I seem to be in a holding pattern at the moment.
I've had confirmation from Dr D'Souza that we will start mobilisation of my stem cells in early January. This means I'll probably be re-harvested about two weeks after that. There was no mention of salvage chemo in his email but he did say that he would discuss the finer details at next Wednesday's appointment.
I finally managed to extract the documentation out of the Doctors at the Leonardis Klinik in Germany. They seemed to use every excuse they could find to avoid sending it. Considering they originally told me it was all ready to go when I left Germany two months ago you have to wonder what they are up to.
As soon as the cryopreservation people at Wellington Hospital let me know when they are ready to receive the stem cells, I shall organise with World Couriers to have them shipped back. I have a suspicion that the cells will turn out to be not viable once tested. We shall see...
Health-wise I'm in good shape. I have been walking with Sarah most evenings and on others I either run or walk on the treadmill. Every morning I try and do as many push-ups as I can and I've gone from struggling to do just one push-up two months ago to now being able to complete twenty most mornings.
I no longer suffer from night sweats or back aches and the only obvious sign of my disease is the constant cough. I remember back in December 2006 when my stem cells were being mobilised for the first time, I had exactly the same cough. My breathing was a lot worse back at that point and my health was worse too. I think it's a real blessing to be feeling this good two years down the track. If I had not undergone any of the treatments I've had, despite the fact that they have all ultimately failed, I'm fairly sure I would be dead by now. So at least they have kept the disease relatively at bay, if not actually made me better off than I was back then.
I'll post again on Wednesday after seeing the Doctor.
Friday, December 5, 2008
Sunday, November 30, 2008
Shelly Bay Sealed Sprint.
Wow!! What a day!
In my last post I spoke about my goal of breaking the record for the annual Shelly Bay sealed sprint. Joe McAndrew set it back in 1996 in his Pro_drive Subaru Impreza at a time when he was the NZ rally champion.
Today I broke his record on all three of my timed runs, culminating in a 1:11.92 final run. Exactly the time I said I'd like to achieve in my last blog post! I'm absolutely over the moon with the result.
Over the last two weeks I've made several changes to my car, mostly around the suspension. When I first went out this morning for my practice run the car was very skittish and was jumping around at speed (180kph) on bumps. I almost felt like taking the car back to the workshop and un-doing all the changes. Luckily I didn't. Deciding instead to try lowering the tyre pressures and softening the rear shocks.
The changes worked and the car has never felt so positive when cornering. Where previously the car would 'push' towards the outside of a corner at speed, it now corners like a train on rails.
Only the tyres are dictating my position on the road and they seem to slip equally from both front and rear, making the car very predictable and easier to drive. Better tyres are now on my wish list.
The car just got a new set of race tyres but they don't seem to work as well some of the other brands I've seen. Oh well they can't be too bad if I'm breaking records!
I took a passenger on my last two runs, Sarah was first out and I think she got a reminder of why she hasn't been in the 'silly seat' for over a year. She seemed to be most terrified as I approached the Light-House hairpin turn at 180kph and didn't appear to be in any hurry to stop. The huge Brembo brakes fitted to the Evo are capable of stopping the car in an insanely short distance. Next out was family friend Lara, who got the privilege of being along for the record setting run. She can now claim to have been driven over the road between Scorching and Shelly Bays faster than than any person on the planet.
I've posted some new video footage on You-tube. It can be accessed via the video-bar on the right side of this page.
Meanwhile I'm going to have another beer and celebrate!
..Ron
In my last post I spoke about my goal of breaking the record for the annual Shelly Bay sealed sprint. Joe McAndrew set it back in 1996 in his Pro_drive Subaru Impreza at a time when he was the NZ rally champion.
Today I broke his record on all three of my timed runs, culminating in a 1:11.92 final run. Exactly the time I said I'd like to achieve in my last blog post! I'm absolutely over the moon with the result.
