ACUTE MYELOID LEUKEMIA (AML) Archives

Acute myeloid leukemia (AML) is a fast-growing form of cancer of the blood and bone marrow. AML is the most common type of acute leukemia and occurs when the bone marrow begins to make blasts, cells that have not yet completely matured.

Treatment Approaches in AML: Key Testing for Personalized Care

Treatment Approaches in AML: Key Testing for Personalized Care from Patient Empowerment Network on Vimeo.

When it comes to Acute Myeloid Leukemia (AML), genetic testing (or biomarker testing) is essential in helping to determine the best treatment approach for YOU. In this program, AML expert, Dr. Naval Daver reviews key decision-making factors, current AML treatments and emerging research for patients with AML.

Dr. Naval Daver is an Associate Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. More about Dr. Daver here.

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Transcript:

Katherine:                   

Welcome to INSIST! AML. A program focused on empowering patients to insist on better care. Today we’ll discuss the latest advances in AML, including the role of genetic testing and how this may affect treatment options. I’m Katherine Banwell, your host for today’s program. And joining me is Dr. Naval Daver. Welcome, Dr. Daver. Thank you so much for being here. Would you introduce yourself?

Dr. Daver:                    

Hello. Yeah. Thank you very much, Katherine. It’s a pleasure to join this discussion and meeting. I’m the Associate Professor in the Department of Leukemia at the MD Anderson Cancer Center. I focus on the treatment of acute myeloid leukemia and MDS, including the development of a number of clinical trials that are using targeted therapies and immune therapies for this disease. And with the great and dramatic progress, we’re seeing in acute myeloid leukemia; I think it is now more important than ever for patients to be aware of the options and be able to select the most appropriate therapy with their physicians.

Katherine:                   

Before we get into the discussion about AML, a reminder that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team. Dr. Daver, I know the field of AML research is advancing rapidly. Would you give us an overview of the current treatment types in AML?

Dr. Daver:                    

There has been dramatic progress in the treatment of acute myeloid leukemia, especially in the last three years. We’ve had eight new drugs approved for the treatment of acute myeloid leukemia. The most progress I think that has happened so far is in the identification of particular molecular mutations and targeting those mutations with targeted therapies.

The mutations that are most important right now and have target options for FLT3 mutations, F-L-T-3, and the drugs that have been USDA-approved for this are an agent called Midostaurin, which is a first-generation FLT3 inhibitor and combination chemotherapy.

And then, more recently, another agent called Gilteritinib, as a single agent in relapse refractory FLT3 AML. The other mutational group that is also very important, and therapeutically needs to be checked, is IDHN1 and IDH2. And there are now two IDH inhibitors, IDH1 inhibitor, Ivosidenib, and IDH2 inhibitor, Enasidenib, both of which have been approved by the United States FDA for relapse patients with IDH1, IDH2 mutations. So, I think it’s really critical now to check for particular molecular mutations and to appropriately add the particular targeted therapy or select the particular targeted therapy in patients who have the mutation.

The other major area of advancement, and probably, if not the most important breakthrough that has happened, is the development of a new drug called Venetoclax. This is a BCL2 inhibitor. It’s new in AML, but in fact, it has been used for many years in CLL, which is chronic lymphocytic leukemia.

And this drug, in combination with Azacitidine in the frontline setting in older patients with AML who are not good candidates for intensive induction, has shown very high response rates, almost 70 percent CR-CRi, which is more than double of the 20 to 25 percent we were getting with Azacitidine alone.

And it’s now been approved by the US FDA and, in my opinion, and many of the experts really is the new standard of care and should be used in all older patients who are not good candidates for intensive chemotherapy given both the very high response rates, as well as now mature data showing significantly improved overall survival and a good tolerability.

So, there are many other breakthroughs. But I think these targeted agents, and Venetoclax, probably are the most impactful today.

And we’re focusing a number of new combinations building around this.  

Katherine:                   

What are common mutations in AML?

Dr. Daver:                    

Yeah. So, the most common mutation in AML is F-L-T-3, FLT3 mutation. This is both prognostically important mutation, presence of an FLT3 in a newly diagnosed AML, has been shown in many large publications by the German Cooperative Group, British Cooperative Group, our group, and others, is associated with an inferior survival.

Also, now, on top of that, it is also a therapeutically important mutation in addition to having negative prognostic value because the addition of FLT3 inhibitors seems to dilute, to a large extent, the negative prognostic value.

So, we believe that if we can identify FLT3 mutations at FLT3 inhibitors, we can definitely improve the outcome of those patients. The second most common is what we call NPM1 mutation, and that tends to occur with FLT3. About 55 percent of patients with an FLT3 mutation will have a coopering NPM1.

NPM1 is very interesting. With NPM1 mutation is present on it’s own without a FLT3, it’s actually associated with favorable outcome. It’s a favorable prognostic marker. However, if NPM1 is present with a FLT3, and especially if the FLT3 has a high quantity, high allelic load, then the NPM1 loses its favorable impact. So, now we’re kind of moving beyond just; do you have one mutation or not, which is what we thought 10 years ago, to; well, yes, you have this mutation, but what about the core-occurring mutation and even beyond. What about the burden, or what we call the variant allele frequency of that mutation?

So, for good or bad and I think it’s good in the end because it’s going to improve the patient outcomes, that we are getting more, more in-depth and there’s no longer quote, unquote, AML.

So, there’s a lot more granularity and analysis that is required even before starting treatment. And this is the thing that, in the community, we’re educating the doctors a lot, is that it’s okay to wait four to six days, especially if the patient does not have a very proliferative leukemia, to get the important bloodwork to identify the appropriate molecular and chromosome group.

So, that we can select the right treatment which will improve outcome rather than just rushing into standard treatment and missing a particular molecular chromosome group.

Katherine:                   

True. It might not be – the genetic testing might not be right for everyone.

Dr. Daver:                    

Right. Right.

Katherine:                   

What is genetic testing in AML?

Dr. Daver:                    

So, genetic testing in AML is basically what we call molecular profiling.

So, it’s looking at the presence of particular molecular mutations. For example, at MD Anderson, we do what we call 81 gene panel. So, this looks at 81 different genes for mutations in the bone marrow of newly diagnosed acute myeloid leukemia. Now, how did we come up with 81 genes? So, this was actually done by literature analysis and review of previously published preclinical and translational studies, and we basically selected all mutations that had been shown to occur in two percent or more of thousands of AML patients. And we found 81 such mutations. So, that any mutation that had a two percent or higher frequency in known published or public databases was included.

And that’s how we’re able to analyze for the mutation. So, it’s still possible that there may be some very rare mutations that are present, and those may be important for research. But they don’t change our treatment decision today. And so that’s what we call genetic profiling. Some people call it molecular mutation analysis. Some people call it next-generation sequencing.

But basically, this is looking for mutations in particular genes that are known to occur in AML. Now of those 81 genes; and some people do a 100 gene panel, some do 50, so those are variables; but among those, there are four or five that are most important: the FLT3, as we discussed, where we can use FLT3 inhibitors; IDH1 and two, because we can use IDH1 and IDH2 inhibitors; TP53 is a very important mutation because it has very high risk and adverse prognosis.

And there are now new drugs coming that may be very effective in TP53. So, we are checking for that. Those drugs are in trials, but the trials are showing very promising data and could be a great option if a patient is known to have a TP53.

Those drugs are Magrolimab, CD47 antibody, and APR-246. So, these are the four most important therapeutic mutations.

There are also some mutations that have prognostic value even though we cannot target them. These include mutations like RUNX1, DNMP3A, ASXL1.

One does not need to know the list. But the point is that these mutations may help determine whether a patient falls into intermediate-risk group or high-risk group, which then impacts the decision as to whether we need a stem cell transplant or not. So, it really is important to get this molecular profiling. It’s actually available in the United States commercially. And any clinic or hospital is able to actually order it. And insurance will cover it in 100 percent of the cases.

Katherine:                   

Wow, that’s great. What should – when should patients be tested, and how is testing done?

Dr. Daver:                   

Yeah. So, the basic testing for any suspected new acute leukemia is to get a bone marrow biopsy. That has to be done.

