Sunday, February 12, 2006

Side Effects Include Death

Side effects may include death. They're pretty up front about this at rituxan.com, the pharmaceutical industry site I ended up at, seeking information about rituximab, a drug I may possibly end up taking if in fact my lymphoma has come back.

In the "safety profile" it says "Death related to Rituxan therapy has been rare. In general, most deaths have occurred after the first administration. Other rare causes of death have been kidney failure following rapid killing of tumor cells".

The drug seems to be a standard treatment for what I may have, which is B-cell non-Hodgkin's lymphoma (NHL).

The site says "Rituxan is for people who have relapsed or refractory low-grade or follicular, CD20+, B-cell non-Hodgkin's lymphoma," and that may quite possibly be me.

So how come my oncologist put "highly experimental" in my head?

Maybe treating central nervous system lymphoma with this drug in combination with an Omaya reservoir is "highly experimental".

Anyway, it exists. A possible cure. Sometimes does cure. Sometimes also kills you stone dead.

While stressing that everyone's case is unique, the site tells various stories, including one man's story of lymphoma coming back at him again and again over a period of nine years.

A well-designed site which includes a downloadable information organizer (telephone numbers, medications etc) that some people would doubtlessly benefit from printing out and filling in, and a long list of questions and answers, standard questions that a web site can answer as efficiently as a doctor.

But the big question, kill or cure, how long? That one is answered in a way that says it is unanswerable, since "every patient is different".

Your own case is your own one-off experiment in the arena of life and death, and the statistics of yesterday's games do not necessarily have any relevance whatsoever to yours.


The website, then, is every bit as non-committal as my oncologist.

A specialized B-cell killer, this drug, a selective ninja rather than a chemotherapy bulldozer steaming through in a mode of massacre. Has worked for some people but, of course, "No cancer treatment works for every person."

Nature, operating in a mode of political correctness, gives us our uniqueness, so what I'm really looking for, a sense of what might be considered "normative" in this situation, quite simply isn't there to be found.

In amongst the information for health professionals on a clinical trial, this:

"The overall response (OR) rate was 48% (80/166) with a 6% (10/166) complete response (CR) rate and a 42% (70/166) partial response (PR) rate. The median time to onset of response was 50 days, and the median duration of response (DR) was 11.2 months."

Not being sure of the definition of "complete response", I read or misread this as meaning that your chances of a long-term solution are in the range of six percent.

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