What Should You Consider Before Entering a Clinical Trial?

MD Anderson Cancer Center
Date: October 2012

It's important to ask about what costs you would be responsible for before you enter a clinical trial.  The bottom line is that you will be responsible for costs not covered by your health insurance or the sponsor of the trial, frequently a pharmaceutical company.  Other things to consider are what type of time commitment will it be?  What are the transportation, housing, and parking issues?  What social services are available?

Patient 1
On this protocol that I'm on now, I had to commit to come to MD Anderson for all the blood work.  Everything concerning the trial I had to commit to come here.  I drive 660 miles one way.  So it's 1,330 round trip.  So if you're going to do a clinical trial, and it happens to be one to where they want all the work done at the clinic here rather than doing some in hometown and sending them fax back, as I did in my first clinical trial, you have to make a decision is it worth it for the travel, the expense, and the time it takes.  In 2005, we made I think it was 31 trips to Houston from Alabama.  So you have to commit that this is what you want to do.  A lot of things come into play.  So you just have to weigh out your own situation to see if that's really what you want to do.

When Robert Holman was undergoing treatment, he and his wife were able to find a hotel room with a kitchen, and that became home away from home for seven weeks.

Patient 2
Robert Holman: Radiation five days a week.  It would have been too hard to try to drive back and forth up here.  Five days a week, and, you know, and sometimes it was early in the morning, and sometimes it was, like, late in the evening.
The decision to participate in a clinical trial takes much consideration and includes family members who many times share in the decision making and the care giving.

Patient 1
My family did have a part in helping me make my decision.  They were all on my side.  They wanted me to do whatever I felt like I wanted to do.  They all wanted the best thing for their daddy, and, of course, my wife wanted the best thing for me, and she was willing to do anything, go anywhere that we needed to go, to do whatever was best for us. 

Many patients and family members also find themselves wanting to rely heavily on their doctor's advice.  Janice Duplesus was given the option of a clinical trial but had a difficult time deciding whether to participate.

Patient 3
Janice Duplesus:  It was a hard decision.  It was one I struggled with.  I went and saw those guys up there three times, my husband and I, and came home, and I mean, read and read and read, and I still didn't understand.  So I went back the second time, and we talked again.  I said, well, let me ask you this here and please be honest.  If it was you or it was your wife, what would you do?  And he said, well, I really can't answer that.  I said, well, really, I really want to know.  I mean, it's not going to sway me anyway, but I want to know how you feel.  And he still wouldn't answer me, and he left that up to me.  So I guess he didn't want to biased or whatever.  And so I left his office feeling kind of down, and he said, "Well, go home and think about it again."  I said I'm going to come back home, read again, and just think over it again, and I went and saw him again in one week, and we sat down and talked again, and that's when I made my decision.

Janice finally decided against entering the clinical trial, and she's comfortable with the decision she made.  Remember, you have the right to receive the best care available, whatever decision you make, and your decision will not affect your relationship with your doctor.

For many people, participating in a clinical trial is not only a chance to help themselves, but also an opportunity to contribute to the greater good.

Patient 4
I think it's very important.  You know, while we may not where we are today, if people ten years ago weren't getting into these same type situations, granted, they cannot help maybe everybody, but they can help so many more in the future.

Patient 1
I said if it didn't help me, then maybe it would help somebody else by participating in these studies. 

Patient 5
I was delighted, first of all, for what it did for me, but, secondly, that it gave hope to so many others that were coming after me that if this happens for one person, maybe it could happen for me, too.