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I've Just Been Diagnosed With AML: What Comes Next?

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Published on August 28, 2020

What Happens Next After an Acute Myeloid Leukemia Diagnosis?

"Often times its an incredibly overwhelming time for the patient and family because there's just so much happening so fast," explains Dr. Courtney D. DiNardo from MD Anderson. She joins Patient Power co-founder Andrew Schorr to discuss what a patient and their family can expect following an acute myeloid leukemia diagnosis. Dr. DiNardo emphasizes that while there are phenomenal community oncologists who are great advocates for their patients It is important to include an AML specialist to your medical team. Watch to hear the full conversation.


Transcript | I've Just Been Diagnosed With AML: What Comes Next?

Andrew Schorr:
Hello and welcome to Patient Power, I'm Andrew Schorr. Joining me from MD Anderson Cancer Center in Houston is Dr. Courtney DiNardo, who is a researcher and an expert in AML, acute myelogenous leukemia. Dr. DiNardo, when AML happens, somebody may find themselves at the doctor's office and sent immediately to the hospital, where they come to the emergency room. How does it show up?

Dr. DiNardo:
AML is one of those cancers that is often times rather dramatic at presentation. Not always, but just to kind of set the stage I suppose. So, an acute leukemia is where inside your bone marrow, those cells that are making your immune system, your white cells kind of get stuck in this form, these blasts that then start to kind of increase and increase, fill up the bone marrow and prevent normal immune system function from happening.

So, patients with an acute leukemia often have immuno-deficiency, sometimes people are presenting with an infection that just didn't get better with antibiotics then their blood work is found to be dramatically abnormal. The other things your bone marrow makes, which are affected, is your hemoglobin, which circulates your oxygen, gives you energy. So many people come in profoundly anemic, very fatigued and then platelets, the clotting factors, are affected. Often times your platelets are quite low so people can notice bleeding, maybe when you're brushing your teeth and mucosal bleeding or these little red spots, little micro bruises around the body.

AML is often, it's kind of one of those medical emergencies. It's one of those treatments that often times patients present with a high white count, which is not really a stable thing. Your white cells are big and sticky and they can sludge in your vessels and cause lots of problems. So, typically this is something that you present to your doctor or your urgent care and they see these really abnormal counts and they send you immediately to an emergency room for an initiation of treatment.

I remember, when I was a fellow and I had a brand new patient very similar to this, a very high white count. Really medically kind of scary to be taken care of because these patients often times can get sick really quickly. We did a bone marrow, within a couple of hours, to identify whether this was an acute myeloid leukemia and an acute lymphoid to figure out the best treatment strategy. We do an echocardiogram to make sure the heart function is okay in people who are getting a certain class of chemotherapy agents, called anthracyclines. We do a PICC line which is one of those long kinds of indwelling peripheral IVs because we're doing multiple blood checks throughout the day and transfusions are needed to help support the blood counts because the bone marrows not working.

Often times people need one or two other procedures based on the symptoms that they're presenting with, whether it's a pneumonia and need a CAT scan, various different infections are often times... So, we understand the necessity of getting these things done urgently but often times it's an incredibly overwhelming time for the patient and family because there's just so much happening so fast. It's different than solid tumors where maybe you feel a lump or you have a scan but then you have a couple weeks before you see the physician who then sets you up for a surgery or therapy so there's not that processing time. So it can be incredibly overwhelming.

What can help an AML patient to make informative decisions

Andrew Schorr:
So, this is what I wanted to ask you, advice for our audience because you are an AML specialist. They could have gone to an emergency room anywhere. There's been changes in the treatments of AML. But these decisions need to be made pretty quickly. What can the family do or the patient do to advocate for themselves so that this science is brought to bear for them?

Dr. DiNardo:
Two things I'll say for that. One is that I've just been going through and talking all about the medical emergency and initiation of immediate therapy. Many patients might not need that dramatic initiation. So if the white count is low, at presentation, there's not that immediacy of treatment. Sometimes we do have time and patients can be managed as an outpatient initially and have time to go seek out a second opinion. But I think the most important thing, the second thing that's really important is that as you mention there is so many new therapies, the understanding of what makes a leukemia has changed so much in the past like 10 to 20 years.

AML is not really a single disease. You don't see AML when you treat it this way. There's like 40 different types of AML, depending on the specific genetics of that disease and there are targeted therapies. If someone has a FLT3 mutation, you need to add a FLT3 inhibitor. If they have IDH mutations, there are IDH inhibitors. There's kind of therapies that we have that are based on different characteristics. So, because leukemia is a rare disease, many of my community oncologist friends only treat a few leukemia patients a year. They are phenomenal patient physicians that advocate for their patients but I would say if you are a patient, what would be a good idea is to seek out, have that physician kind of work with one of the leaders in the field, the experts... one of the major academic settings, just to say these are the specifics of my patient.

This is the molecular characteristics; this is what we have. Just to help make sure that you, the patient, is getting the optimal therapy based on the specifics of your leukemia, given how many changes there have been made. And I work so closely together with many different community oncologists around the region and the world, to just help make sure for people that are not able to come to MD Anderson for example, that they're still getting the most optimal care.

Andrew Schorr:
So, for our viewers and you are now watching this and your loved one has been diagnosed with AML and you've had that rush to the emergency room or your white count is really low or there's been bleeding in the gums or all these things Dr. DiNardo spoke about and it's an AML diagnosis, have your doctor, if they're not an AML specialist check in with one. Typically, an academic medical center, like MD Anderson, and say hey this is what's going on, what would you recommend.

Okay. All right. It can make a real difference today because there are more answers than ever before. All right. Dr. Courtney DiNardo, thank you for all you do and for really empowering families affected by AML so they get what's right for them.

Dr. DiNardo:
Absolutely. Thank you for the opportunity.

Andrew Schorr:
Sure. Andrew Schorr with Patient Power. Remember, knowledge and self-advocacy or for a loved one can be the best medicine of all.


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