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

Confidence in Your Care: A Team Approach to Treating ALL

Read Transcript
View next

Published on March 12, 2020

Key Takeaways

  • Breaking up long treatment plans into short-term, manageable goals creates wins throughout treatment.
  • Assigning someone to be the patient’s “Communications Manager” to keep everyone informed lets the patient focus on treatment and getting well without feeling overwhelmed.
  • Doctors, especially acute lymphoblastic specialists, see patients in a variety of stages in treatment, and they can help navigate options or explain test results.

When Jud Logan’s daughter, an oncology nurse practitioner, learned her dad received a B-cell acute lymphoblastic leukemia (ALL) diagnosis, she told him, “That’s a treatable one, Dad,” and sought out a specialist.  

Jud, a former Olympic athlete determined to get the best care available, then connected with leading expert Dr. Hetty Carraway at the Cleveland Clinic to help navigate his ALL care, which led to him participating in a clinical trial. Jud’s daughter and doctor were two instrumental parts of his team, but certainly not the only ones rallying behind him. 

How can ALL patients develop a network for guidance and support? During this Partners program, Dr. Carraway and Jud join Andrew Schorr to share tips to help others build a team of doctors, family and friends after diagnosis. Watch to hear Jud’s story and learn ways to strengthen your ALL care team. 

This program is sponsored by Amgen and Adaptive Biotechnologies. These organization has no editorial control and Patient Power is solely responsible for the content. It is produced by Patient Power.

Featuring

Transcript | Confidence in Your Care: A Team Approach to Treating ALL

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 and welcome to Patient Power. I’m Andrew Schorr near San Diego in Carlsbad, California. We are talking about ALL, acute lymphoblastic leukemia. We have a noted expert with us, Dr. Hetty Carraway from the Cleveland Clinic. Dr Carraway, thank you for being with us.

Dr. Carraway:

Thank you for having me.

Andrew Schorr:

Okay. And you have brought along a patient, and not just any patient, but a former Olympian who's living with ALL from Ashland University in Ashland, Ohio, the track and field coach, right? And that is Jud Logan. Jud, thanks for being with us.

Jud Logan:

Anything that I can do for Dr. Carraway.

Andrew Schorr:

Well, thank you. And what we're going to talk about is what she's done for you. So first of all, just to review, so you were diagnosed in March of 2019, right?

Jud Logan:

Correct.

Andrew Schorr:

With low platelets, bruising. And you have a daughter, Jenna, who's an oncology nurse practitioner. You told her you were bruising and she said, "Get to the hospital," right?

Jud Logan:

Correct.

Andrew Schorr:

And you get to the hospital and low platelets, you go away, they say, "No, come back to the hospital." And then they say you have leukemia. That's got to be devastating.

Jud Logan:

Well, I went back to the hospital, and then they transported me to university hospital in Cleveland, and I was there for five days, and they ran some tests. They put me on some high-dose steroids. They thought I had something else that was going to be very, very treatable. They said, "We're going to send your blood away just to make sure it's not one of the big guys, but we're 95 percent sure it's not, because your blood markers are so good." And about three days later, the doctor walked in and he said, "I have some bad news. Our diagnosis was not on point. You have B-cell ALL."

My daughter was in the room, because she was on maternity leave and immediately she said, "Wait, you said B-cell ALL? Dad, that's a treatable one, and there are ones that are way worse. I need to make some phone calls." And she made some phone calls, and her boss who used to work at Cleveland Clinic said, "I want you over at Cleveland Clinic, and I want you with their team. And specifically, hopefully we can put you with Dr. Carraway." And within 24 hours, I was in Cleveland Clinic.

Andrew Schorr:

Okay. So there's Dr Carraway. Dr Carraway, this speaks to an important point, I think. You are an acute leukemia specialist, given the changes that are going on with acute leukemias now clinical trials, and we'll get to it where I know that Jud has been in a trial. How important is it to at least if you can see like you or have you consult on their case?

Dr. Carraway:

I think this is a very important take-home message for most patients with this diagnosis. It is very important to have an area, a specialist that focuses on the treatment of ALL. I think it is very important to consider clinical trials in this space, because of the novel agents that have been approved in the last three years. And so for that reason, I definitely recommend that.

Andrew Schorr:

Now, let me tell you a little bit more about Jud. And, Jud, you help me. So, you've been in four Olympics over the years. You are a track coach where your team has been NCAA champs at your level, right? You've been coach of the year, right? And you are a guy who competes if you will, and your kids compete. So this is the fight of your life, right?

Jud Logan:

100 percent and I'll never forget, and Hetty and I laugh about this, but she walked into my room with a clinical trial nurse with an intern with all these people, nurses. There were six or seven people in the room. And she walks in and we meet for the first time and she says, "Well, let me tell you how this is going to work." And I put my hand up and I said, "Stop. Can I tell you how this has to work?"