That should be done very quickly because all of the information that will be generated to make the treatment decision will come off the bone marrow biopsy.

Katherine:

What about retesting, Dr. Daver? Is that necessary?

Dr. Daver:                    

Yeah. So, retesting is necessary in – not for everything, I think.

But let’s say someone had treatment induction and relapsed a year later. So, we would definitely retest: 1) to confirm with the bone marrow’s relapsed AML, get the blast percentage because we need that before restarting treatment, so we know what was the starting point to know how the patients doing after treatment if he’s responding. 2) Molecular testing, for sure, should be repeated. We usually repeat the molecular testing such as FLT3, IDH1, IDH2, because there are drugs that can target these mutations in a relapse.

And more interestingly, we actually have published, and other groups have also published, that there are some patients who may not have those mutations at baseline but may actually acquire or have detectible mutations at relapse. So, if you don’t have FLT3 at baseline, your physician may assume that the FLT3 is not there, not do mutational testing. But in fact, that may not be true. So, it is important to retest about 15 percent, one five percent, in our publications can acquire a detectible FLT3. Which is critical because this could then change your treatment.

IDH1 and two are rarely lost or acquired, but we have seen a few five percent or so cases of that. So, it’s still better to check for that. And then TP53 we check for because now we have these new research clinical trials, phase one, two, that are showing some very encouraging activity in TP53. So, these are probably the main things to retest for.

There’s also some new clinical data emerging with a new drug called menin inhibitor that targets a particular chromosome abnormality, MLL rearrangement. This is again in a phase one setting, so the data may not be widely disseminated. But we’re seeing some very encouraging activity with menin inhibitors.  

And so, we are 100 percent checking for the MLL rearrangement chromosome, which can be done on FISH, or routine chromosome.

And if that is there then trying to get on one of the menin inhibitor trials, they’re opening about 25, 30 centers with different menin inhibitors, would be a very, very good option because we think these will be the next molecular or chromosome-targeted breakthrough in AML.

Katherine:                   

We’ve been discussing how molecular testing results lead to targeted therapy. How do targeted therapies work?

Dr. Daver:   

Targeted therapy means that we’re targeting a particular mutation. Now we may be targeting in different ways. So, some of the drugs, like FLT3 inhibitors, these are the most established and oldest targeted therapies in acute myeloid leukemia, been in development for about 18 to 20 years, work by blocking a particular receptor, the FLT3 receptor.

That receptor, when blocked, removes the growth and proliferation signal to the leukemia blast. And that receptor is much more preferentially and heavily expressed on the surface of the acute myeloid leukemia cell as compared to the normal, healthy myeloid or lymphoid cell. So, basically, we are shutting down the growth signals, resulting in eventual death of the leukemia blast and that’s how FLT3 inhibitors work. So, it’s a more of a direct activity resulting in cell death over a few days and quick action. On the other hand, we have what also is called targeted therapies but act very differently. These are IDH1, IDH2 inhibitors.

So, when you use an IDH1 or two inhibitor, they do go to the IDH1 and two receptor on the surface of the acute myeloid leukemia cell, but actually, they don’t result in the death of the cell. They actually cause what we call differentiation.

So, they promote that immature abnormal leukemia cell to undergo maturation and become a normal myeloid cell, which, over time, will die because normal cells have a finite lifespan, and they will die. As compared to leukemia blasts, which can live on much, much, much longer. And so, this process is called differentiation. So, FLT3 inhibitor, very different direct cell death. IDH inhibitor, very different from most maturation differentiation of immature cells to mature cells and takes longer. So, this is important clinically because with FLT3 inhibitors. We see responses quickly, one to two months. IDH inhibitors it takes longer, three to five months.

And so, targeted therapy is not one and all the same. You may be targeting a particular receptor, but the modality of action downstream may be very different.

Katherine:                   

What’s the treatment regimen for targeted therapies, and how long are patients treated with these types of therapies?

Dr. Daver:   

Yeah. I mean, that’s an area of big research. There’s no one field of answer yet for – and I don’t think there will be.

Of course, eventually. So, it really depends on; 1) What setting we’re using it in? Newly diagnosed, relapsed AML. In relapsed AML, with most targeted therapies, whether you’re use is a single agent, like FLT3, IDH1, IDH2, TP53, MLL-targeted agents, the goal is to get a patient to transplant.

Transplant, meaning allogeneic stem cell transplant using a sibling donor or a match-generated donor.

Because in relapsed AML without transplant, irrespective of the genetics and chromosomes, all relapsed AML have very poor outcome. The survival is only 20 percent or less without transplant.

If we can get a patient to transplant, we do have a good chance of long-term survival. So, the goal is transplant. And we usually use a targeted therapy for short, finite period, two to four months, to get a remission, get to transplant, hope that will cure the disease.

In front line, it’s quite different. We’re using induction chemotherapy with FLT3 inhibitors. In some research trials, we’re adding IDH1 and two inhibitors. We’re using Venetoclax, which is a kind of a targeted therapy.

Also, the BCL2 in combination with hypomethylating agents. And here, the targeted therapy is often used indefinitely. At least for one or two years. But in our approach and our guidelines, we continue the FLT3 inhibitor, IDH1 or two inhibitor or Venetoclax, as long as patient is tolerating it and does not have disease progression.

So, these are being used kind of similar to CML, chronic myeloid leukemia, where we use tyrosine kinase inhibitors or myelofibrosis, where you use jak inhibitors. They don’t cure the disease, but they continue to control the disease as long as you take them.

And in the end, we call this functional cure.

If somebody takes a FLT3 inhibitor and lives 20-plus years, semantically, he was never a cure, like an infection gets cured. But functionally, to me, he lived a normal life, and he was cured.

Dr. Daver:                    

And so, that’s how we’re using those inhibitors in the frontline setting different from the relapse setting.

Katherine:                   

How do these newer therapies differ from more traditional chemotherapy?

Dr. Daver:   

Yeah. Dramatically different. Completely different from traditional chemotherapy. So, to put it in more layman terms, traditional chemotherapy is like a nuclear bomb. Right? You – There’s a lot of things there in the marrow. You don’t know what’s good. You don’t know what’s bad. Blow it all up and hope that, when the new plants grow, the good ones grow and the bad ones were kill. And, in fact, this is true, to a large extent. Traditional chemotherapy, not to put it down, is actually been curative in a large population of AML for the last three decades. Our group and British MRC and Polish, and many groups have published up to 50 to 65 percent cure rates, especially in younger patients, below 65, with traditional chemotherapy.

So, this is not bad. People always get depressed with leukemia. But if you look at solid tumors, I mean, they have never achieved cure rates above 10 to 15 percent till the last decade or so. So, we were still getting 60, 65 percent cure rate. Two out of three.

So, traditional chemotherapy has done great work. But it was that approach. Just nuclear explosion. Take it all out, and hope good stuff comes.

Now the targeted therapy’s like a sniper. It’s actually looking for the particular leukemia cells and trying to take them out one by one with minimum collateral damage to your healthy bone marrow cells, which are important to produce red cells, platelets, white cells. So, guess what? There’s much less toxicity. You don’t see the hair loss with these agents. You don’t see the mouth sores and mucositis. GI complications are much less; infection risk is usually less.

Not to say they don’t have their own side effects. Unfortunately, even the targeted therapies have unique side effects. But, in general, those side effects are much less impactful in a negative quality-of-life way and much more manageable and tolerable. So – And, in the end of the day, they’re actually often more effective.

So, for example, with the FLT3 inhibitor, the study that was done with Gilterinib and Quizartinib, two very potent FLT3 inhibitors, was looking at a single-agent FLT3 inhibitor versus three-drug, high-intensity combination nuclear chemotherapy. And if I told this to any layperson, they would say, oh my God, that’s completely unfair comparison. You’re going to use three drugs, IV chemo, strong chemo, and compare it to one oral targeted pill. There’s no way the pill can be even equal, leave apart, win.

