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Are Personalized Approaches Re-writing History for Lung Cancer?

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Published on May 5, 2015

When thinking of cancer, what is the first thing that comes to mind when thinking of treatment? Patients are not likely to say they are going to request a clinical trial. They might not even suggest this form of treatment because of its experimental nature. When cancer becomes the diagnosis, time is of the essence. The goal is to stop the growth of cancer cells and to stop it from spreading. Today, clinical trials have been a saving grace for many.  Watch and learn as Dr. Antonia and Dr. Benchina discuss why finding a therapy that works best for the individual body and system can take time, and is very important. 



Moffitt Cancer Center LUNGevity Foundation

Transcript | Are Personalized Approaches Re-writing History for Lung Cancer?

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:

I want to mention we’re hoping to rewrite the history books of lung cancer. But lung cancer is really tough, really tough. And you heard us refer about personalized approaches.

And many of you have gone through it.  You’ve gone through really tough treatments. Wouldn’t it be great if there’s a therapy like she received that would be right for your lung cancer and would be right for you? You would get that result. Not everybody does.  That’s why there’s a trial. So, Scott, I don’t want to throw cold water on it, but I want a reality check here on where we are now in trying to figure out whether a new class of medicine can work for people.

And we’ll go on with Tony who actually changed medicines because of some reasons, too.      

Dr. Antonia:

Right. As David mentioned, we’re extremely enthusiastic about this modality. And that comes through the way we’re talking. But the perspective here is that part of this enthusiasm is that we just scratched the surface.  There’s so much possibility for us in terms of developing new drugs that are going to help many, many more people in the future. Right now, with these drugs, we’re also extremely excited about them.

But the reality check is that not everybody benefits. Not everybody gets shrinkage of their cancer. About half of people derive some benefit.  It stops the growth of the cancer. That’s good.  Stopping the growth of a cancer is a good thing or shrinking it. And sometimes, shrinking it considerably in not a rare number of people.  So, again, as you were alluding to, not everybody benefits from this.  We’re very enthusiastic about it because of the prospects of the future.

And we’re very enthusiastic about these particular drugs, not only because is it dramatically increasing the amount of time that people can live who do respond to this. The big, big thing here is that some of the people who get good responses to these stay in response type of remission now for years.

And that’s something that we don’t think about, and it happens very often with chemotherapy or even molecularly targeted agents where nearly everybody develops resistance and has progression someday.                 

Andrew Schorr:

So, Tony, you were in the trial taking the drug that she received.                

Tony Benchina:

Yes, that’s correct.

Andrew Schorr:

And you had side effects?                

Tony Benchina:

Yes.  My experience was a little bit different. I was diagnosed initially in Birmingham, Alabama in September 2012 with stage IV non-small cell adenocarcinoma.

And my bronchoscopy specimens were sent off for EGFR and ALK testing. And thankfully, it came back positive for ALK.  But the test results were going to take a few weeks to be reported. So my oncologist in Birmingham recommended that we start on chemotherapy, which we did.  And I was on three different drugs, which have been shown on the screen. So I was getting three drugs for chemo.

I had my initial therapy in Birmingham, and then we moved to Tampa the following month. And I’d heard of Moffitt Cancer Center previously, because I have a daughter living in Tampa. And when I would visit her, I would see these signs for Moffitt.  So I asked my oncologist if he could find someone here at Moffitt. And fortunately, he found Dr. Antonia who saw me very promptly within two weeks of my moving here and obtained all of my records. So we met. And Dr. Antonia told me we’d look at it as a chronic disease.

I did the silly thing that all of my patients did. And I knew better. And as soon as I uttered the words, I thought why on earth did I say that? I said, “Scott, how long do I have?” And I knew he couldn’t give me an answer. I felt like a fool. But he said, “This is a chronic disease.” So we debated whether we should consider with the standard chemo or start on something that was more targeted. And we elected to go with the standard chemo, which, in retrospect, proved to be fortuitous I think.  So I had the standard five treatments.

