In this podcast, IMF Chairman of the Board Dr. Brian G.M. Durie interviews myeloma patient Leo Dierckman, who is now MRD-negative. Leo was brave enough to enter into the ASCENT clinical trial, an aggressive treatment trial for the management of high-risk smoldering myeloma sponsored by the IMF Black Swan Research Initiative.® Leo has done incredibly well. After completing two full years of treatment (induction and consolidation, followed by maintenance), he has now been off all therapy for over a year and is — three years since the start of treatment — MRD-negative. His story of hope and optimism for a potential myeloma cure is not to be missed!
Transcript:
Dr. Brian Durie: This is Dr. Brian Durie, chairman of the International Myeloma Foundation. Joining me today is Leo Dierckman who is a patient who has had high-risk smoldering multiple myeloma, and was brave enough to enter into the ASCENT trial, an aggressive treatment trial for the management of high-risk smoldering myeloma, and has done incredibly well with that treatment. We're very pleased to have a chance to chat with Leo about how this all came about. Leo, maybe we can just start with you telling us a little bit about yourself and your family if you don't mind.
Leo Dierckman: Of course. Sure. I am 58-years-old and have been married for 34 years to my wife, Jennifer. Together we have four children, and their ages are between 28 and 16. It's been a great journey. We met in college in Bloomington, Indiana at IU. We did spend time out in California from I want to say 1989 to '95 or '96 timeframe. It's been so long apparently.
Dr. Durie: No worries about that.
Leo: We had our first two children at Cedars-Sinai Medical Center in Los Angeles.
Dr. Durie: Which I know well, obviously. Wow.
Leo: Then we moved back to the great state of Indiana and had two more children eight years later, and have got two of those through college and another one down in Bloomington at IU, and one more still in high school, a junior in high school. We're not empty nesters, but we're approaching that era in our life I suppose, unfortunately.
It's a pleasure to obviously have this opportunity to speak with you and hopefully motivate and provide insight to your audience in regards to multiple myeloma and the study, and what powerful things that has created a change in my life after being diagnosed with multiple myeloma in approximately 2009.
Dr. Durie: Tell us a little bit about that. How did that diagnosis come about?
Leo: I was a blood donor and I had been rejected a couple of times because I was anemic. I then went to my general practitioner. I always got an annual, I still do, get an annual exam with blood tests, and so forth, and she discovered an issue with my blood with a high protein level. She then brought in a specialist to look at that and it was discovered that I had smoldering multiple myeloma at that time. Go ahead.
Dr. Durie: What were some of your early test results? They discovered that that high protein was because of myeloma protein in the blood. Was that an IgG protein or what type of protein was it that they found?
Leo: I don't know. I apologize for that.
Dr. Durie: It's okay.
Leo: I don't remember what it was. Obviously, I have some numbers here in front of me, but it's kind of Greek to me. [chuckles]
Dr. Durie: That's okay. Then obviously they did a bone marrow test, and then they found that there was some increase in the plasma cells there I guess, right?
Leo: Yes, exactly. There was smoldering myeloma that was discovered. I was decided at that point with my oncologist to take a wait-and-see position, approach because he was very positive on rapidly changing environment for the treatment of multiple myeloma patients and said, "There's really nothing that we need to do right now. We can wait and see. If we're fortunate, we'll be able to have some additional drugs discovered and a new drug combination that perhaps would lead to a better outcome than what we would do currently for you. They're becoming more and more patient-friendly and less negatively impactful on your body."
Dr. Durie: A lot of very, very good advice there from your doctor I would say. [chuckles]
Leo: Exactly. With that, at that point in time, I really didn't know anything about multiple myeloma, so I began a search process, and that always obviously starts with the internet and things of that nature these days. I did a lot of work on researching it, what it means, what it is and what are the therapies, and what the potential outcomes are, and things of that nature. I was involved and still am involved with St. Vincent, Ascension Health, at various hospitals here in the Indianapolis area. I've met their person that was in charge of their oncology department.
