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Wednesday, November 3, 2010

Some encouraging news - thanks, Avastin

...and thanks to those who made it possible!

Tracey and I have just returned from an MRI scan in Tamworth. We have had a look at the scans and we feel happy with what we are seeing. Let us share a comparison with you.

Here is a scan that was taken just before the first dose of Avastin, when things were getting very bad in terms of seizures and serious loss of mobility.

View looking down on skull, eyes at the bottom of the picture [August 2010]

What you see in the white area, [the black hole in the middle looking like an egg yolk] is a sac of dead tissue, probably the effect of blasting the tumour with radiotherapy. This isn't bad - it's what should happen. The doughnut shaped grey ring round and close to the black necrotic sac is the tumour [inside the white area], which had spread quite a bit in spite of chemotherapy and the radiotherapy in Melbourne.

The really white area spreading away from the tumour is inflammation, which creates the same problem as if it were tumour, especially in terms of brain pressure and trigger for seizures. Please understand that this image is only one slice of the brain and does not show the vertical extent of the inflammation.

Now, look at this image, taken today.

The size of the necrotic sac remains the same, which we expected as there's no way current treatment will alter that. But the tumour itself and the inflammation are very much reduced. This certainly explains the pause in seizure activity practically from the day of the first dose of Avastin to the present.

Again, this is not a cure and is not going to make the tumour go away. We also realise that the current efficacy of the Avastin will not last indefinitely. However, it is doing what we had hoped it would - giving me time that I would otherwise not have had, and making a significant improvement to our day-to-day lives. 

I will, of course, do all in my power to boost its effectiveness with natural anti-angiogenesis foods, and while there is no seizure activity, do as much rewiring as possible of other parts of my brain through physiotherapy to restore movement and co-ordination in my right hand, arm and leg.

Such results can only encourage us to fight on with everything we have!


  1. This is wonderful, wonderful news. There'll be a lot of smiling faces out there when they've read this.


  2. Does that mean more red wine!!! Yay!! The difference in the two scans is amazing. I'm so over the moon. No doubt you will still be here when you finish the 4th avastin treatment, and then it's clear sailing for as long as the goddess wills.

    I'm so pleased, Denis. We're going to Gunnedah tomorrow, so perhaps after we return, we can start planning that day trip out here. How's the clot doing? I know that's stopping you from getting out of town.

  3. Realistically, we know that it will never be clear sailing. The scan is showing us what must have happened when we started on the Avastin two months ago. We can tell when the changes occurred from the abrupt lack of seizures and improvement in mobility. Thankfully the Avastin seems to be maintaining those improvements.

    Nothing has suddenly changed in this past week, except perhaps the tapering off of good Avastin effects that Denis feels has happened towards the end of each of the two months he has been on it.

    We have no doubt that right now this drug is giving him life and we are well aware that when he stops taking it things will go downhill relatively rapidly. We will be very glad to get the next dose into him this coming Tuesday.

    Hoping like crazy that Roche really will pick up the tab for his ongoing treatment with the Avastin each month after we pay for the fourth dose because I want him here as long as possible!

  4. I was totally thrilled to see the scan, even though I sound like a kill-joy! Den and I drew straws as to who would write the above post :-)

  5. Yes, Tracey's is a posting that comes with both of us living with the reality of this disease for 10 months now. For any criticism of the bedside manner of the doctor who estimated lifespan for this condition right at the start, he would have been startlingly accurate had it not been for Avastin. So, yes, we are happy that the MRI verified what we expected to see, though the result was even better than we dared hope. But we have spent ten months getting on top of circumstances only to be knocked down when we least expected it, often by something out of left field. The damage done to the motor centres in the brain for right side coordination is permanent, and will only be improved by 'rewiring'. The physical damage done to the muscles, etc of the right side can be repaired, but only with remedial physiotherapy, which as I have discovered is a slow and often painful process. I have to learn to use the arm and leg again. The fingers in my right hand I doubt will ever be useful enough again to do something like grip an object securely or type. Side effects of Avastin continue to be a problem, with blood clotting on one end of the spectrum, and unusual bleeding [e.g., minor nosebleeds] on the other. I still have balance issues, mainly because I forget that my right leg doesn't work properly, and have narrowly avoided falling over several times. If I struck my head on something on the way down, the consequences could be severe. The necrotic sac inside the tumour could burst, and not just in an accident - the walls may have a limited strength an duration. The Avastin may lose effectiveness in a comparatively short time. I don't think the '4' figure for paid doses is plucked out of the sky.
    There are other possible events which could occur spontaneously which I won't go into here for fear of looking too much like a miseryguts or ungrateful for the gains made by the treatment.
    So we are very pleased with the results of the MRI but have learned caution - serious caution. Our euphoria is tempered. We look forward to getting out and about more if the current trend continues, and there's no reason to think it won't. It's just that the elephant is still in the room and we have to watch him like a hawk! :)

  6. More than 11 months actually. Time sure flies when you're having fun! :)


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