And we thought I’d derive maximum benefits from that and decided I should go on a clinical trial. And unlike many people, I welcomed the opportunity to go on a clinical trial. I think a lot of folks are extremely fearful of it. They think cancer is going to be cured by some mad scientist working in a lab somewhere thinking let’s throw this at it and see if it works. And they’re afraid of being true guinea pigs. I know that clinical trials are based on a knowledge base that folks know about.

And it’s a collaborative effort. So it’s not just a wild stab in the dark. So I was extremely grateful to be a candidate for clinical trial. And I was on the nivolumab (OPDIVO®) trial, the same trial that Pam is on.  I had a really excellent tumor response. My tumor mass shrunk considerably. But, unfortunately, I developed what was felt to be, at the time, autoimmune hepatitis and pneumonitis. I think my immune system was working to kill the cancer.

But I believe it went into overdrive and was trying to kill my lungs and liver as well.  So I was extremely ill. So we had to discontinue the nivolumab.  So it was kind of a two-edged sword. It was helping my cancer, but it was trying to kill me as well. So after a little while, we thought we’d try another agent, and we decided to try crizotinib (XALKORI®), which was a targeted agent as well.  I could only take it a little over three months.

It got extremely ill again with hepatitis. And it was unclear at the time whether the hepatitis was still from the nivolumab effects, crizotinib or both.  But we had to discontinue it. And I was extremely ill that summer. I was really debilitated.  I mean, I was confined to home and bed and wheelchair. I had to take very high doses of prednisone (Deltasone®), which in and of itself made me feel pretty awful, too. It was really hard on my family because it made me wired up, and I was the ogre from hell.

But anyhow…               

Andrew Schorr:

…and wouldn’t do any housework either.                 

Tony Benchina:

I wouldn’t do any housework.  So Susie really got onto my case. And like Pam, I was debilitated. There were times I really could not leave my bedroom, even to have meals.  I lost a tremendous amount of weight. So after I got over that, which took several months, my scan showed that the cancer was on the march again.

So we had to do something.  So I was enrolled in another clinical trial, which I’ve now been on for approximately 14 months. It’s called two-guy trial. It’s a medication that was developed in Japan. And the name of the medication is alectinib.  It’s an ALK inhibitor. I’ve had tremendous results. I come to Moffitt every three weeks. And every nine weeks, I have an MRI of the brain and scans of my chest and abdomen.

And the results have been remarkable, really phenomenal. I had previous lesions at one time or another in my abdominal cavity, around one kidney, my adrenal gland, my liver, neck nodes, lymph nodes in the chest, both lungs, all of that, and a few spots on my spine. Almost all of that is gone now.  I mean, every time I go in, the tumor is smaller. And I thought back in September, if Dr. Antonia is going to do such a great job of keeping me alive, I’ve got to step it up a bit.

And that’s when I started going to the gym. And I feel as though I’ve had a second chance at life.  I described earlier that, when I was really sick and on my first medications, I felt like I was wearing a lead overcoat all the time. And I had this power over me. I had no strength.  And that has been lifted.

I no longer feel that way. I no longer wake up every morning thinking, gosh, I have cancer. And I never stewed about it.  I never got depressed. But it just got me down. That’s gone.  So I’m doing much more than I was. And as I’ve mentioned, when I was first asked to be on the panel, when I got sick, I made a set of goals that I actually put on my iPhone.  The first goal was stay alive. And here it is two-and-a-half years later, I’m alive. My first set of goals were necessities.

Things I had to do in order to keep living. Well, now, my goals are luxuries.  I want to see Olivia’s second birthday, my granddaughter. I want to travel to Europe. I want to take my wife and do all the things that we had planned to do when I retired after 41 years of practice.  So I think I’m well on the way to that now, and, hopefully, my progress will continue.

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.

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