Her name was Linda… and she ultimately actually went to work as a director with the Cancer Support Community. I believe their headquarters are in the Philadelphia area. She introduced me actually in 2010, I was a patient advocate for them with multiple myeloma. She had asked me to participate because she knew of my participation with St. Vincent Health, there are some St. Vincent hospitals here in central Indiana. I actually met Dr. Craig Platt and Dr. Joe …who I believe you probably both know.
Dr. Durie: Yes, absolutely.
Leo: Oddly enough, I met them in 2010 and I stayed in touch with them because we both served on the same committee for the Cancer Support Community and it was the National Patient Registry Board. At that time, I asked Joe, I think we were heading to the airport or something. We were in a car together and we were heading to the airport after a meeting in Philadelphia. I said, "Hey, Joe, if the time ever comes that I need to have actual therapies started, would you mind if I reached out to you and talked to you about what my physician was contemplating?"
He said, "Absolutely, no problem." Over the years we stayed in touch through the Cancer Support Community. I guess it was about 2018, my physician at St. Vincent suggested that we start treatment, that the protein levels were starting to rise to a place where treatment was probably appropriate. I was starting to get some preliminary bone damage or very- actually, no bone damage, but the levels were starting to get elevated.
Dr. Durie: Was it at this point that you got referred, and I believe you met up with Dr. Rafat Abonour, right?
Leo: It's a really small world. I reached out to Joe, and as you know, he was at the Mayo Clinic at one point. He had just switched over to the IMF, obviously, thank God, the institution that you founded. I said, "Joe, my doctor said it's time for me to start some treatments, and I wanted to know, in the Indianapolis area, I had done some additional research for a second opinion, and I found an individual physician that was highly regarded, Dr. Rafat Abonour." I asked if Joe knew him and he said, "I absolutely know him, and in fact, I'll put you in contact with him right now." I said, "Fantastic." He said, "Because he's actually part of a study that we are commencing for patients that are precisely in the position that you are in at this time."
That was in April or actually in May of 2018 when Joe and I hooked up and exchanged emails and talked. I was with Dr. Rafat Abonour two days later. I had received an email from Rafat and he said, "Absolutely, I'd love to meet with you. Let's look at your chart, we'll do some review." He said, "Your physician is right. However, I'd really like for you to consider being a participant in our study that we're just now commencing, and actually, you're going to have to wait two weeks, but then you'd be perfectly qualified for this study."
Obviously, I was very enthused about that. I'm a big believer in your legacy is only what you leave behind in the form of your actions and deeds. Being able to participate in the study that might be able to help other multiple myeloma patients was just perfect for me. I just had no question whatsoever.
Dr. Durie: That was very, very fortunate connections, and friendships mean a lot and can help everyone out as we collaborate together. It is amazing.
Leo: Second opinions are critically important for all multiple myeloma patients. Without that concept of the second opinion being drilled into me by all the various folks, including your website and Cancer Support Community's websites, and other people, there was nothing wrong with the opinion I got, it's just seeking out that second opinion led me to a very different kind of an outcome than I would've otherwise ever believed that would be available to me. Being able to participate in a potential cure for multiple myeloma was mind-numbing.
Dr. Durie: Absolutely. Fast forward two or three weeks, the trial got opened up. You were able to take a look at the details of this trial, and then you, I guess, got started fairly quickly probably.
Leo: I did. We had planned a trip to Italy with our church group. I got qualified and everything, and then once we returned from that trip, I immediately started the regimen with Rafat, Dr. Abonour.
Dr. Durie: Obviously, this is a very strong combination. For our listeners, this protocol that was opening up is a trial called the ASCENT trial which has the intent, the lofty goal of really attempting to cure patients with this type of early phase of myeloma, what we call high-risk smoldering myeloma. The treatment consists of four medicines, the daratumumab, which is the monoclonal antibody against CD38, and then the drug combination of Kyprolis, which is what we call a proteasome inhibitor, similar to Velcade, Revlimid, which is one of our IMiDs, plus dexamethasone. It's a strong combination. How did you manage as that treatment was getting started?