Over the last two weeks I've made several changes to my car, mostly around the suspension. When I first went out this morning for my practice run the car was very skittish and was jumping around at speed (180kph) on bumps. I almost felt like taking the car back to the workshop and un-doing all the changes. Luckily I didn't. Deciding instead to try lowering the tyre pressures and softening the rear shocks.
The changes worked and the car has never felt so positive when cornering. Where previously the car would 'push' towards the outside of a corner at speed, it now corners like a train on rails.
Only the tyres are dictating my position on the road and they seem to slip equally from both front and rear, making the car very predictable and easier to drive. Better tyres are now on my wish list.
The car just got a new set of race tyres but they don't seem to work as well some of the other brands I've seen. Oh well they can't be too bad if I'm breaking records!
I took a passenger on my last two runs, Sarah was first out and I think she got a reminder of why she hasn't been in the 'silly seat' for over a year. She seemed to be most terrified as I approached the Light-House hairpin turn at 180kph and didn't appear to be in any hurry to stop. The huge Brembo brakes fitted to the Evo are capable of stopping the car in an insanely short distance. Next out was family friend Lara, who got the privilege of being along for the record setting run. She can now claim to have been driven over the road between Scorching and Shelly Bays faster than than any person on the planet.
I've posted some new video footage on You-tube. It can be accessed via the video-bar on the right side of this page.
Meanwhile I'm going to have another beer and celebrate!
..Ron
Wednesday, November 26, 2008
Tests and another meeting with the doctor
Monday was a full-on day. It started with a 9am appointment at the Nuclear Medicine dept at Wellington Hospital. The first test was the kidney function test. This involves having a radioactive isotope injected into a line in my right arm and then having a series of scans performed.
The isotope is processed by my kidneys in the normal way and a series of blood samples are taken every hour for five hours. The samples are then analysed to make sure that the isotope levels in my blood are dropping. If my kidneys are functioning correctly the levels will decay at a predictable rate.
Next up was the Gated Heart Study. This also involved a radioactive isotope that was injected into my arm, this time my left one. I also had an injection containing Tin before hand. The isotope binds to the tin and then that in turns binds to the red cells in my blood. (Well at least that's my understanding of the process).
I'm then put on a scanning bed, a lot like a CT scanner, and pictures of my heart are taken over a period of around thirty five minutes. From these pictures it is then possible to calculate the hearts efficiency. The amount of blood drawn in against how much is pumped out. Any damage to my heart valves would become apparent, possibly ruling out further chemotherapy. I'm told my heart is still in good shape.
The next test was Lung Function. This involves sitting inside a small sealed glass cabinet and breathing into a tube. Well.. kind of.. There are various tests that you are asked to perform. Breathing all the way in until you think your lungs will burst and then pushing it out until you almost feel like your chest will implode is one of them. Another involves panting into the tube and then pushing against a restriction that suddenly occurs. A computer graphs everything as it happens and then compares it against my previous figures from when we did the 'baseline' tests back in 2005.
No further lung damage has occurred in the last year. I lost about 15% efficiency after my first hit of chemo but none since.
My lung capacity is down slightly on last time but that's to be expected from the radiation damage to my bronchial tubes. I think if I'd done the test a month ago when I could hardly breath the results would have been a lot worse. So I kind of passed the lung test too. They aren't what they used to be, but with exercise I can increase the capacity, however the efficiency may never return to what it was.
This morning I had another meeting with Dr D'Souza. I was late due to traffic and he had to be called back from a meeting. He's been seeing me outside of his usual weekly clinics. It's good to know he's very keen to keep the ball rolling on this. In contrast to previous experience I've had within the public hospital system.
There's still no clear plan yet but he has confirmed that I will be having high dose chemo with stem cell support. The timing is unknown and is based around how quickly I can get my stem cells back from Germany. I've had a devil of a time getting any sort of response out of them. Finally yesterday morning they emailed me and said that they would complete the required paperwork and forward it to me and Wgtn hospital in the next day or so.