But guess what? The targeted therapy actually won. It not only was equal. It doubled the response rates, it reduced the toxicities and early mortality and led to improved overall survival, the gold standard. So, this shows that even though they are sniper, they can actually be much more effective with less toxicity. So, it’s a win-win. Better, tolerable, and more effective. Now the next stage within then decade, we think, it’s not one or the either, it’s really a combination. So, we’re reducing the dose of chemotherapy. So, we’re not making it as nuclear as it was. It’s still intense. But much more tolerable. And we’re compensating for that by adding the targeted therapy.

And, in fact, in the end, we expect much higher responses and survival with much better tolerability and lower early mortality. But I don’t think we’re at a stage where traditional chemotherapy is gone. Maybe 10, 12 years from now, as many more developments come, we’ll get there. But I think it still has a role, especially in the younger AML patients.

Katherine:                   

Dr. Daver, you mentioned the – some common side effects of chemotherapy. What about some of the newer therapies? Do they also have side effects?

Dr. Daver:                    

Yeah. Absolutely. I mean, every therapy we have in leukemia has a side effect. There’s no drug I can mention that is just devoid of them. Of course, some are less, and some are more. So, to be more specific, I think, for example, IDH1, IDH2 inhibitors, these are probably one of the most tolerable treatments we have in all of leukemia treatment. In general, they don’t cause much myelosuppression. Meaning, drop in blood counts. They don’t cause hair loss. They don’t cause mouth sores and GI upset in majority of people.

They’re always some patients who may. But what they can cause are two things: Number one, is they can cause what we call the differentiation syndrome.

And differentiation syndrome means the blasts that are going from the immature state to the mature state; in that process, they can cause an inflammatory reaction. And this can manifest with fever and cough, and chest pain, hypoxia. It’s something that’s actually very, very easily treatable, giving steroids for three or four days will take care of it. But many times, people were not aware of this. And so, often, we saw this was missed in the community.

So, that’s one specific example. With the FLT3 inhibitors, sometimes we see that they can cause more prolonged drop in blood counts, and count recovery can be delayed. Or we can sometimes see that they may cause some cardiac signals; increase in cardiac intervals. Again, something that, with close monitoring, bloodwork, keeping the electrolytes normal, can be managed. But I don’t want to go through the whole list. But the point is that there are specific and unique side effects that can be seen with particular targeted therapies.

And again, this is a learning curve where we have done these trials for eight to 10 years. So, we became familiar. But when the drug is approved, it’s a – it’s kind of a night-and-day situation in the community. They didn’t have the drug yesterday. They have it today. But there may not be any learning curve there. So, I think that’s where a lot of education and interaction with our colleagues is now coming into play.

But also, patients, I think, need to take this a little bit into their own hands, and also read about the label, read about the drug. So that, if they have side effects, if they actually ask their doctor and say, do you think this could be differentiation? I read about it. Yeah, most people will at least think about it. And I think this could be helpful to make sure that things are not missed. So, we do want patients to be more interactive and kind of  take things into their own hand. Because there are so many new drugs out there that their doctors may not be fully familiar yet.

Katherine:                   

Well, let’s talk about patient advocacy. What are some of the key tests that patients should ask for after they’ve been diagnosed?

Dr. Daver:                    

Yeah. Absolutely. So, I think the key things that patients should want to get the information is: 1) Knowing the bone marrow blasts.

I mean, that’s really basic. Just knowing what leukemia it is. What are the blast percentage? 2) Is, I think, chromosome analysis is very critical to get that information and to make sure we’re not missing acute promyelocytic leukemia, or core-binding factor leukemia, which have different treatments and very favorable outcomes, and would never, in general, never require a allogenic transplant. At least in majority of cases.

And 3), which is the one where we still see that it may sometimes not be available or be missed, is molecular testing.

I think it’s very critical to request molecular testing. And among molecular testing, especially FLT3, maybe IDH1 and IDH2, and TP53.

So, I think these are the most important data sets. Cytogenetics, key molecular mutations, bone marrow blasts, and confirmation of the type of leukemia before we embark on any treatment.

Katherine:                   

How can patients feel confident, do you think, in speaking up, and becoming a partner in their care?

Dr. Daver:   

Yeah. I mean, this is always a touchy area because physicians may feel that this is kind of encroaching on their territory or telling them what to do. And this is always a major challenge. I think when you go for the clinic visits, just to have a list of your questions written down and having them prepared and prioritizing them.

I always say, have your top-three questions ready.

We’ll try to do the others. But we’ll do the top three. And I think, when you have a new diagnosis of AML, the top three should be: what is the type of leukemia I have, and what are the bone marrow blasts? Number one. Do we have any chromosome and molecular information? Number two. And number three: Are there any specific treatments for my specific AML based on that chromosome molecular information? Or do we need additional information, and can we wait for that safely? I think these are the three very reasonable questions which, I think again, most leukemia experts will automatically be discussing this.

But, I think, for a patient, I think that’s important information to make sure they get before proceeding. If there’s time, the fourth question will be: Is – Are – Do we have a choice between high intensity, low intensity? And if we do, what are the pros and cons? In some cases, there may be a choice. In some cases, it may very clear that high intensity is the way to go, or low intensity is the way to go. But still, I think it’s often good to discuss that with your physician.

So, these are probably the four things one can bring up reasonably without the physician feeling that this is going to take forever, and I cannot discuss this. And then a lot of the AML treatment happens in-patient. So, there will be a lot of time for additional discussion. I tell my patients that, look, once we get the basics and the treatment decided, which is what we do in clinic, then you’ll be in the hospital most of the time. If it’s induction chemo for four weeks. Even if it’s Venetoclax, often they’re admitted for five to seven days, they will have more time then to discuss with the physician, the nurses, on a daily basis, and get more of the nitty-gritty.

Things like diet, exercise, lifestyle. Can I meet friends? I think you should not try to bring those things up right in the first visit. Because that may dilute the key information. So, I think staggering it, keeping in mind that many physicians are extremely busy, and getting that information in pieces over time, is probably productive for you and for the doctor.

Katherine:                   

With Covid-19 affecting all our lives right now, what should AML patients be considering at this time?

Dr. Daver:   

There’s a lot of guidelines on general approaches to managing things in COVID. And all of those guidelines heavily center, as we would think intuitively, on precautions.

Hand washing, minimizing contact, avoiding crowded places, trying to get treatment, potentially locally, if there are equivalent options available. We have not changed any of our frontline – we discuss this a lot every week in our faculty meeting.

This is discussed especially, as you know, because Houston currently is a major center affected heavily by COVID, and so, we have discussed whether we should move in a universal way to lower-intensity therapy for all patients. And we haven’t. And there’s pros and cons to that. When we do induction chemotherapy higher intensity, we, in fact, admit our patients for 28 days.

o, actually, even though it’s high intensity, the patient is more protected because they are in the room. Isolation rooms, sometimes. And they have minimum contact with outsiders. So, with COVID, actually, there’s very little opportunities or chances for them to get it. But the chemo is intensive. So, if they did get COVID, then it could be much more difficult or risky, or even fatal. On the other hand, low-intensity therapy is good because it’s low intensity and the risk of COVID, the frequency may or may not be changed; we don’t know. But the intensity we think could be lower because the immune system has not been suppressed.

However, low-intensity therapy very often is given outpatient. And so, then you have the benefit of lower intensity but the risk that you are going to be driving back and forth to the medical center, getting bloodwork, exposed to people in the waiting room, this and that. So, what we decided, after a lot of discussion among a big leukemia expert faculty in our group, was that we will still decide the optimum treatment based on the leukemia chromosome, molecular, age, fitness of the patient like we’ve always done.

And then we just have to try to encourage the patients to do as much precautions as possible. The other thing with the COVID, I think is very important is that, even though you may not be able to travel to your academic institution nearby because it’s harder to travel now, it’s still a good idea to try to get a consultation. We are doing a number of phone or email consultation, either directly with the patient, and even more frequently with their community doctor.

So, I get every day, four or five emails from academic even, and community physicians just saying, I have this patient, new AML, relapsed AML, whatever the case may be, here’s the mutation chromosome information, and I was going to do this. But the patient asked that I run this by one of my top academic colleagues. So, maybe MD Anderson. Some, I’m sure, are talking to Sloan. Some are, I know, are talking to Dana Farber. Cornell, whatever it may be. So, you can always request that. And maybe 100 percent of physicians may or may not do that.