Leo: It is obviously a pretty strenuous regimen of drugs, and I apologize, just one step back for a second to say, having this study available and having the ability to be the first patient to participate in it and all the work that you and the IMF have done, and I know that your organization has led this study on behalf of all multiple myeloma patients, I just can't tell you how much it is greatly appreciated and the investment, time, dollars, money, and effort over the years leading to this potential is monumental and greatly appreciated by all of us.
Dr. Durie: Thank you so much for that.
Leo: It means so much to us. I don't want to digress, but I wanted to make sure I got the opportunity to say that to you personally, and to your entire staff, obviously, your wife and everybody that's involved with IMF because without you and this team, we wouldn't be where we are today with this disease. Yes, I would say that--
Dr. Durie: Thank you. Thank you.
Leo: Thank you, thank you, and I mean that from the bottom of my heart. I know there are other people out there who feel the same way, a lot of other people, so thank you. The regimen, yes, it was intense. I would say that as a result of knowing Joe and Craig and then meeting Dr. Abonour, I had a great deal of trust, already had developed a great deal of trust with Joe and with the organization, and their real true dedication and honest efforts towards helping multiple myeloma patients for all the right reasons. his opportunity- given the timing of it, it just felt like it was a message sent from God that I had to participate in it regardless of how strenuous it was and how challenging it would be from a physical standpoint. I would tell you that a reason why the name of the drug- it's 21 days of the pill that I had to take-- Geez, I apologize. I'm just escaping the name of it.
Dr. Durie: Revlimid, yes.
Leo: Thank you very much. Revlimid for 21 days. I now fully understand why they don't have it for 22 days.
Dr. Durie: [laughs] Yes, it can be tough, yes.
Leo: It is tough. I will tell you, the results speak for themselves, and it is manageable. It's wearing, but again, an alternative to the heavy-duty therapies, and that became much more manageable over time-
Dr. Durie: Right. You moved into the consolidation and then into the maintenance. One of the big aspects of this particular trial is that it's a contained block of treatment. In other words, there's an intent to have this aggressive approach, but then after the two years, you complete the treatment, and then you're off the regimen. It's a powerful effort to really do the best drug possible in that timeframe.
Leo: Yes, and it was manageable. I really did not-- I honestly think I only missed one day of work over the two-year period. I was able to continue to work and be sharp at my desk and be able to manage our business affairs and manage accounts and client relationships and so forth just fine.
Dr. Durie: That's fantastic.
Leo: You just take it in stride. Focus on eating healthy, getting a lot of rest, and knowing that after two years, the outcome could be phenomenal, number one, and number two, that you're completely off all of these drugs, and I would-- Doctor, I'm now 15 months with taking no drugs whatsoever associated with multiple myeloma.
Dr. Durie: This is a phenomenal off-treatment period. Before we get to that, I do want to ask you more about that because it is so important, but as you were moving through the treatment, when was that first moment where Dr. Abonour was able to say that you had reached that excellent response, where the minimal residual disease test came back at a negative level? At what point did that happen for you?
Leo: It was amazingly fast. I want to say it was within four to five months. Happy to provide you with the charts, but the impact was virtually immediate considering that I'd only been on this regimen-- The first couple of months, your body's still getting adjusted, so you have a lot of capabilities to handle it, but after about five to six months, you're starting to get worn. Then you get this great news, so it's like, "Hey, it's all right, it's going to be okay." That's the first stage and the most challenging stage.
Then the next stage is obviously, become a little bit more user-friendly, patient-friendly. Knowing that you have an excellent prognosis, and knowing that this is not something that-- It becomes something that is no longer going to be the reason for your death, but it's actually going to just be a managed set of circumstances.
Dr. Durie: A manageable situation, yes.
Leo: Or perhaps one that you don't have to deal with at all ever again, which is what we're all praying for, of course.
Dr. Durie: Exactly. My gosh.
Leo: Myeloma is no longer an end-all. We can help all of our patients by getting blood tests routinely, and doing that at an earlier age in your life and doing it each year, and medicine, that is prevention, and catching things early is the name of the game. I'm walking, talking proof of that.