And she took a little bit of a drawback and said, "Uh-oh. I got somebody who's not going to be easy to work with." And I just said to her, "Look, for this to work. You are now my head coach. This is the only way I know how to attack this disease. I want to play for you, and I not only do I want to play for you. I want to be your best player, and you're the best. I want to be the best. And so you're going to have to give me short, intermediate goals. I understand what the long-term goal is. But as an athlete and as a coach, I know that the building blocks of success come in short, three- to four-week wins." And she looked right at me, and I didn't know what was going to come out of her mouth next, and she said, "You and I are going to get along just fine."

Andrew Schorr:

And, Dr. Carraway, and we all call you Hetty, but that worked out that well. You've had a team with Jud and his family and that's important, right?

Dr. Carraway:

Yeah. You can't even underestimate just the value of that relationship. I think that just has been the core of everything for Jud and even for his management. It's just a force to be reckoned with, to be part of this family. And I definitely feel like we work together to meet those goals, whether they're goals within a week or they're goals that are going to be attained a year later.

Andrew Schorr:

Okay. Let's talk about your support structure Jud. So you have a 85 kids tied in with your track and field team. You were in the Olympics and Pan American games, and you know athletes around the world who heard about your situation. You got three kids, and I guess you have a grandkid now, right?

Jud Logan:

I have five grandkids.

Andrew Schorr:

Five grandkids. Oh my God. And your daughter, Jenna, who you mentioned, she's actually an oncology nurse practitioner at the University of Virginia. So you have this tremendous team and a wife of 34 years, Jill, who slept in your room for 15 days when you were hospitalized. So how important is a team when you are going through acute leukemia?

Jud Logan:

Well, it starts with a belief. I had belief in my doctors right from the very beginning, the nurses on G-111 and at the clinic to the rotating doctors to just the way that I was taken care of gave me a sense of belief that I was with the best. But to have the support system of my family, my brothers and sisters, my mom, but more importantly my three kids and then have an oncology NP in the family that could translate all of my medical blood work and tell me how I was progressing and tell me what these terms mean.

But my wife was at the center of that. I kept trying to send her home, and she was not leaving that hospital. And so just the support of family and my own kids and the kids on the team and the messages that came in worldwide. I had to shrink that though. I had to rely more on that inner circle. And so we went to the blog system for the outer circle, and we appreciated the prayer warriors, we appreciated the text messages, the inbox messages, the social media support. But when it really came down to it, it came down to family.

Andrew Schorr:

Now let's just mention something that's so important. You talked about communications, so Jenna could translate oncology terms, Dr. Carraway and the team would talk about drugs in blood counts and this and that. What does it all mean? How you doing, what's next? Et cetera, and so there's a service called Caring Bridge, which I know she has used to provide updates to that wider circle. So everybody's in the know. And I think I would tell anybody where there's a serious diagnosis—certainly ALL—have a communications manager so that you, the patient can work on getting well and those good wishes come in, but the communication goes out and keeps everybody informed. I think that's important.

So, Dr. Carraway, back to you, you mentioned that things are changing in this field, so he was hospitalized for a couple of weeks, and certainly chemo has been part of all for a long time, but you have other options that are going on now. And I know that Jud is having a medicine where he's had a little fanny pack and I think an immunotherapy that's a continuous infusion. Tell us where this field is going.

Dr. Carraway:

Yeah, so I think in particular for ALL the current study that Jud is involved with is actually pretty exciting and important for us to be able to offer to patients. There's the drug that he's on is called blinatumomab (Blincyto), and it's a well-tolerated medicine that is now FDA-approved for patients with ALL that have relapsed. And so because it's such an effective agent in the relapsed setting, there's interest in trying to bring it to the forefront in the up-front setting, because it's well-tolerated. Now many of you may not know that ALL is managed by multi-agent chemotherapy. So there are a lot of pieces of therapy that go into the recipe, for lack of a better word, in terms of treating this type of cancer. And so how best to incorporate this newer drug into the upfront therapy for all is what this study is investigating.

So, for some patients that are on the study, they will have the introduction of this agent and for other patients on this study they won't. And that is randomized, and obviously Jud knows that he got randomized to receiving this therapy. And we're trying to ask the question how well-tolerated is it in this particular administration, and is it effective, and is it benefiting those patients in the up-front setting?

This type of therapy he would not be able to get if he was not enrolled in a clinical trial and this clinical trial for this type of diagnosis, it's not a very common diagnosis to have. So these types of studies have to be deployed across the nation. So, this study is part of a cooperative group, something called ECOG or Eastern Cooperative Oncology Group or SWOG, Southwest Oncology Cooperative Group. So we work together to put patients on large studies that are deployed throughout the nation so that we can get enough patients to inform the outcome and the result. It's a big deal. It's a big deal.