And we’re seeing this collaboration actually. One of the positive things of COVID is we’re seeing these collaborations becoming better and better over time.

Katherine:                   

Oh, excellent. If a patient does need to go to clinic for a visit, what safety measures are in place?

Dr. Daver:   

Yeah. So, there’s a few things we’re doing in clinic is; one is we have staggered our clinics. So, instead of having everybody come at 9:00 or 10:00 a.m., and having 30 people in the waiting room, we really have more time slots.

And we ask people to come three of them at a time in the waiting room. We’re minimizing it three to five patients at most

Of course, there’s a lot of sanitization, dispensation units everywhere, encouraged to use those. The other important thing which, unfortunately, is a double-edged sword, is that we have had to minimize the number of friends, relatives, spouses, that can come with patients.

In fact, the policy at MD Anderson, like most cancer centers, is that nobody is allowed with the patient unless the patient is physically really impaired, as in wheelchair-bound or cannot go to the restroom. Of course, there are exceptions. But generally, I know, and I actually benefit a lot from it too, when patients have their family because the emotional support also helps our medical team to get information across. The patient may be sometimes stressed and forget things. So, what we’re doing more and more is doing phone calls.

So, what I would recommend is, as soon as doctor comes in, say, hey, doctor, can I call my daughter or my wife? I want her to listen to everything. Perfect. I don’t mind. There’s a speaker on. Good.

So, that helps with communication. But those are the big changes we have done from the clinic perspective. Still seems to be working relatively smoothly. We’re still seeing almost about the same number of patients in clinic that we were before COVID. And we have, fortunately, and knock on wood, not seen big numbers of leukemia patients with COVID. And we think the primary reason is because leukemia patients are just very cautious from the beginning. Even before COVID, they knew the risks, and we want them to continue that as much as possible.  

Katherine:

Dr. Daver, thank you so much for joining us today.

Dr. Daver:   

Thank you very much. Always a pleasure.

Katherine:

And thank you to all of our partners.

To learn more about AML and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell – Thank you, Dr. Daver.

On Recovering After a Stem Cell Transplant

As a transplant survivor and peer volunteer, I have met with over 150 transplant patients. The most common question I hear concerns what recovery looks like. People want to know about timelines, precautions, complications, medications, benchmarks, and much more.

I can only answer these questions from my experience, and no two outcomes are the same. But I’ve read and heard enough other stories to know where mine is typical or exceptional, so I can also place my story in a broader context.

In June of 2016, I was diagnosed with acute myeloid leukemia. I underwent induction chemotherapy and achieved a temporary remission. In October of 2016, I received a double cord blood stem cell transplant. I fully recovered and have returned to all my prior activities, so mine is a very positive story. Along the way, however, there were several memorable challenges.

Prelude to a transplant

My initial treatment required a five-and-a-half-week hospital stay. It was one week for the traditional “7+3” chemotherapy regimen, and another four and a half weeks to monitor and treat the inevitable infections that followed in the wake of chemotherapy-induced immunosuppression.

My diagnosis was routine for my providers but shocking for me. I was asymptomatic and feeling perfectly healthy at my annual physical. But low white blood cell counts triggered a bone marrow biopsy that established my diagnosis. I was hospitalized the next day and started chemotherapy the day after that. My treatment was underway before I even understood my disease and its bleak prognosis.

When they told me to expect a 5-6-week hospital stay, I was dumbfounded. I quickly realized that I needed ways to cope with how my world had suddenly become very small and quite precarious. Over the ensuing weeks, I developed and honed several crucial strategies.

First, I relied upon mindfulness, meditation, and yoga. It helped me banish thoughts about the past and anxieties about the future, and to non-judgmentally accept and live in each moment as it unfolded.

Second, I did as much physical exercise as my circumstances would allow. My routines included stretching, isometric exercises, extensive hall walking, squats, lunges and pushups. I did it mindfully, and these routines structured my days, increased my energy, and lifted my spirits.

Third, I was a pro-active patient. I cultivated good communication with my doctors and nurses. I asked lots of questions about my treatment and became a collaborator in decisions about medications, dosing, and deciphering and treating the many infections and side effects that came my way.

Fourth, I maintained my robust sense of humor. Sharing jokes and witty banter with my medical providers broke the ice, resolved the tension, and humanized our consults. It also gave friends and family a way to relate to me as the person I’d always been rather than the patient I’d recently become.

Fifth, I relied on a supportive belief system. For some, that’s religion. For me, it was a secular worldview based on my social science background. It encouraged me to learn about my condition and fostered a practical, problem-solving orientation to all the challenges it posed.

Finally, I wrote my story from the very first week. I sent detailed reports about my status and reflections as a cancer patient to a large group of email correspondents. Writing for others forced me to understand my journey so I could articulate it for them. This writing became a psychic survival mechanism (and a subsequent memoir).

When the time for transplant arrived, I packed a bag, grabbed my laptop, and took these coping strategies with me. As doctors cured my body, these strategies sustained me throughout everything that was to come.

The Transplant and Hospitalization

Like many patients, I was admitted to my transplant hospital one week before the actual procedure (day -7). I underwent conditioning chemotherapy and full body radiation. Upon my transplant (day 0), I was told to expect another three to five weeks in the hospital before I could be safely discharged.

Days 1-7 were uneventful except for some moderate nausea due my prior chemotherapy and radiation. I got some relief from a drug called marinol that allowed me to eat regular meals during this time. As my counts hit bottom, I was closely monitored for fevers and infections. Even so, I felt good enough to do daily exercise, walk on a treadmill, do yoga, and be as active as possible while confined to my room.

On day 8, my doctors said I was doing so well they were thinking of discharging me in a couple more days – much earlier than expected. But then I developed an infection and a recurring fever that spiked every twelve hours for several days and delayed my discharge.

By day 19, my infection and fevers had resolved, and I went home under the watchful eye of my caregivers. I thus left the hospital in just under three weeks since transplant – much quicker than the 3-5-week hospitalization I had been told to expect.

A Memorable Month at Home

From day 20 to 50, the plan was for daily clinic visits to monitor counts, treat symptoms, and assess progress. On day 21, a bone marrow biopsy revealed that one of my donors was 99% engrafted, which was an unusually early and complete success for a cord blood transplant. With engraftment underway, we then watched for signs of graft-vs.-host disease.

During this month (day 20-50), my caregivers were essential. They drove me to daily clinic visits for blood draws, provider consultations and needed treatments. From day 20-26, I received daily transfusions of platelets and several transfusions of red blood cells. Several more transfusions as well as injections of growth factor medications to spur new white blood cells followed throughout this month. After the second week, however, they reduced my clinic visits to fewer and fewer days each succeeding week.

That first month at home (day 20-50) was also when I felt the side-effects from my treatment most keenly. The lingering impacts of chemotherapy and radiation, the engraftment process, and multiple medications produced several memorable symptoms. There were aches and pains from the engraftment itself that I treated with ibuprofen, and ongoing bouts of nausea that I managed with marinol. I was also taking about 20 scheduled pills a day, including prophylactic antibiotics, anti-viral and anti-fungal medications, anti-rejection medications, and several pills to manage side effects of these medications.

My most memorable symptom during this period was a staggering level of fatigue as my body underwent this transformation. I was sleeping eight to nine hours a night but still required lengthy naps in the late morning and late afternoon. I couldn’t stay awake for more than four hours at a time and was totally exhausted by nightfall.

On day 39, routine blood work detected a cytomegalovirus infection. It’s one of many critters that can reside in our gut our whole lives unbeknownst to us. But with immunosuppression, the virus can become active and pose serious danger. It is usually well controlled if detected early and treated quickly, so I was immediately put on a more powerful antiviral drug to address the infection.

The virus drastically reduced my white blood cell count while the antiviral medication added further immunosuppressive effects. For a few days, I had additional fatigue, aches, chills, and nausea. When the virus and anti-viral forces fought to a standstill, they contemplated admitting me back into the hospital for several days of IV, antiviral treatments. Instead of re-hospitalization, however, the compromise treatment was an outpatient infusion of IV immunoglobulin to boost my white blood cell count while the antiviral medication gradually tamed the virus. With that, I continued my recovery at home.

