Thursday, February 12, 2009

Clinical Trials

This is a commentary I wrote for Chaya's new site on the issue of clinical trials. It is a bit dry unless you are considering this option yourself as you struggle with your CLL.

But first a critical point. Please support Chaya's site

It is a bright light in the murky world of CLL. She needs your help and your money.

Her whole article is well worth reading. What follows are my comments on why so few enroll when it so important:

Trials are tough because they are full of unknowns in a disease of unknowns. It is often easier and wiser to choose the devil you know, even if he only has a 20% chance or less of getting you to a CR.

Trials don't promise anything, and so they are often left to those who have no promises outside of the miracle discovery, the next Penicillin.

They also appeal of course who blindly follow their oncologists as they look to fill their rosters (and sometimes their pockets and their CVs). Most have their heart in the right place, but their enthusiasm while contagious, is not always justified for the project at hand.

And there are those who are simply doing the same treatment anyway and might as well join a trial to get a bit of a free ride.

Sad when you think that RCTs (randomized clinical trials) are our only hope (I repeat: our only hope) to find a path to a cure for this incurable disease.

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Blogger Barry B. said...

Perhaps I get caught up in the enthusiasm, though I don't think so, but I don't mind clinical trials at all. I've been in two so far, and expect to be in at least one more. I like to be a pioneer, I guess. For one thing, people who are 'behind you' in terms of CLL progression are quite interested in what you say. That doesn't happen often enough these days.

(When I was young and much better looking, I found pretty young women were usually interested in what I had to say. I thought it was because I was so darned interesting. Once past 40, you realized they paid attention BECAUSE you were young (if not attractive). Now, I think I'm just as interesting a fellow as I always was, it's just that few giving a flying hoot about what I have to say.)

Anyway, I was on a phase II trial for high dose methylprednisolone plus high dose rituximab. This was a Dr. Kipps trial in San Diego. It brought my neutrophils down to 0.0 (zero!), and I was in the hospital for a week right after the first treatment. Scary. But the treatment had been used on many people before, so I knew the risks, and, besides, it wasn't fludarabine!

The second trial was an internodal injection of the ISF-35 immune stimulating factor. This was a phase I trial, something I swore I wouldn't do, but it was at a point I needed to do something, and, again, it wasn't fludarabine.

Never have I regretted being in a trial. I responded well both times, though the first trial gave me 11q, and the response to the second trial was brief, only two months, also not unexpected.

February 20, 2009 at 11:09 AM  

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