Skip to Navigation Skip to Search Skip to Content
Search All Centers

CLL Clinical Trials: The Value in Going the Extra Mile

Read Transcript
View next

Published on February 28, 2020

Key Takeaways

  • The right CLL treatment for you might not be the closest geographically. If you are able to travel, expand your search to expand your opportunities.
  • Clinical trials offer patients the chance to receive cutting-edge therapies. Use ClinicalTrials.Gov or Patient Power’s Clinical Trial Finder to research your options.
  • If you qualify for an FDA-approved clinical trial, you may be eligible to receive financial assistance for travel-related expenses.

“Once I determined what treatment I wanted, I did what I had to do,” says chronic lymphocytic leukemia (CLL) patient and advocate Tom Gill. When Tom was initially diagnosed with CLL at age 44, he had no intention of participating in a clinical trial, let alone traveling more than a thousand miles each way for one.

Watch now as Tom explains how consulting a specialist for help and doing his own extensive research led to a change in perspective and the decision to commute out-of-state for a clinical trial.

Featuring

Transcript | CLL Clinical Trials: The Value in Going the Extra Mile

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:       

Hello, Andrew Schorr here for Patient Power down near San Diego and across the country. Tom Gill joins us, also with CLL. He’s in Boca Raton, Florida, in his insurance office there. Tom, you were diagnosed at age 44 with CLL, pretty terrifying. I was 45 when I was diagnosed, little kids just like you have teenagers. And you went to your local doctor, and you were not really satisfied with what you were told, right?

Tom Gill:                  

Correct. I was at a hematologist, just because my white blood cells had been slightly elevated for a few years, and they jumped up and up where the doctor said, “Go get it checked out,” and I was diagnosed with CLL. And he then went on to say he doesn’t really consider it cancer, because it’s not that bad and started to review online the next steps that were going to be taken, which, looking back now, were very dated information, stuff that you would never do off the bat after the research I’ve done.

So, I immediately went to search out a specialist, and did not do anything until I had talked to a specialist in specifically CLL. And that’s when I learned about the changing landscape of CLL because of all the new drugs that were coming out.

Andrew Schorr:       

So, you went the extra mile. We did a Patient Power survey of people, and we found that most cases, even with the changing landscape of CLL, as it’s happening in some other cancers as well, the initial doctor does not mention clinical trials.

Tom Gill:                  

Correct. 

Andrew Schorr:       

So, somewhere along the line, you heard about clinical trials. You weren’t comfortable with that initially, were you? 

Tom Gill:                  

Right. Like most people, I kind of thought of clinical trials as testing drugs that were throwing stuff against a wall to see what sticks, just like a lab rat: very untested, very brand-new, who knows what it’s going to do to you, which is certainly not the reality.

Andrew Schorr:       

Right. So, what turned you around? You continued to do research. What turned you around? 

Tom Gill:                  

Well, the specialists were talking about the changing environment and how FCR was the standard protocol and had been for several decades, but there was a whole bunch of new medicine coming out. They couldn’t really explain it to me because it was too detailed, but I took the time myself to research what was going on and to look up what these drugs do and that they had, in fact, been working—they just needed to go through the formal process to get approval—and how much do you take and how long do you take it.

Andrew Schorr:       

Right, and to work together. So, that became a big commitment. So, you sought out; you went through clinicaltrials.gov—that’s kind of tedious for a lot of people. You looked at a lot of technical information and found that there was a trial that sounded good to you far away in Columbus, Ohio from Boca Raton, Florida. And you enrolled in that trial as an untreated patient, and you were basically commuting. So, what would you say to people about, first of all, the idea of considering a trial, and if you can, even if it’s at a distance, if you feel good enough about it, to make that commitment?

Tom Gill:                  

I would say, first of all, the information about finding a specialist in your type of cancer. In my case, that’s truly what worked out to happen is that I needed to see a specialist in CLL. When you are going through this process, you have to think what are the chances that a specialist in what I have is going to be right in my backyard? The chances are probably low. I talked to a specialist in Florida; I talked to a specialist in Texas; I talked to a specialist in San Diego; and I talked to specialists in Ohio and New York. After doing the research, talking to the specialists, I sort of came up with the treatment of at least one drug—if not a few—that I wanted to target getting access to.

Once that was the case, then I started the research on the trials to see where this drug was being given. All these drugs were on a trial basis, so that’s why I was researching trials so much and had to look at what was available at the time that I needed treatment and to try to get into one.

Andrew Schorr:       

And then you were on flights pretty often over the course of over a year going back and forth. So, Tom, do you feel all that was worth it? 

Tom Gill:                  

I do. In my particular case with CLL going through the big change and the new drugs that were available, no regrets about the travel costs, anything like that, because I did get the drugs that I wanted, I did get the results I wanted, side effects were not that bad. Now, again, very lucky for me. Obviously, there are side effects, there are travel costs, but once I determined what treatment I wanted, I did what I had to do.

Andrew Schorr:       

And how are you feeling today?

Tom Gill:                  

Feeling great. Got a complete response, been off treatment for over two years now, and everything’s going great. 

Andrew Schorr:       

Okay. Well, Tom, we wish you well. I will just mention this on the side: there are some new policies by the FDA that have made it easier for sponsors of trials to provide logistical support for people traveling, parking, hotels. And so, as people watch this interview and maybe you’re considering being in a trial but say, “Oh, it’s too far,” or “How do I take the time to do it,” or “Can somebody come with me?” There are both foundations and pharmaceutical sponsors now that are increasingly providing support, so you’ve got to ask. Do your research like Tom did. Tom, all the best to you. Thank you for now being a proponent for trials. I really believe in it, and I’m so glad you’re doing well. All the best to you.

Tom Gill:                  

All right, thank you.

Andrew Schorr:       

All right. Tom Gill in Boca Raton and Andrew Schorr in California, both of us reminding you that knowledge, and maybe clinical trials, can be the best medicine for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Recommended for You

View next