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AML Diagnosis: Signs, Symptoms and First Steps

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Published on November 27, 2019

Key Takeaways

  • Symptoms that may be signs of leukemia.
  • Get to a doctor or emergency room for tests right away if you suspect leukemia. 
  • Starting treatment and seeing a specialist quickly for AML is essential.

Acute myeloid leukemia (AML) patient Jerry Brennan and his doctor, Dr. Pinkal Desai from Weill Cornell Medicine, discuss the symptoms that raised concerns, Jerry’s initial doctor’s office visit and steps he took to get the care he needed.  Dr. Desai also explains why it’s essential to see a specialist when you receive an AML diagnosis, the value of clinical trials and how adding novel agents to the standard care can improve a patient’s outcome. Watch now to learn from AML experts.

This is a Patient Empowerment Network program produced by Patient Power. We thank Astellas, Celgene Corporation, Daiichi Sankyo and Jazz Pharmaceuticals for their support. These organizations have no editorial control. Patient Power is solely responsible for program content.

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Transcript |

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.

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:            

How were you feeling five years ago that sent you to the doctor in the first place?

Jerry Brennan:             

That’s a great question. I was very fortunate from the beginning because I was feeling fine, no symptoms, went to work on a regular morning, and about an hour after getting into work, I had a weird sensation, and the best way to describe it was weak and clammy. I knew something was wrong; I just didn’t know what.

Finally, I said, “I must have a virus,” and I left work. I was gonna go home, take some Tylenol, and take a nap, and on the way home, I had remembered I had a tick on me a couple of weeks prior, and by the grace of God, I decided before I go home to stop by—I called my doctor and said, “Hey, I think I have Lyme disease. Can I come in for a Lyme test?” He said, “Sure.” Just lucky that he found some stuff, and we proceeded from there. 

Andrew Schorr:            

Right. Of course, at one point, you were asked to go to the emergency room, and they did more blood testing. Back to your internist, and your internist said, “I think you could have leukemia,” right? Pretty terrifying.

Jerry Brennan:             

Correct. My primary doctor called me later that same afternoon. When I left his office, he said, “You probably have a virus, but I’m gonna pull some extra blood and check on a few things.” He didn’t say what. Later that afternoon, he was calling me, saying, “Hey”—he was asking me questions first, like “How are you feeling?”, and I’m like, “Great. I had a great nap, and I feel great.” The way he was asking me, I knew something was wrong, and I said, “Doc, what is it?” He said, “Your blood counts are low, and I’d like you to get up to the emergency room as soon as you can.”

Andrew Schorr:            

That’s what’s happened with many AML patients. The doctor says, “Go to the emergency room now,” or somebody goes to the emergency room, because they’re feeling so terrible and so worn out. Okay. So, your internist was a pretty smart person who said, “I need to connect you with a specialist,” right? That brought you to Dr. Desai in New York City.

Jerry Brennan:             

Correct. I got a call, went through some more bloodwork a couple of times, and on a Saturday morning, the phlebotomist from the group had called and said, “Hey, I hate to give you the news this way, but I wanna get it, because we have to get moving on this. I’m sorry to tell you, but you have leukemia.” He asked me a couple questions about how I felt about different hospitals; one of them was Weill Cornell.

I said, “Doc, I know it’s a great hospital, but other than that, I don’t know. You tell me. What’s the difference?” He said, “Well, if I go here, this is what the process is, but if I go to Weill Cornell, I’ll call you back in 10 minutes with an appointment and a doctor’s name.” True to his word, I got the call, he said, “You have an appointment at 10:00 a.m. Monday morning with Dr. Desai,” and that was my second blessing.

 

Andrew Schorr:            

Okay. I know you think she’s an angel in your life. Here you are five years out. Dr. Desai, I wanna ask you a question. I understand that AML is not always a five-alarm fire, but sometimes, like in Jerry’s case, it can be, where you have to get on it right away. Could you describe that? People wonder with these symptoms, could they have had them for a long time, or is it like this happens, and then you have to be in the hospital right away? 

Dr. Desai:                     

With AML, the issue is that most people will have some degree of count abnormalities for some time, and most patients feel it in the form of either they get tired, like how Jerry felt, and that’s how it’s caught. So, it’s considered acute leukemia with the concept that when—it’s not something that you live for months before it gets diagnosed. Most of the time, a few weeks of it, the counts are low enough, and something happens—either a fever or some symptoms that prompt someone to do a CBC, and thereon, go to a specialist.

Now, some patients with leukemia can present with a very high white cell count, which is always extremely dangerous, and those are the people we really are worried about because you don’t want that to linger on for too long because that can infiltrate organs, and you can have somebody really sick come into the hospital, and may have major complications, even after we start chemotherapy. So, generally, the idea is that if someone is suspecting acute leukemia and acute myeloid leukemia, the leukemia center and our specialist has to evaluate the patient right away.

So, many times, depending on the blood counts, we tell them to go to the emergency room if the white cell count is too high, but if the white cell count is somewhat decent, usually, it can wait for a couple days, but usually not more than—we don’t advocate people sitting around with low white cell counts because any infection that can happen in this setting can be dangerous. Once the suspicion is there, they need to see a leukemia doctor right away.

Andrew Schorr:            

 So, Jerry, you were hospitalized pretty quickly, weren’t you? 

Jerry Brennan:             

Yes. I went in to see Dr. Desai that Monday, and I was admitted that Friday. I had been down pretty much every day to get blood work and some bone marrow biopsies, and started the treatment on Friday.

Andrew Schorr:            

Right. And, you were ultimately in the hospital for about five weeks.

Jerry Brennan:             

Yes, five weeks exactly. I think the original idea was three weeks. They added me to a trial program, which added a second dose of chemo, which added a week, and my blood counts were slow to rebound, so it kept me in for five weeks. 

Andrew Schorr:            

We should mention that Jerry’s treatment was five years ago, so things have been changing. Dr. Desai, related to a clinical trial, that clinical trial may well have been what helped Jerry so much, right?

Dr. Desai:                     

Exactly. So, the clinical trials we have with leukemia—they’re designed—things have changed over the course of time, but the exact idea is to try to improve upon the outcomes from the standard of care, and adding newer drugs or other strategies to their management in order to get into a better relation, putting more people into remission, so absolutely, clinical trials are very important, and I’m sure it had a great role in putting Jerry right into remission, and now, staying in it for five years

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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