Through the First 100 Days

From day 50 to day 100, I experienced gradual if uneven improvement. Clinic visits tapered to once a week or less. Bone aches ceased and nausea all but disappeared. Fatigue also decreased, and when I did feel tired, I could usually trace it to increased activity levels compared to my first 30 days at home. As I was able to reduce doses or eliminate some medications, my mind cleared and my energy increased. While I experienced minor rashes, dry eyes, and sinus headaches, there was nothing that required major medical treatment or raised suspicions of graft-vs.-host disease.

By day 58, I began experiencing neuropathy in my feet. This is a common side-effect of chemotherapy, but in my case, it has been blessedly mild. It mainly presents as numbness and tingling under the balls of both feet. I was told it might resolve within a year, but it remains the only side effect that has persisted and which I now regard as permanent. It has not responded to acupuncture or cortisone injections. My best adaptation has been specially designed shoes and custom insoles that take pressure off the sensitive areas and make the condition quite tolerable.

By day 60, I was having trouble lining up caregivers but still needed to get to weekly clinic visits. I had been prohibited from driving or being without a caregiver for the first 100 days, but that was no longer practical. I carefully began driving myself to clinic visits. By then, I knew how my medications affected me and so I delayed my antifungal medication and the blurry vision it caused until I safely returned from my outings.

On day 78, my oncologist recommended removing the “Power Hickman” central line that had served me well for almost seven months. It had been with me since the beginning of my treatment and had facilitated painless blood draws and countless infusions of blood, platelets, IV medications, and chemotherapy. But with the reduction in all these procedures, the risk of an infected line was becoming greater than the benefits of keeping it in place. An added benefit was being able to take a shower without wrapping my entire upper torso in Saran Wrap to protect the gizmo.

Day 100 was a significant benchmark for several reasons. I had another bone marrow biopsy that confirmed full engraftment and no residual leukemia. Reviewing my biopsy results, blood tests, and overall progress, my oncologist said my recovery to date was “as good as it gets.”

At this time, I was able to eliminate or reduce many of my medications. More importantly, I began to gradually taper my anti-rejection medication (cyclosporine) over the next three-month period. The gradual pace of this taper was meant to allow my old body and my new immune system to learn to get along with each other, restore full immunity, and avoid GVHD

By this time, I was feeling much better and was eager to return to my regular activities. Since my blood counts were all good, I asked my oncologist her advice. She provided a rather technical explanation of why I was still at considerable risk and needed to avoid crowds, continue wearing my mask in public, and follow other precautions.

My layman’s interpretation of her explanation was that even though I had sufficient white blood cells and neutrophils, my anti-rejection medication would still prevent them from fully activating in case of infection. So despite feeling better and having good counts, I needed to maintain precautions until my anti-rejection medication had run its course and my immune system was more functional and able to protect me in a germ-filled world.

Completing the Marathon

From day 100 to day 180, I continued gradual improvement and weathered some minor bumps in the road. My clinic visits were now spaced out every couple weeks, and I began to see other practitioners to assess some peripheral issues arising from my diagnosis and treatment.

Since my leukemia put me at risk for skin cancer, I saw a dermatologist who detected a small, basal cell carcinoma that was easily excised. I continue to see her every six months for full body skin checks with no further issues. My leukemia had also caused some retinal hemorrhaging that was diagnosed before transplant. A follow up visit during this period showed that all retinal issues had completely resolved with the eradication of my leukemia.

Even though I was now tapering my anti-rejection medication, its cumulative impact produced numerous unpleasant side effects. While I avoided the most serious ones, I nonetheless experienced flushing, hypertension, nausea, altered kidney function, neuropathy, weight loss, leg cramps, sinus irritation, abdominal swelling, and night sweats. I began a temporary regimen of blood pressure medication and rode out the other issues. To top it off, I also had a flare up of the cytomegalovirus, which once again was quickly detected and effectively treated with specialized antiviral medication.

On day 180, I had my 6-month biopsy which reconfirmed full engraftment and no residual leukemia. At this time, I stopped my anti-rejection medication and its unwanted side effects began to dissipate. I was also able to stop virtually all of my remaining pills with the exception of an antiviral medication which continued until day 365. With adequate immunity restored, I was cleared to do any activity I wanted with one exception: I had to avoid fungal sources of infection (yard work, turning over soil, fresh mushrooms, etc.) for the next six months because such infections are easy to contract and difficult to eradicate.

For me, this was a major psychological turning point. I accepted that I was actually better, resumed my “normal” life, and let go of lingering anxieties about my status. When my transplant oncologist said she didn’t need to see me for another six months, it was initially unnerving after such intensive monitoring. At the same time, it reinforced my sense that I had reached a major milestone in my recovery.

“As Good As It Gets” (and Some Cheap Advice)

After day 180, my care shifted back to my initial oncologist at my induction hospital. Monthly blood draws and bimonthly consultations gradually became less frequent. Four years out from my initial diagnosis, I now have blood draws four times a year and see this oncologist twice a year.

At year one and two (days 365 and 730), I returned to my transplant oncologist for my final two biopsies which found no residual disease.  At year one, they re-did my childhood vaccinations from dead viral sources; at year two, I received my remaining vaccinations from live viral sources.

There’s good reason to say my story is “as good as it gets.” First, I got into remission on the first round of induction chemotherapy. This does not happen for a significant minority of AML patients who require multiple rounds of chemotherapy or other treatments to attain remission.

Second, I had full donor engraftment in three weeks. Most patients achieve engraftment, but it typically takes longer or doesn’t happen as completely as it did in my case. In the worst-case scenario, a small percentage of patients never experience engraftment and face a very poor prognosis.

Third, I have had no graft-vs.-host disease. I had been told there was a 60-70% chance of acute (within the first 100 days) GVHD in cases like mine, but I had no symptoms that could be attributed to this cause. That reduced my chances of chronic (after the first 100 days) GVHD to 20%. Although it can appear years after transplant, I’ve had no symptoms as of this writing.

What is typical about my story are the various infections, unpleasant side-effects, and minor complications documented here. They are simply part and parcel of the disease, treatment, and transplant; few if any patients escape them altogether. But in my case, they were quite manageable with the excellent support I received from my medical practitioners and caregiver team. Thanks to them, I left my transplant hospital on day 19 and never returned.

Advice is cheap, so here’s my two cent’s worth. Even in the best-case scenario, recovery is so gradual that it’s hard to realize when you are actually making progress (especially when there are periodic setbacks). I learned to pay attention to even small steps of improvement and took heart when they occurred.

Here’s one example. Around day 40, I ran up a flight of stairs at home and became short of breath. I initially found this discouraging, but then I realized I hadn’t even run up a flight of stairs since my diagnosis, and that this was progress not regress. Recovery happens through small, incremental changes that eventually culminate in qualitative improvement. It helps to be aware of these small steps as they occur; you may even want to record them in a weekly journal to fully appreciate them.

Finally, some clichés bear repeating. Recovery is a marathon, not a sprint. Moreover, it’s a marathon on an obstacle course of potential complications. Don’t hesitate to ask for help from your doctors or accept assistance from your caregivers. It’s not a burden; it actually makes them feel better when they can help you out. Finally, cultivate patience, resilience, and fortitude as you go the distance. It will serve you well.

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Take Care of Yourself and Your Family’s Health

Building Resilience and Boosting Immunity

At a time when health is top of mind for everyone, despite the stressors, how can we ensure to emerge emotionally, physically and mentally resilient? Patient Empowerment Network Care Partner Manager, Sherea Cary sits down with distinguished guests, Sara Goldberger and Dr. Shivdev Rao to discuss building resilience and boosting immunity. Both experts define resilience, provide tips for boosting heart-lung health and provide useful tools for cultivating resilience.

Defining Resilience

Defining Resilience from Patient Empowerment Network on Vimeo.

Tips for Boosting Heart and Lung Health

Tips for Boosting Heart and Lung Health from Patient Empowerment Network on Vimeo.

Community Resources & Tools for Cultivating Resilience

Community Resources and Tools for Cultivating Resilience from Patient Empowerment Network on Vimeo.

