As you see, I was sent a comment a couple of weeks ago by Rachel, and I thought what she said was so relevant to many people with a GBM (the most aggressive form of brain tumour, which I have), and their families, it was worthy of a separate response.
August 13, 2013 at 12:36 PM
I am posting from Melbourne - I read your posts and so enjoy them. My Dad, aged 68, has GBM.
He has just declined Avastin as a final treatment option - he was diagnosed in March 2012. We are now just going to back off anything to do with hospitals and appointments and let him be at peace on his own terms as much as possible.
I think its natural to wonder what if he did just try Avastin, but its his choice, and I respect that. Your insights are so valuable - thank you for sharing them. I wish you and your wife all the very best. x
|Avastin works differently from chemotherapy.|
Don't worry - that's not what the posting's about!
I know because I was in that bracket when I had to make a choice.
The problem: is the cost of the treatment worth it?
It's a decision that in the end must be left to the patient, who should not be pushed into a decision one way or the other by any other person. They should consult whoever they like about it, but no-one else should make the choice for them, nor try to.
Rachel and her family stood back, and let him make it. They would have had their opinions, and they were entitled to express them of course. If he chose to go ahead with the treatment, as long as he could finance that decision and not impose on them, that's where their rights ended.
Rachel didn't say why her Dad opted not to try Avastin, but his choice was his business and not mine.* He may not have told his family why. His choice again.
I agree with Rachel that it's natural to wonder whether Avastin was worth a go for him, but the choice for many depends on a number of other factors. I already mentioned cost and age, but let's try to list some:
* other medical conditions
* concern about side-effects
* belief that primary life goals have been accomplished
* religious beliefs and/or personal philosophy
My choice to try it was based on these considerations:
* I could afford to experiment with one dose of Avastin
* Tracey and I were in full agreement about trying one dose and observing its effects
* I was fit and healthy when the tumour was diagnosed
* I was prepared to risk side-effects
* In terms of quality of life, I was at a stage when I made the choice where I had little to lose
* there were no indications of any other problems likely to develop with or without Avastin
* I had tried every conventional treatment and had no faith in others, especially those where heavy costs were involved with no reasonable evidence of success
* I was excluded from trials by conditions set by trial researchers – usually age
* I was in any case in no condition to travel for trial treatment
If I had had a negative reaction to Avastin, or there was no evidence that the $6,000 shot had done any good, that would have settled the question once and for all. Many with GBMs get no benefit from the drug. It would have been worth $6,000 just to know that.
Ironically, the risk in my decision was that the first Avastin infusion might have the positive effect we'd hoped, which seems crazy, I admit. But when you're in this position, it's not quite so odd. I'll return to that.
I think the worst result would have been a small or apparent gain that did little to improve my quality of life but gave some hope, probably unjustified. Would another dose improve things? Or would it just be a waste of money we couldn't afford to spend? Not one person in the world could have predicted.
Fortunately, that didn't happen.
What happened was that the first dose of Avastin was a resounding success. From a medical point of view, it was obvious that we should continue with the treatment. No doubt about it.
We didn't know how much extra time it would give me. It was possible that its benefit would end within a couple of months, or it could have gone on for longer. There was no way that we could know. Unless something like a heart attack or stroke happened to end the program almost immediately, it would've been mad not to continue. After all, an Avastin infusion every three weeks does not have the debilitating effects of most forms of chemotherapy.
The only thing that stood in our way was the cost, and that was my dilemma. We were looking at an outlay of $25,000 at least, within three months. It was an amount I could have scraped up from somewhere, but at a cost that would have put my family into significant hardship. Christian was still at high school, and Tracey would have been left with not enough to live on after I was gone, faced by the usual – and rising – costs of living.
I don't know how much you know about the rest of this part of the story, but I will just say that family and friends got together to make donations and have a benefit night which raised a substantial part of the $25,000 needed. We knew we'd be able to stretch finances to close the gap at the end. We knew that we were not financing a possible cure but a possible extension of reasonable quality life.
A large number of brain tumour sufferers are simply not in a position to do that, or to be as fortunate as I was in having generous groups and people who were willing and able to help. Others prefer not to take the risk that a significant amount of money will be wasted for very little if any gain.
This brings me back to Rachel's Dad's decision not to have the treatment at all. He made his choice and I'd most likely back him to the hilt.
There's no doubt that I've been very fortunate with Avastin. I don't know of anyone my age who has gone on for anything like the length of time I have.
In the three years I've been on the drug, I've had relatively little discomfort from the Avastin itself. Without the protein excretion tests on my kidneys every three weeks, I doubt if I'd known there was any attack going on to them at all. Over this time, using the drug has caused plenty of indirectly related and serious problems, though. It's not been all beer and skittles. Far from it.
So now we continue to play the delicate balancing act we have been engaged in ever since we knew that Avastin's positive effect has diminished, and its negative ones have come to the fore.
Thanks for giving me the impetus to write this, Rachel.
*Incidentally, when doctors get what they believe to be untreatable cancers, they often adopt the same decision as Rachel's father, so he's in good company.