Andrew Schorr:

How you doing, Jud? You don't have the fanny pack on right now. You have different cycles, but when you do and you're getting this continuous infusion while you go about your activities, how is that?

Jud Logan:

Honestly, I've done very, very well on it. They told me that I could have nausea, I could have mouth sores, I could have lethargy, and I've been on the cycle twice, and I've had none of those. And so I've been very fortunate. And I think one of the things for me is that all the doctors at the Cleveland Clinic that I met with had said, "Yes, you've got to sleep. Yes, you've got to take care of your diet. You've got to take care of your hygiene. You have to do all of these things if you want to give your best chance to get better, you've got to have a support system." But that's 10 percent, 90 percent is how you mentally and physically  believe in yourself and have the willpower to maybe be ready for everything, but be hopeful that you may not have all of the side effects that everybody else is having.

And so, I just think that my positive mental attitude has saved me from quite a few of those things. I said from the very beginning that I was built for this. I told my kids on the team, "Don't worry about this. Look, I've been through Olympic trials, I've been through hard work, I've been through Olympic games, I’ve busted my butt my whole life. I know what hard work is." And so I just asked two things. I said, "Number one, I'm built for this. And number two is I'm not asking for easy. I'm only asking for possible." And so the fact that I've been shown those possibilities by Dr. Carraway and her staff at the Cleveland Clinic, yeah, there have been times that I have been nauseous, and I have been sick and I didn't feel like doing this. I didn't feel like doing that.

But I've only missed three days of work and in the last seven months, and that's pretty amazing for somebody. I'm 42 weeks in remission right now. And that's the result that I want to keep going. And I believe a lot of that has to do with how you attack every day and the mental attitude that you have. Right from the very beginning. I told Dr. Carraway, “One thing, I will never go on Google. I will not look at how many rates of survival or what my chances are and what this means or what that means. You tell me what I need to know. My daughter will interpret the rest for me, but I'm not going to be the person that is looking for the miracle cure in Mexico or special diets or things like that. For me it’s just about trust and belief in my system and I, I believe that I have the best team available.”

Andrew Schorr:

Wow. Wow. So, Dr. Carraway, as he describes this, and he's has this a fanny pack that he's put on for different cycles in a trial for patients who have not relapsed, but in more initial treatment, do you feel that the field is changing and that there are positive things going on to offer hope to people?

Dr. Carraway:

Absolutely. I think there are a lot of positive things, particularly in the last three years for patients that even add more hope to the outcomes for patients. And I think being involved in that as a patient and moreover even as a clinician and as physician I think is just really important to me. And part of that is teaching patients what they need to know that caregivers, what they need to know and why it's important that they understand the implications of these very important. And we're fortunate to actually witness the fact that these agents are here and in this space. I can tell you that I've had mentors that have been in this space for 30 to 40 years and really have not seen the addition of important agents like this. And so I feel very lucky to be able to help patients have access to these important drugs. Now's a very important time for us to be a part of the team and engaging everybody as much as we can.

Andrew Schorr:

I want to touch on one other thing and that is besides the changes in treatments in the addition of some very promising experimental approaches as well, you have more sophisticated testing than ever before. Recently we did an interview also on Patient Power with a specialist named Dr. Aaron Logan. You may know him, he's at UC San Francisco. He is talking about a more sophisticated testing—particularly measurable residual disease testing, MRD testing. And so now, and I know that Jud has had this, you're doing testing along the way to kind of see how you're doing and there's this measurement going on where you can see better than ever before, right?

Dr. Carraway:

Yeah. We've had the ability to follow minimal measurable residual disease, particularly in the children's oncology group protocols. It's really where a lot of the data has emerged for ALL. So both in the COG studies and also over in Germany, they measure measurable residual disease by a different test looking at IgG or PCR levels. And the flow cytometry study that we have here is equally impressive, and we can detect very small amounts of disease and that helps us to better understand whether or not we have optimal control. And certainly it allows us to feel like if we need to do something different or ramp things up in a different way, then if we need to do that, we're positioned to do it with the novel technology in place.

Andrew Schorr:

So, Jud, it's easy and I'm a patient too, to get down if my counts are not the same way they were the last time, they went in the wrong direction. How are your moods affected by blood tests, if you will, or how do you keep positive?

Jud Logan:

Well, I've been a blood test warrior so far, but I do understand that. I just this morning had some low platelets and low ANC and low hemoglobin from this last cycle that I was on, and I came back today four days later expecting those numbers to have spiked, and they didn't budge. I don't know if Dr. Carraway has had a chance to talk yet to Sam Bugatti, but my numbers didn't budge, and that's a first for me. And she said to me something very important. She said to me, "This may not be the norm for you, but it's the norm for us. And just because you've exceeded every time doesn't mean that you're not going to have these little blips." And that just made me so much assured that this is not something that—it wasn't a failure. It was something that she said that was expected and it's happened before. It's just that you're so used to beating the scores up, that this little bit of a down just shows that you're human.

