When Mel Mann felt he had exhausted nearly all his options to treat his late-stage leukemia diagnosis, an opportunity to participate in a clinical trial for Gleevec (imatinib) came knocking. In an interview with CURE® Cancer Horizons’ partner publication, he shared the story of his journey and how he was able to surpass his three-year survival mark by over 25 years.
CURE®: I would love for you to talk us through your journey and your experience with Gleevec, especially as it comes up on 20 years since it started in clinical trials and was approved.
My story starts back in 1995, I went by the doctor’s office to get the results of some tests because my back had been hurting for a while, and I had some slight fatigue. He had taken the MRI, and the results came back, and he said that I had a herniated disc, but also my marrow didn’t look normal for someone my age. They ended up taking a simple blood test and they saw that my white count was elevated to 132,000 where it should have been below 10,000. And then they said it’s most likely leukemia, but we have to find out what type of leukemia it is. So they ended up taking more tests. Then they narrowed down to chronic myeloid leukemia, at the time it was pronounced myelogenous. It was a different name, but it was chronic myelogenous leukemia, which is CML. And the doctor said my prognosis was three years. And, of course, I went into shock when I heard that. And he said that the only possible cure or hope for a better outcome or living longer was for a bone marrow transplant — to find a donor. I had a sister and he said that was my best chance. Or if I couldn’t find a sister, that I would have to go on the national donor registry to look for someone, and that my best chance would come from someone on my same ethnic group. There were very few African Americans on the registry at the time, and my chances of finding someone (were) around 1%. Given the statistics from the year before, it was like, less than 20 people out of 2,000 African Americans found a match.
And then it was bad overall for everybody because even for (white people) back then it was only a 23% chance of finding a match. So that really was more bad news, and my sister ended up not being the match, and no one on the registry was a match either, and none of my other relatives were matches. So, I decided to do bone marrow donor drives. I first started off with people that I worked with, and then I spread it out to the churches and then the community, like the malls and fraternities and sororities – anywhere I could find a group of people that could help me.
I was told that my chances of finding a match would not be good, no one had ever found their own bone marrow donor, it’ll be better let someone else do that part. But I felt that I could get more people by presenting myself and telling my story myself, so I started doing the drives. I had already confirmed that it was indeed CML, there was nothing else. The only options that I was told at that time, were a bone marrow donor are to take Interferon, which was the treatment at the time, and I had to take Interferon anyway until I found a bone marrow donor, and that brought the counts back down. It was going to keep me there for three years, hopefully. I didn’t know where I was in that three-year-line, I could have been already a year into that line, so I wasn’t sure. So that’s why my urgency was to find that donor.
When we got to a drive (in Columbus, Georgia), they say, “This guy’s looking for you. He came in, and he said he said he had something to talk to you about, but he left.” So a little while later, about 30 minutes later, he came back and he said, “Hey, these drives are great. You guys are saving lives, and you’re doing this, but I recommend that you look at some other possibilities.” He said he had hairy cell leukemia, and he was near death. He went out to a major cancer center in Houston, Texas, MD Anderson, and they turned his leukemia around. And he had just been diagnosed six months prior to coming to see me. And he gave me all the information. And I followed up on the information, and I talked with the doctor and the nurse. They highly recommended that I come out and see what they can do. So, I flew up to MD Anderson, and I met with the doctor, and the doctor looked at my records and he said, “We still have time, we’ll see what we can do. We want to increase your dose of Interferon,” because my dose was actually too low. And then they were going to try different combinations of drugs and then work to put (me) on clinical trial after clinical trial. So that’s what I started doing.
I would go back and forth to MD Anderson every two to three months, from Atlanta, Georgia to Houston, Texas. So I did that. And sometimes, the drugs helped a little bit, but nothing really made a big difference. And about the three-year mark, I asked the doctor, I said, “Hey, are there any more drugs?” And he said, “Well, we’ve got this one drug, it’s close. It’s in the lab, but we’re having some problems in the lab. But I’ll let you know when we get approval to use in humans.”
I went back home, because that didn’t really sound close to me, but he said it was close because I was already at the three-year mark. And he said I was going to be the first person to use the drug, and his nurse reminded him that he had already told somebody else that they were going to be the first person. So he said, “Okay, you’ll be number two.” And I was glad to hear that, because there was a limited amount of people that could be on that phase 1 clinical trial. There was like 20 people in MD Anderson and 20 at Oregon, and 20 in California.