Oncology Social Worker Checklist

Resiliency Checklist During the Time of COVID-19


Sara Goldberger, MSSW, LCSW-R, has been an oncology social worker for 30 years. Currently she is the Senior Director, Program for the Cancer Support Community Headquarters. She has also worked in hospitals and community NFP settings. She is a member of several Advisory Boards is a frequent presenter and author. As AOSW strives to continue to advance excellence in psychosocial oncology, Sara hopes to play a part in efforts to educate, advocate, develop resources, expand on research initiatives, and create networking opportunities so that AOSW can improve the care of people impacted by a cancer diagnosis.

Turning Your Home Into a Sanctuary

In Five Simple Steps

These days, whether you’re spending more time there or you need a place to unwind after a long day, you need to feel like your home is your happy place. With the help of a few simple tips you can turn your home into your very own sanctuary.

1. Define your sanctuary

Think about where and when you feel the most comfortable and happy; then bring elements of that into your space. Whether you feel your best reading under a cozy blanket and low lighting, or painting in a sunlit room, consider your needs for the space. It doesn’t have to be complicated, says Professional Organizer Kristy Potgieter at KLP Organizing, LLC. Her philosophy is: simple is better.

2. Appeal to the senses

Sound, smell, and color can all evoke emotions. Play music that soothes you or makes you happy, use candles, oils, or incense to fill your space with your favorite scents, and paint your walls with neutral or calming colors. Even changing out your light bulbs can make a difference. Pink light bulbs give a warm, calm glow to your space.

3. Ditch the clutter

Clutter causes anxiety and stress so your best bet is to get rid of it. While clutter looks different to everyone, a good rule of thumb is to remove anything that doesn’t serve a purpose or make you happy. For the things you use on a regular basis, Potgieter recommends storing them in baskets and bins, which can be both decorative and functional. She also says keeping your kitchen counters clear is a simple way to make your home appear clutter-free.

4. Bring nature inside

You can place a vase of fresh-cut flowers on your table or bring in some house plants. If you don’t have a green thumb, a photo of the ocean, a wall painted green, a water fountain, some seashells, or a piece of wood are all okay ways to incorporate nature into your home. It can be as simple as opening a window and letting in the sunlight, which is a known mood booster.

5. Unplug from technology

You don’t have to ban technology altogether, but pick times, such as during meals and the hour before bed, to not use technology at all. Spend less time on social media platforms by deleting the apps on your phone and only using your computer to log onto those sites. You can also use the “do not disturb” settings on your devices to allow yourself some down time.

 

Whatever you do, remember Potgieter’s philosophy and keep it simple. Address the things that are most important to you and let the other stuff go. “The first thing I think of when making a home a sanctuary is really taking a look around and making sure all the things you see are things you love,” she says.

Daily Practices for Cultivating Awareness and Anchoring Yourself in Resilience

Resilience is our capacity to bounce back from the inevitable challenges of being alive. When challenges arise, our meandering minds can take us into various worrisome directions, leading to a host of negative emotional states and their subsequent adverse effects on our well-being.

Although we may not have control over the external factors in our lives or needless to say our genetic predispositions, we do have the capacity to cultivate inner psychological faculties that enable us to weather the storms of life with relative calm. For most of us, these internal resources are underdeveloped. They require intentional cultivation through the regular practice of actions that support their development. Among these inner resources are self-awareness, self-acceptance, and a secure inner base to fall back on.

What is Resilience?

What is Resilience? from Patient Empowerment Network on Vimeo.

Anchoring the Mind

Anchoring the Mind from Patient Empowerment Network on Vimeo.

Focusing the attention on the natural breathing process and body cultivates self-awareness and tends to have a calming effect on the mind. By doing so non-judgmentally, we accept the process as it is truly experienced. This is not an advocation of apathy towards our lives. To the contrary, by shining the light of awareness on our experience and accepting it as it truly is, we are given a clarity from which to make any necessary course corrections in our lives.

Awareness of Breath

Awareness of Breath from Patient Empowerment Network on Vimeo.

Awareness of Body

Awareness of Body from Patient Empowerment Network on Vimeo.

A secure base is supported by continually returning our attention to our breath and body when distracted by the meandering nature of the mind. By regularly practicing the activities here offered you can enhance your capacity to bounce back and calmly weather the fluctuating trials of life.


Broderick Rodell has a PhD in chemical engineering from the Georgia Institute of Technology and a Doctorate of Naturopathic Medicine from Bastyr University. His search for self-betterment led to his passion for mindfulness. He considers himself a dedicated student and practitioner of yoga including contemplation, meditation, breath work, and mindful movement. Broderick believes that through individual evolution we can all tap into greater possibilities within ourselves.

Confused About AML Genetic Testing and Treatment? What You Need to Know

Confused About AML Genetic Testing and Treatment? What You Need to Know. from Patient Empowerment Network on Vimeo.

What is AML genetic testing? Dr. Alice Mims explains genetic testing in AML, including the necessity of testing, the effect on treatment decisions, and why patients should be retested over the course of their disease.
 
Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. She serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James.

See More From INSIST! AML

Related Resources

 

How is Acute Myeloid Leukemia (AML) Treated?

 

Effective AML Combination Treatment: Pairing Old and New Therapies

 

AML Genetic Testing Explained

Transcript:

Dr. Mims:

So, in regards to older treatments and being effective, seven plus three, which is an intensive chemotherapy, is still the standard of care treatment for patients with favorable risk AML, if they’re candidates for intensive treatments because it is potentially curative. And 7 + 3 is also the backbone for newly diagnosis for patients with FLT3 mutations, we add a FLT3 inhibitor called Midostaurin onto that, as it’s shows to improve overall survival with the addition of that compared to just the chemotherapy alone.  

And also, hypomethylating agents, which are a less intensive treatment, were the standard of care for patients who couldn’t tolerate intensive chemotherapy.  

And now we’re seeing the addition of other agents being added to this, like the BCL2 inhibitor of Venetoclax 

And recent data in phase 3 trial comparing the hypomethylating agent alone versus adding that agent did show an overall survival advantage. And so, these are definitely evolving, and I think as we are learning more about targeted therapies and how they can best be used in combination with chemotherapy other than single. Agent. But you give two targeted therapies together and having even better outcomes. We hope we continue to make improvements from where we were even just five years ago and do a better job for. 

How is Acute Myeloid Leukemia (AML) Treated?

How is Acute Myeloid Leukemia (AML) Treated? from Patient Empowerment Network on Vimeo.

 When diagnosed with Acute Myeloid Leukemia (AML), understanding available treatment options can be overwhelming. Dr. Alice Mims, an AML specialist, provides an overview of AML therapies and discusses factors to consider when deciding on an appropriate therapy with your healthcare team.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. She serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James.

See More From The Pro-Active AML Patient Toolkit


Related Resources

 

Facing a Cancer Diagnosis: Advice From An Expert

 

Effective AML Combination Treatment: Pairing Old and New Therapies

 

AML Treatment Options: What’s Available?


Transcript:

For the past 30 years, we’ve had the same treatment options, which have been standard intensive induction chemotherapy that weren’t really tailored to individual patients and had significant toxicity. And not necessarily effective for all AML genomic subtypes.

Now we have quite a bit added to the treatment arsenal for AML, including continuing intensive induction chemotherapy for patients who are appropriate. There’s also been the addition for newly diagnosed patients for hypomethylating agents and a new BCL-2 inhibitor called Venetoclax. IDH inhibitors for patients with IDH1 and IDH2 mutations. The addition of FLT3 inhibitors for patients either newly diagnosed or with relapse or refractory disease.

And liposomal daunorubicin and cytarabine in for patients with AML with MDS related changes or therapy related AML that are newly diagnosed. Lastly, there’s also a hedgehog inhibitor, glasdegib, that’s been approved for newly diagnosed AML patients in combination with low dose cytarabine.  

So, when working with patients, there are multiple factors that we take into consideration when coming up with a treatment decision together and it really should be a team approach. But one of the most important things is trying to understand the patient’s goals of care.

