As new chemotherapy drugs that work in novel ways come into increasingly common clinical use, it is beginning to appear as though some onerous and potentially life-threatening side effects may be occurring more frequently than original trials data might have predicted. Based solely on patient experiences reported on the Colon Club forum (http://coloncancersupport.colonclub.com/), it seems to me that several cases of gastric perforation in patients taking Avastin in as many months disqualifies perforation as a “rare” side effect (which is how it is currently characterized on the label). Likewise with the cutaneous vasculitis reported by two patients on Avastin in just the last 2 weeks– as far as I can tell, that is not even a listed side effect at all. Would these patients have reconsidered including Avastin in their regimen if they knew that these potential side effects were less rare than they had been led to believe? Did their oncologists even mention such side effects at all?
Some patients don’t concern themselves at all with side effects– they want everything available to fight “the beast”. “Damn the torpedoes– full speed ahead” kind of thinking. Others might prefer to weigh their choices, to compare risk versus reward and quality of life versus quantity of life. Each person will decide differently, based on the unique circumstances of their own personal situation.
But shouldn’t we have the choice? John was twice victimized by two different oncologists with two completely different views on chemotherapy, who shared in common a paternalistic “doctor knows best” attitude towards their patients. Our first oncologist basically told John, on the occasion of his first appointment, “The only drug we have to offer you is called 5FU. It is so old that it has been in use for more than 30 years. It doesn’t really work very well. There are a couple of newer drugs (names not even mentioned) that have been approved in the last couple of years, but they’re so toxic that you don’t even want to consider them. If it were me, I wouldn’t do any chemo at all– there’s no real gain, and it just ruins your quality of life.” At the time, we thought that this kind of talk was refreshingly honest. It certainly wasn’t what we expected to hear, but hey, it sure sounded like what John wanted to hear. Or what he thought he wanted to hear…
This chapter in Shedding Light on the Cancer Journey http://www.amazon.com/dp/B004T3331M
looks at the following crucial considerations in a cancer patient’s decision-making process:
1. Risk versus reward analysis: what do I stand to gain and what price will I pay?
2. What constitutes “unacceptable toxicity”?
3. What do those obscure terms your oncologist uses so easily (i.e., “progression-free survival”) really mean in plain language? Sounds good on the surface, but a deeper understanding could have a profound effect on your treatment decisions.
4. Why taking an active role in your treatment is mandatory for the best possible outcome.
All this and much more on the endless decisions and confusions of a cancer patient’s life– what your doctor doesn’t tell you, what could not (until the publication of this book) be learned without going through the experience yourself– is now available in E-book format at Amazon: http://www.amazon.com/dp/B004T3331M
The E-book can be read on any computer, Ipad, Ipod Touch, Blackberry or Android– the reader is completely free and quickly downloadable from Amazon.
All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.