That was January, so about late July, he called and said they got approval to use the drug in humans as part of a first-in-human clinical trial phase 1. And so I flew back out to MD Anderson. And on August 3, I took my first dose of Gleevec. Actually, it was called STI-571. And I took my first dose of STI-571 on August 3, 1998, and that was about three years and eight months after I’d already been diagnosed with terminal leukemia and given three years to live. So this is my last chance to find something. It worked, it started working. And I could see it working better in other folks because their dose was higher. And because their dose was higher, they had quicker response. In the last month, my dose didn’t work, and they increased it. And then I got up to the normal dose.
And then about maybe two months after that, I ran the 26.2 mile marathon in Anchorage, Alaska for the Leukemia and Lymphoma Society. And about six months after that I cycled 111 miles in Tucson, Arizona also for the Leukemia and Lymphoma Society. So I was back. I was feeling strong. That was in 1999. So I started the drug in 1998, did all that in 1999. But the drug was not approved until 2001. So I was still going back and forth to MD Anderson every three months. And when I first went out to MD Anderson, as part of the phase 1 clinical trial, I had to stay out at MD Anderson for three months, for 90 days. And so I met some of the other patients that were on the trial, and we shared our experiences and our hopes, and we were around in May of 2001 to rejoice when the drug was approved by the FDA. And that was like six and a half years after my diagnosis. So if I had not been on that clinical trial, it would have been three years too late, according to what the prognosis was. And I felt that it was, because I was really weak and gaunt and not looking good at the three-and-a-half-year mark. So the Gleevec completely turned my leukemia around and saved my life.
When I was diagnosed, I thought my only cure was the bone marrow transplant. And I didn’t know that there was a researcher who had this gleam in his eye, this drive and this passion, that was going to find a cure before my three years was up, all my time was up. And that three years turned into 26 years, and it’s going to be 27 years, it’s getting close to that time. My daughter, she was five, and she grew up to be a doctor herself. I celebrated 36 years of marriage, so 26 extra years with my wife. It’s really a lifesaver. It’s a miracle drug, but they do happen. And that’s how they happen, through research, and people getting on clinical trials. I was on some that did not work, but I was on one that did work. And nothing was promised to me. The clinical trials, they offered hope of a better outcome and hope for long term survival. And they turned out to be better than the bone marrow transplant. That little pill, little bitty pill, turned out to be better than this massive operation, which is a miracle.
What were your thoughts going into that clinical trial?
Well, my thoughts going into the clinical trial were that first of all, I was told that my only cure was this massive operation. And I was really curious, how could this pill do what this operation did? Then they were telling me that it was a targeted drug, and it was only going to go for the bad cells and it’s going to leave the good cells alone. And that in itself was a miraculous thing.
I had hope and faith that this could be it because it sounded so different. Then I could see, because I had been on other clinical trials where it would work for a period of time and then very quickly, you could tell, because there’s certain markers or things along the way that they could measure that they could tell that this is not going to be what they thought it was. But with Gleevec, they could see that the way they measured it, hey, and I could see that things were changing with me that had not changed in three years at the at the biological level. So I knew right then, when they started saying, “Hey, you got changes down here.” Not at the blood level because it changed it the blood level, and it changed with other drugs at the blood level, but it went deeper to the biological level. This was a better drug.
As we come up on 20 years since Gleevec’s official approval, what is something if you could go back to tell yourself either at your diagnosis, or as you entered this clinical trial? What advice would you give your younger self now, knowing that you have this glorious life?
I would say to my younger self “Don’t give up, there’s always hope, and no one knows the future. So just hang in there and do the best that you can each day. Live every day, because you don’t know who’s working on what and what’s going to happen, and it’s always possible that a miracle drug can be invented because it happens with the drugs that we have these days.” Throughout history certain drugs come along that change history. And Gleevec is one of those drugs, and you never know what type of drugs are going to be invented. Hang in there, because you could be on one drug, but that drug can get you to live long enough to get on another drug until eventually, you get on the drug that really saves your life. So don’t give up and try all your options. Because there might be more options than you think that there are. And I would say, “Do research, become your own advocate.”
This interview has been edited for clarity and conciseness.
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