Dr. Durie: Absolutely, well, this is just such a positive story for everyone who is listening to us today. I have to say that your strength and resilience through all of this is really inspiring. You're just strong in every way, both mentally and obviously, physically, to come through this therapy in such a sterling fashion. This is really good. As you move forward, you came in, and then there was that end to the treatment, that last round of medicines, and then you've been off for 15 months now, which is phenomenal.
Leo: Yes, and I feel great. Obviously, thank God for the outcomes and Him putting these people in the places where they became in my life, at the right times, and so forth to make an impact. I really think that anything that any of us can do that are listening to help our fellow patients and fellow man through making efforts to make future generations of other people, to make it easier for them, then that's what we have to do and should do.
For me, it was a real, very easy decision. I know it's not an easy decision for everybody because not everybody has the same connectivity. Oddly, it's my very peculiar connectivity, but I would promote that people do their own homework and do their own research and be their own best advocate so that you can create these kinds of relationships as you move down your healthcare road so that when the time comes, they are in place and you have trusting relationships with people that can help you lead to proper and great decisions for your own health and your family.
Dr. Durie: Tremendous advice. Thank you so much for that, yes. Obviously, turned out to be very helpful and important for you, but I think that for everyone, this is very good to be looking forward where you have your connections in place so that when that decision comes along, you can be ready to have good input to have the best decision possible. It's just so wonderful to have a chance to talk to you and hear how well things have gone. Now, how often do you go in to see Dr. Abonour now?
Leo: I go in every three months. I actually just saw him last week and he's doing very well. He is a phenomenal physician with his patients, and you couldn't ask for a better advocate, a physician to be on your side of the table and looking after your best interests. He is phenomenal.
Dr. Durie: He's a great guy. When was the last time that you had a bone marrow test?
Leo: It was about five months ago. I had that. I've had all my treatments, and Dr. Abonour obviously is associated with Indiana University Health. Again, go to your best health care, the best physician regardless of the network they're in for any specialty that you need help with, and they did a phenomenal job. Bone marrow extractions are not a whole lot of fun.
Dr. Durie: Absolutely.
Leo: I can tell you that they get easier with time, and the more you had-- In my entire 12 years of this process, I think I'm up to, I don't know, 8 or 9, maybe even 10. Each time I get one done, it seems like it gets a little bit easier.
Dr. Durie: I'm glad to hear that. Yes, it's not fun at all. Anyway, very, very important to inform us about the status on those recent results, in your case of being tremendously good, very, very encouraging. Based on what we know, and you're already indicating it, is your rapid response, your sustained response up to these 15 months of treatment. These are very, very positive and encouraging indicators that, indeed, your longer-term outcome is going to be in good shape. It's just so encouraging.
I certainly very much appreciate your willingness to give back your experience and your words of wisdom. Stretching a hand back to patients who are coming along next, to try to guide them and to help them is just greatly, greatly appreciated.
Leo: Well, it's an honor to be able to help other people. I only really do it because it helps me. It helps me be a better person by helping other people. The biggest benefit is the person that's giving the help because it makes you feel good to help, good about the world that you're living in. There's a lot more out there to be positive about than people come to realize many times.
Dr. Durie: That's right. You have to look for those positive things, enhance them, and embrace them, yes. I just want to close by thanking you so much. I do believe that your story will be inspirational for so many. I'm optimistic that the outcome, as I say, will be excellent in your case.
Leo: I continue to monitor it every year. Hopefully, we'll make it to 5 and in 10 years maybe we can make some kind of official announcement about multiple myeloma.
Dr. Durie: That's right. We'll be there together. As the first patient, you'll be there. I don't know what your beverage of choice is, but we can certainly have it available, okay?
[laughter]
Leo: God bless you. Thank you so much for this conversation.
Dr. Durie: All right. Have a great day, Leo. Thank you so much.
Leo: Okay. Take care.
Dr. Durie: Bye-bye.
Leo: Bye.