Because different treatments have different expectations, side effects, toxicities that we want to be sure we’re all aligned when we’re making a treatment decision together. Also, other features that we take into account can be age. Other comorbidities, including other diagnosis such as cardiovascular disease, diabetes and other medical issues patients may have.

So, for roles that patients have in making these decisions, they should know that they’re their own best advocate. And so, as you’re getting to learn your oncologist who’s helping you make these treatment decisions, it’s very important that you talk about things that are important to you in regards to quality of life, overall goals for your life. Ask questions in regard to side effects and expectations for outcomes for potential treatment. Whether they’re curative or more palliative, which can extend life. And for quality of life, it may not be curative for AML.  

So, AML really was considered a single disease 30, 20 years ago. Now we really know it’s likely dozens of diseases based off of looking at molecular features of an individual patient’s AML. So, it’s very important to try to understand what genomic features your AML may have, meaning DNA mutations that are just present in the leukemia cells. Chromosomal changes as well. And then understanding if, based off that information, that that may afford you additional treatment options other than the current standards of care.  

Effective AML Combination Treatment

Pairing Old and New Therapies

Effective AML Combination Treatment: Pairing Old and New Therapies from Patient Empowerment Network on Vimeo.

With advances in AML research and a number of new treatments, can older therapy types still play a role in care? Dr. Alice Mims discusses pairing early AML treatments with new agents to boost their effectiveness.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. She serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James.

See More From The Pro-Active AML Patient Toolkit


Related Resources

 

Key Genetic Testing After an AML Diagnosis

 

How is Acute Myeloid Leukemia (AML) Treated?

 

AML Treatment Advances: What’s  New for YOU?


Transcript:

So, in regards to older treatments and being effective, seven plus three, which is an intensive chemotherapy, is still the standard of care treatment for patients with favorable risk AML, if they’re candidates for intensive treatments because it is potentially curative. And 7 + 3 is also the backbone for newly diagnosis for patients with FLT3 mutations, we add a FLT3 inhibitor called Midostaurin onto that, as it’s shows to improve overall survival with the addition of that compared to just the chemotherapy alone.

And also, hypomethylating agents, which are a less intensive treatment, were the standard of care for patients who couldn’t tolerate intensive chemotherapy.

And now we’re seeing the addition of other agents being added to this, like the BCL2 inhibitor of Venetoclax.

And recent data in phase 3 trial comparing the hypomethylating agent alone versus adding that agent did show an overall survival advantage. And so, these are definitely evolving, and I think as we are learning more about targeted therapies and how they can best be used in combination with chemotherapy other than single. Agent. But you give two targeted therapies together and having even better outcomes. We hope we continue to make improvements from where we were even just five years ago and do a better job for.

Comprehensive Hematological Cancer Centers

Acute Myeloid Leukemia

What is Leukemia?

Leukemias are cancers that start in cells that would normally develop into different types of blood cells. It is a cancer of the body’s blood-forming tissues, including the bone marrow and the lymphatic system. Most often, leukemia starts in early forms of white blood cells, but some leukemias start in other blood cell types.

There are several types of leukemia, which are divided based mainly on whether the leukemia is acute (fast growing) or chronic (slower growing), and whether it starts in myeloid cells or lymphoid cells. The main types of leukemia include:

  • Acute Lymphocytic Leukemia (ALL)
  • Acute Myeloid Leukemia (AML)
  • Chronic Lymphocytic Leukemia (CLL)
  • Chronic Myelogenous Leukemia (CML)
  • Other – Other, rarer types of leukemia exist, including hairy cell leukemia, myelodysplastic syndromes and myeloproliferative disorders

In this article we will be focusing on Acute Myeloid Leukemia (AML) since it is the most frequent acute leukemia in adulthood.

What is Acute Myeloid Leukemia?

Acute myeloid leukemia (AML) is a cancer of the blood in which the bone marrow makes abnormal cells. The “acute” in Acute Myeloid Leukemia denotes the disease’s rapid progression In AML, myeloid stem cells usually mature into abnormal myeloblasts, or white blood cells. But, they sometimes become abnormal red blood cells or platelets. As they multiply, they overwhelm the normal cells in the bone marrow and blood. The cancer cells can also spread to other parts of the body.

This type of cancer usually gets worse quickly if it is not treated. It is the most common type of acute leukemia in adults. AML can also be referred to as:

  • Acute myelogenous leukemia
  • Acute myeloblastic leukemia
  • Acute granulocytic leukemia
  • Acute nonlymphocytic leukemia

Types of Acute Myeloid Leukemia

Knowing the subtype of AML can be very important, as it sometimes affects both a patient’s outlook and the best treatment. Most types of AML are based on how mature (developed) the cancer cells are at the time of diagnosis and how different they are from normal cells. The different types of AML include:

The French-American-British (FAB) Classification

  • M0 – Undifferentiated acute myeloblastic leukemia
  • M1 – Acute myeloblastic leukemia with minimal maturation
  • M2 – Acute myeloblastic leukemia with maturation
  • M3 – Acute promyelocytic leukemia (APL)
  • M4 – Acute myelomonocytic leukemia
  • M4 eos – Acute myelomonocytic leukemia with eosinophilia
  • M5 – Acute monocytic leukemia
  • M6 – Acute erythroid leukemia
  • M7 – Acute megakaryoblastic leukemia

World Health Organization (WHO) Classification

  • AML with recurrent genetic abnormalities, meaning with specific chromosomal changes
  • AML with multilineage dysplasia, or abnormalities in how the blood cells look
  • AML, related to therapy that is damaging to cells, also called therapy-related myeloid neoplasm
  • AML that is not otherwise categorized
  • Myeloid sarcoma
  • Myeloid proliferations related to Down Syndrome
  • Undifferentiated or biphenotypic acute leukemias

Cytogenetics

AML can also be classified by the cytogenetic, or chromosome, changes found in the leukemia cells. Changes in certain chromosomes help diagnose cancer, plan treatment, or find out how well treatment is working. Chromosomal changes are commonly grouped according to the likelihood that treatment will work against the subtype of AML.

All chromosomes are numbered from 1 to 22. And, sex chromosomes are called “X” or “Y.” The letters “p” and “q” refer to the “arms” or specific areas of the chromosome. Some of the types of genetic changes found in AML include:

  • A translocation, which means that a chromosome breaks off and reattaches to another chromosome
  • Extra copies of a chromosome
  • A deletion of a chromosome

Some of the most common chromosomal changes are grouped as follows:

  • Favorable. Chromosomal changes associated with more successful treatment include abnormalities of chromosome 16 at bands p13 and q22 [t(16;16)(p13;q22), inv(16)(p13q22)] and a translocation between chromosomes 8 and 21 [t(8;21)].
  • Intermediate. Changes associated with a less favorable prognosis include normal chromosomes, where no changes are found and a translocation between chromosomes 9 and 11 [t(9;11)]. Many other subtypes are considered part of this group, particularly those with 1 or more specific molecular changes. Sometimes, extra copies of chromosome 8 or trisomy 8 may be classified as intermediate risk over unfavorable (see below).
  • Unfavorable. Examples of chromosomal changes that are associated with less successful treatment or with a low chance of curing the AML include extra copies of chromosomes 8 or 13 [for example, trisomy 8 (+8)], deletion of all or part of chromosomes 5 or 7, complex changes on many chromosomes, and changes to chromosome 3 at band q26.

Symptoms of AML

The signs and symptoms of AML vary based on the type of blood cell affected. They are generally nonspecific and warrant investigations for proper diagnosis. The signs and symptoms of AML are:

  • Fever
  • Pain in bones and joints
  • Pale skin
  • Easy bruising and contusions
  • Recurrent infections
  • Unusual bleeding, epistaxis, bleeding gums

Causes and Risk Factors for AML

Although the cause of AML is not known, several factors are associated with an increased risk of the disease. The following factors may raise a person’s risk of developing AML:

  • Age – AML is becomes more common as people get older
  • Being Male – AML is more common in males than in females
  • Smoking – Cancer-causing substances in tobacco smoke are absorbed by the lungs and spread through the bloodstream to many parts of the body
  • Genetics – Researchers are finding that leukemia may run in a family due to inherited gene mutation
  • Chemicals – Long-term exposure to chemicals like benzene, found in petroleum, cigarette smoke, and industrial workplaces, raises the risk of AML
  • Previous Cancer Treatment – People who have received chemotherapy and/or radiation therapy for other types of cancer, such as breast cancer, ovarian cancer, and lymphoma, have a higher risk of developing AML in the years following treatment.
  • Other Bone Marrow Disorders – People who have other bone marrow diseases can develop AML over time

How is Acute Myeloid Leukemia Diagnosed?

