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Video
What are important conversations that patients with acute myeloid leukemia need to have with their doctors?
Posted by
HealthTree • July 26, 2022
Description
Find out the important conversations to have with your AML doctor in this video.
On this video

Joseph Jurcic, MD, Specialist
Columbia University Medical Center
Transcript
What are important conversations that patients with AML need to have with their doctors? So I think one of the key conversations is getting back to this issue of risk stratification and what are the chromosome changes, what are the genetic changes, because this is the thing that's going to help determine what the best treatment is for the patient. So that would be the first thing. It's not a simple question of what type of leukemia I have, but what are the individual genetic changes that are occurring. Based on this, there's a relatively complicated classification system where patients can be stratified into good risk disease, intermediate risk disease, or adverse risk disease. That's important because it can direct us towards what therapy is going to be the best strategy to offer the best chance of a cure. And so that's why this becomes so important. Also, there can be certain gene mutations where we have targeted therapies. For instance, there's a genetic abnormality called FLIT3. We now have a couple oral medications that we can give in conjunction with chemotherapy to treat this abnormality. Similarly, there are mutations in genes called IDH1 and IDH2. We have oral medicines that can cover these abnormalities as well. And so it's not just a matter of what's my prognosis, but how does this lead to a better treatment for me? And so that's why this first part of the conversation is so important. And then I would also ask the doctor, do you have access to any promising clinical trials? We know that things have gotten better over the years for AML patients, and survival has improved. And in fact, in the past five years, there have been nine new medications that have been licensed for AML, which again makes the treatment more complicated, but also offers new and better possibilities. So we get these new medicines by clinical trials, and there may be promising new studies that that patient may have access to if their physician is participating in these trials. So that's an important conversation. And then after all this genetic information is known, we would also need to talk about what strategy is necessary to stay in remission. And this can generally fall into a strategy where the patient's going to be receiving more intensive chemotherapy or kind of long-term treatment with less intensive drugs or a stem cell or bone marrow transplant. And so that conversation is also very important. So I think what's important, it is very important to understand the disease. So we want to learn as much as possible about the disease itself and what can we use. What are the weapons, so to speak, in our arsenal that we can use to fight this disease? So this is where all the molecular testing, cytogenetic testing, all of that, where that comes in. I think it's also really important for patients to know that this is the time when you, if you're diagnosed with this disease, you need to mobilize everyone you know. You need to mobilize your entire family, all your friends, because you're going to need help. It's very hard to get through this without your support system. And often initially when patients are diagnosed, understandably, they're trying to process. They don't necessarily want to talk about it to everybody. And sometimes they don't even want to talk about it to their close family members because they don't want to upset them and they feel that they can do this on their own. And it's very, very hard to do it on your own. You really need the support. So when you're in the hospital, you need the support of your loved ones to be there with you, to sit there with you, to bring you the things you need. And when you get out of the hospital, you need it even more. You need someone to help you at home. You need someone to bring you to your appointments. You probably will not be able to go back to work for a long time. And so we need to talk about FMLA. We need to talk about all of these important things. And this is again the reason why you need the support of everybody you know and are willing to help you. I think it's really, really important to mobilize everybody to help. It's a hard question. There are a lot, I think anytime someone is newly diagnosed with AML, there are probably a lot of scary thoughts and hard conversations to have. But I think of the most important conversations, the conversations should include what are the treatment options, what are the chances of success, what are the risks, and then conversations about the overall prognosis. And those are hard questions for most doctors to field. And I wish we could do a better job of predicting prognosis. But I think the treatment goal can be sort of defined as a binary thing. Are we treating with the intent to cure the leukemia, meaning it never comes back and we can stop treatment, or is the goal to get the leukemia into remission, meaning we control it for as long as possible, but acknowledging that at some point the leukemia will come back. And I think in terms of prognosis, that's the main distinction to make. Are we treating with the intent to cure or are we treating with the intent to prolong life? And so I think conversations about that part as well as the specific treatment are really the most important to have early on.