The last time I saw Dr D'Souza I suggested that having a couple of cycles of salvage chemo would be something I'd very much agree to.
I thought that it would help reduce the involvement of the cancer until the high dose could be started and also give us an opportunity to do another stem cell harvest off the back of the last chemo cycle. This is based on the phenomena whereby there is a rebound effect on the stem cells after chemo and a greater harvest of cells can be gathered than would be the case without chemo. Also reducing the cancer load means we have less work for the high dose to do and can reduce the burden on my system at a time when I would have a severely compromised immune system.
Today Dr D'Souza suggested that another round of salvage chemo was an option and that he could harvest off the back of the last cycle. I wonder if he realises this is exactly what I talked about at our last meeting. Fingers crossed we go down that path.
The other option is straight into high dose chemo and the stem cell transplant at the first opportunity. Personally I don't think this is the best option. He has indicated that there may be an opening for treatment this side of Christmas. I'll be subtly pushing for the salvage option when we next meet.
I'm racing this weekend at Shelly Bay. I expect that it will be the last event I enter for some time as there is only one event early next year, which I'll probably miss due to treatment and after that there's one event in April then nothing until August.
I've made some tweaks to my car, Launch control and minor suspension improvement in an attempt to do better than the 1:13's of the previous two years I've entered the annual Shelly Bay sprint.
I'd like to do an 1:11 second run, smashing the record of 1:12.85 set by Joe McAndrew in 1996... we shall see :)
The isotope is processed by my kidneys in the normal way and a series of blood samples are taken every hour for five hours. The samples are then analysed to make sure that the isotope levels in my blood are dropping. If my kidneys are functioning correctly the levels will decay at a predictable rate.
Next up was the Gated Heart Study. This also involved a radioactive isotope that was injected into my arm, this time my left one. I also had an injection containing Tin before hand. The isotope binds to the tin and then that in turns binds to the red cells in my blood. (Well at least that's my understanding of the process).
I'm then put on a scanning bed, a lot like a CT scanner, and pictures of my heart are taken over a period of around thirty five minutes. From these pictures it is then possible to calculate the hearts efficiency. The amount of blood drawn in against how much is pumped out. Any damage to my heart valves would become apparent, possibly ruling out further chemotherapy. I'm told my heart is still in good shape.
The next test was Lung Function. This involves sitting inside a small sealed glass cabinet and breathing into a tube. Well.. kind of.. There are various tests that you are asked to perform. Breathing all the way in until you think your lungs will burst and then pushing it out until you almost feel like your chest will implode is one of them. Another involves panting into the tube and then pushing against a restriction that suddenly occurs. A computer graphs everything as it happens and then compares it against my previous figures from when we did the 'baseline' tests back in 2005.
No further lung damage has occurred in the last year. I lost about 15% efficiency after my first hit of chemo but none since.
My lung capacity is down slightly on last time but that's to be expected from the radiation damage to my bronchial tubes. I think if I'd done the test a month ago when I could hardly breath the results would have been a lot worse. So I kind of passed the lung test too. They aren't what they used to be, but with exercise I can increase the capacity, however the efficiency may never return to what it was.
This morning I had another meeting with Dr D'Souza. I was late due to traffic and he had to be called back from a meeting. He's been seeing me outside of his usual weekly clinics. It's good to know he's very keen to keep the ball rolling on this. In contrast to previous experience I've had within the public hospital system.
There's still no clear plan yet but he has confirmed that I will be having high dose chemo with stem cell support. The timing is unknown and is based around how quickly I can get my stem cells back from Germany. I've had a devil of a time getting any sort of response out of them. Finally yesterday morning they emailed me and said that they would complete the required paperwork and forward it to me and Wgtn hospital in the next day or so.
The last time I saw Dr D'Souza I suggested that having a couple of cycles of salvage chemo would be something I'd very much agree to.
