiation therapy
I should act sooner rather than later

Further, he thinks I should be more aggressive with the surgery this time. That means the surgeon would take as much of the tumour as possible even at the risk of damaging surrounding healthy brain tissue (ie neurons). Unfortunately, that also would increase the risk of post-operative swelling which nearly finished me off after the last operation. So it is a case of the more aggressive the operation, the more risky it becomes, but the better the long-term outcome. This will no doubt be the subject of a meaty conversation with David Walker when I meet with him this Thursday to give him the go ahead for the operation.

It has become a bit of a tug-of-war between me and my oligo and right now it has the upper hand. So I need to go ahead with the surgery and radiation as I think that would be the quickest way for me to be winning again. It is a bit of a gamble because the surgery is so dangerous, but hey, I'm feeling lucky!

Updated: 21 May 2009

We have now booked in for the surgery with Dr David Walker. The operation will be on Friday 29 May 2009 at St Andrew's Hospital. Will post further details when arrangements have been made.

MRI scan May 2009 (Click on image to enlarge)

2009 - A big year for sea kayaking (click images to enlarge)

2009-05-10T04:23:00.000-07:00

Damiano giving instructions before a first paddle in the surf at Byron Bay.

Cheryl and sunset on Marshall Creek, Brunswick Heads.

The Queensland Sea Kayaking Club at Brunswick Heads, New South Wales.

With Murray on Green Island, Moreton Bay.

Gary took this photo when we were paddling at Wellington Point one afternoon.

In March we launched the Guillemot sea kayak. It had taken John and me 13 months to complete and it was very satisfying to finally get it into the water. It is a very responsive craft and a pleasure to paddle.

John and me beside out creation.

Lots of our dear friends turned out for the launch of the Guillemot kayak.

John setting me up for my first paddle.

2009 - Federation Peak (Click on images to enlarge)

2009-05-10T03:59:00.000-07:00

In February I forgot all about the oligo and went off with my good mates Michael, Karl and Ritcho on Michael's expedition to climb Federation Peak, SW Tasmania. It was certainly one of the hardest walks I have done and the ascent of the peak was quite an adventure. Fortunately we all came through unscathed.

2009 - Lord Howe Island (click on images to enlarge)

2009-05-09T05:15:00.000-07:00

We started 2009 with a trip to Lord Howe Island to celebrate Cheryl's birthday. What a place, mountains and coral together, we had a great time walking some of the most scenic bushwalks in Australia and did a bit of snorkelling. Do go if you ever get the chance!

A view across the coral-filled lagoon at Lord Howe Is.

Cheryl and me at the Goat House cave on Lord Howe Is. We highly recommend this walk.

There was a surprise for me later in January when a regular checkup scan reported signs of progression of the tumour. A second opinion suggested no progression, so I got a third opinion from Dr David Walker at Briz Brain and Spine clinic. He organised a PET scan which had a negative result so if there was change it was still probably not malignant. We decided to give it another three months and check again.

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

2009-04-29T00:00:00.000-07:00

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)

2009-04-28T21:48:00.000-07:00

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)

2009-04-28T21:15:00.000-07:00

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

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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)

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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)

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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)

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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

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Climbing "Jesabel" (16) Mt Maroon

A potted history from the medical perspective

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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. 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…”