Andrew Schorr:

So, coach, you have sprinters on your team and you have distance runners on your team and you were a hammer throw Olympian, try to throw it way the hell over there. How do you view this race for you?

Jud Logan:

I look at it in four- to six-week increments. I know that my ending date on this clinical trial is sometime in June. That's amazing. I know that I'm going to have another bone marrow biopsy. I know that I'm going to have inner fecal chemo and a lumbar puncture, which are not my favorites, at least two more times. I know even being at the end of the trial that for the next 18 months I'm going to be every three months receiving some chemo agents as part of the maintenance part of this. So yeah, it's a marathon, you know more than anyone with your son being a marathoner that that's hard. That's hard training. It's hard to sometimes know where that finish line is, but I just go by the three to four weeks, small intermediate goals. Tell me what I'm going to do next.

Tell me how to best prepare. Let's beat this next month and then explain to me where we're going next. So I've never really asked for the whole picture, the big picture. Tell me what I've got in the next four weeks and as we finish that, tell me where we're going next. And each one is a little mini-challenge. Each one's whether that's a sprint or a mile. I've had both. But to me it's about the team. It's about your energy. It's about bringing that fresh personality to overcome odds and understand that it's not always going to be easy, but as long as someone tells me that it's possible, I'm built for this.

Andrew Schorr:

Wow. Well, I have one last question for you, Dr. Carraway. So you have families like that, and you're going to have new families are going to come to you in the next week or the next few weeks. What do you want to say to a national or even an international audience as a specialist in ALL? What would you say to families so they can help you help them? Are there some tips you'd give?

Dr. Carraway:

Yeah. I think there one is I think just hearing the message build your team. And your team can be your immediate family, but it doesn't just have to be them. And for others it can be a core group of friends or it can be a core group of co-workers or it can truly be the team at the hospital, the people that you rely on. And I think from that standpoint it's a really important message to realize that that is going to add the additive to what true hope is. There are going to be good days, there are going to be bad days, but all of the days having your team by your side makes a big difference. And I think that's what you heard and what resonates most with the things that Jud and I have worked on together as core principles.

Andrew Schorr:

Okay. One other point. What about questions? People are sometimes they're so terrified, it's a terrifying diagnosis and a sudden diagnosis. About asking questions. You and your team and you mentioned Sam I guess who's a research nurse, Jud, about asking questions, not being afraid to do that.

Jud Logan:

Yeah, you have to trust your team. And when you have a question, there's been many times where they've explained something and at first, I held my tongue and then just waited to call my daughter. And now I'm at the point in the relationship that I just say, "Okay, now explain this one more time because I'm just a little confused here." And what you'll find is that they're very patient and will go over it again until it makes sense.

And so that's what I value in my experience so far in the Cleveland Clinic is just I haven’t felt like there's ever been a doctor that came in to see me that was in a rush to get out, that if I had questions it may go 15 to 20 minutes longer than they probably suspected that that appointment was going to take. But I've never felt any of my doctors or any of my research people that were like, "Let me get back to you by email. I've got another patient." I've always felt like when it's my time, I'm the most important thing in their life at that moment.

Andrew Schorr:

All right, Dr. Carraway, just a final for you then. So questions are okay. Dialogue is okay. Team is okay.

Dr. Carraway:

I would 100 percent agree with that. And I underscore that with the caregivers and the patients that you need to advocate. If you're not understanding something, you need to ask about it so that you do understand it. And I think your team should be receptive to that because it's your health and, and that's what everybody's investing in and it's absolutely okay to ask questions.

Andrew Schorr:

Dr. Hetty Carraway from the Cleveland Clinic, I want to thank you for your devotion to Jud and his family and many patients and families like them, and we wish you great success with your research. Let's cure it for everybody, right? And thank you so much for what you do, Dr. Carraway.

Dr. Carraway:

You're welcome. Thank you for having me. It's a delight, and I'm inspired by people like yourself and as well as Jud.

Andrew Schorr:

Thank you so much. And, Jud, all the best you, coach, and we just want you to keep on going down that track and throwing that hammer with Jenna, your oncology nurse practitioner, a daughter and an extended team and your wife, Jill and all those grandchildren, all the best for a long life. Jud Logan, thank you for being with us, coach.

Jud Logan:

Anytime you need me, I'm here.

Andrew Schorr:

Okay. Andrew Schorr with Jud Logan in Ashland, Ohio. Dr. Hetty Carraway in Cleveland. And remember folks, lots going on, and knowledge can be the best medicine of all. 

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