I thought that it would help reduce the involvement of the cancer until the high dose could be started and also give us an opportunity to do another stem cell harvest off the back of the last chemo cycle. This is based on the phenomena whereby there is a rebound effect on the stem cells after chemo and a greater harvest of cells can be gathered than would be the case without chemo. Also reducing the cancer load means we have less work for the high dose to do and can reduce the burden on my system at a time when I would have a severely compromised immune system.
Today Dr D'Souza suggested that another round of salvage chemo was an option and that he could harvest off the back of the last cycle. I wonder if he realises this is exactly what I talked about at our last meeting. Fingers crossed we go down that path.
The other option is straight into high dose chemo and the stem cell transplant at the first opportunity. Personally I don't think this is the best option. He has indicated that there may be an opening for treatment this side of Christmas. I'll be subtly pushing for the salvage option when we next meet.
I'm racing this weekend at Shelly Bay. I expect that it will be the last event I enter for some time as there is only one event early next year, which I'll probably miss due to treatment and after that there's one event in April then nothing until August.
I've made some tweaks to my car, Launch control and minor suspension improvement in an attempt to do better than the 1:13's of the previous two years I've entered the annual Shelly Bay sprint.
I'd like to do an 1:11 second run, smashing the record of 1:12.85 set by Joe McAndrew in 1996... we shall see :)
Wednesday, November 19, 2008
Motorsport News...
I got this little piece of motorsport news in my email on the weekend..
***Click here*** (Read the "News" paragraph)
Not a bad result! Especially when you consider two of the events were entered when I was under-going treatment. At the Mount Victoria Hillclimb in April I had just completed radiation treatment, Had lost 15kg in weight and barely enough strength to drive the car.
***Click here*** (Read the "News" paragraph)
Not a bad result! Especially when you consider two of the events were entered when I was under-going treatment. At the Mount Victoria Hillclimb in April I had just completed radiation treatment, Had lost 15kg in weight and barely enough strength to drive the car.
Tuesday, November 18, 2008
Fitness level
Sarah and I went for a two hour bush walk on Sunday afternoon. We hiked up to the Korokoro dam from Cornish st in Petone. At no point did I feel tired or breathless.
I commented to Sarah that I was feeling the best I've felt in years. No aches or pains, no discomfort at all. When I think back to how sick I was when I first went to my GP four years ago complaining of joint pain, fatigue and the feeling I'd been hit by a bus when I awoke every morning.
It's incredible that with my Hodgkins spread so far from the days when it was just a lump on my neck, that I'm feeling in such good shape!
Last night I was so fired up that I jumped on the treadmill and ran for 3km's.
It was my breathing that gave out first, leaving me gasping for air but physically feeling like I could have gone a lot further. I'm hoping my lungs will improve the more I exercise.
As I was typing this I received a call on my mobile. It was a guy from the Nuclear medicine dept at Wgtn hospital. He asked that I come in on Monday for kidney function and gated heart study tests. Apparently it involves me being fitted with two IV lines, being injected with radioactive isotopes and about six hours of my time. Sounds like a fun day!
I commented to Sarah that I was feeling the best I've felt in years. No aches or pains, no discomfort at all. When I think back to how sick I was when I first went to my GP four years ago complaining of joint pain, fatigue and the feeling I'd been hit by a bus when I awoke every morning.
It's incredible that with my Hodgkins spread so far from the days when it was just a lump on my neck, that I'm feeling in such good shape!
Last night I was so fired up that I jumped on the treadmill and ran for 3km's.
It was my breathing that gave out first, leaving me gasping for air but physically feeling like I could have gone a lot further. I'm hoping my lungs will improve the more I exercise.
As I was typing this I received a call on my mobile. It was a guy from the Nuclear medicine dept at Wgtn hospital. He asked that I come in on Monday for kidney function and gated heart study tests. Apparently it involves me being fitted with two IV lines, being injected with radioactive isotopes and about six hours of my time. Sounds like a fun day!
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