No screening exams exist for leukemia.

Doctors often discover that a person has chronic leukemia through routine blood testing. They may also rely on their experience and current knowledge of the disease.

If your doctor suspects you may have leukemia, he or she will order specific diagnostic tests such as a:

  • Blood test
  • Bone marrow biopsy
  • Spinal tap
  • Genomic testing

Is Acute Myeloid Leukemia Hereditary?

Leukemia does not usually run in families, so in most cases, it is not hereditary. However, people can inherit genetic abnormalities that increase their risk of developing this form of cancer.

For example having a family history of other blood disorders increases your risk of getting AML. These disorders include:

  • Polycythemia Vera
  • Essential Thrombocythemia
  • Idiopathic myelofibrosis.

Some syndromes that are caused by genetic mutations (abnormal changes) present at birth seem to raise the risk of AML. These include:

  • Down syndrome
  • Ataxia telangiectasia
  • Li-Fraumeni syndrome
  • Klinefelter syndrome
  • Fanconi anemia
  • Wiskott-Aldrich syndrome
  • Bloom syndrome
  • Familial Platelet Disorder syndrome

Newly Diagnosed AML Advice from an Expert

Dr. Elizabeth Bowhay-Carnes of UT Health San Antonio MD Anderson Cancer Center provides advice for patients facing an AML diagnosis, including:

  • Understand who your care team is including the main attending physician and the main nursing contact/support person would be
  • Designate a family member or friend to play the main supportive role

Preparing for Your AML Appointment

Your first appointment can be overwhelming and can be hard to grasp the realistic expectations of life during the AML treatment phase. Here are some tips and tricks to prepare you for your first appointment:

  • Write down any and all questions you have before coming to the doctor’s office
  • Bring a notepad to the appointment to jot down notes about what is said during the appointment or ask if you can record your visit
  • Consider your values and expectations of your quality of life
  • Keep copies of your medical records
  • Bring a friend or a family member to your appointments to help you retain all the information discusses
  • Consider all your treatment options, including any clinical trials available to you

Treating Acute Myeloid Leukemia

Treatment of AML depends on several factors, including the subtype of the disease, your age, your overall health and your preferences. The types of treatment include:

  • Chemotherapy – the primary treatment options that uses chemicals to kill cancer cells
  • Targeted therapy – medications that target cancer cells, but don’t affect healthy cells. This type of treatment usually has less side effects
  • Other drug therapy
  • Stem Cell transplant – also called a bone marrow transplant, helps re-establish health stem cells by replacing unhealthy bone marrow with leukemia-free stem cells that will regenerate health bone marrow
  • Clinical trials – can involve therapy with new drugs and new drug combinations or new approaches to stem cell transplantation

it is often a good idea to seek a second opinion. A second opinion can give you more information and help you feel more confident about the treatment plan you choose.

What You Can Expect From AML Treatment

Based on your treatment options that you have discussed with your care team, it Is important you understand how treatment may affect you. Some things you should discuss with your care team and loved ones include:

  • Your personal goals and values
  • Results you can expect
  • Potential side effects
  • Palliative care
  • How treatment may affect your life
  • The financial costs of treatment

Recovery and Survival

Leukemia represents 3.5 percent of all new cancer cases in the United States, and it is the seventh leading cause of cancer death. The outlook for leukemia patients depends on which type of leukemia they have, their overall health, and their age.

In the case of AML, it makes up 32% of all adult leukemia cases and there will be about 19,940 new cases of AML in the United States this year. Remission in AML is usually defined when the bone marrow contains fewer than 5% blast cells. For most types of AML, about 2 out of 3 people with AML who get standard treatment go into remission. The 5-year survival rate for people 20 and older with AML is about 25%. For people younger than 20, the survival rate is 67%.


Sources:

“Treatment.” Acute Myeloid Leukemia Treatment | Leukemia and Lymphoma Society, 26 Feb. 2015, www.lls.org/leukemia/acute-myeloid-leukemia/treatment.

“Adult Acute Myeloid Leukemia Treatment (PDQ®)–Patient Version.” National Cancer Institute, www.cancer.gov/types/leukemia/patient/adult-aml-treatment-pdq.

“Acute Myeloid Leukemia (AML) Subtypes and Prognostic Factors.” American Cancer Society, www.cancer.org/cancer/acute-myeloid-leukemia/detection-diagnosis-staging/how-classified.html.

“Leukemia – Acute Myeloid – AML – Subtypes.” Cancer.Net, 18 Aug. 2017, www.cancer.net/cancer-types/leukemia-acute-myeloid-aml/subtypes.

“Leukemia Types, Symptoms, and Treatments.” UPMC HIllman Cancer Center, hillman.upmc.com/cancer-care/blood/types/leukemia.

“Treating Acute Myeloid Leukemia (AML).” American Cancer Society, www.cancer.org/cancer/acute-myeloid-leukemia/treating.html.

“Acute Myelogenous Leukemia.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 27 Dec. 2017, www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/diagnosis-treatment/drc-20369115.

“Treatment Response Rates for Acute Myeloid Leukemia (AML).” American Cancer Society, www.cancer.org/cancer/acute-myeloid-leukemia/treating/response-rates.html.

“Leukemia – Acute Myeloid – AML – Statistics.” Cancer.Net, 19 Feb. 2020, www.cancer.net/cancer-types/leukemia-acute-myeloid-aml/statistics.

Cancer Survivors: Managing Emotions After Cancer Treatment

Since the 1980s, doctors have tried to describe the stages cancer survivors normally go through. Most divide them into a version of the three stages described below:

Acute Survival (Living With Cancer) – Covers cancer diagnosis and any subsequent treatment. During this time, patients will undergo treatment and may be invited to participate in a clinical trial to study new cancer treatments. Sometimes services are offered to patients and their caregivers to address emotional, psychological and financial problems.

Prolonged survival (transient cancer): Post-treatment period during which the risk of recurrence is relatively high. Many patients are relieved that treatment has ended, but are concerned that they will not visit the oncologist regularly. During this stage, patients often visit the oncologist two to four times a year, depending on their circumstances.

Permanent survival (living after cancer): survival after treatment and long-term. Although two out of three survivors declare that their lives have returned to normal, a third affirms that they continue to have physical, psychosocial or economic problems. During this stage, most survivors are cared for again by their GP. Ideally, they have developed a long-term follow-up plan with the oncologist for their regular doctor to implement.

Social and Emotional Repercussions of Cancer

In addition to the physical effects of cancer, survivors experience psychological, emotional, and spiritual consequences. Many of them affect quality of life and can manifest many years after treatment. Here are some of the most common problems cancer survivors face:

Fear of Recurrence

Many survivors live in fear that the cancer will return at some point. In some cases, a major event, such as the anniversary of the diagnosis or the end of treatment with the oncologist, can trigger these feelings. Fear can be good if it encourages you to discuss your health changes with your doctor, but it can also cause unnecessary worry. Knowing your own body will help you distinguish between normal changes and more serious symptoms.

Pain

Grief is the natural result of loss. In cancer, losses refer to health, sexual desire, fertility, and physical independence. To overcome your pain, it is important to experience all of these feelings. Support groups and psychological assistance can help you deal with these problems.

Depression

It is estimated that 70% of cancer survivors experience depression at some point. Depression can be difficult to diagnose in cancer survivors, since the symptoms are very similar to the side effects of cancer treatment, such as weight loss, tiredness, insomnia, and inability to concentrate. In a 10-year follow-up study, symptoms of depression have been found to be associated with shorter survival, so seeking treatment for depression is essential.

Body Image and Self-esteem

Cancer survivors who have suffered amputations, disfigurements, and loss of organs such as the colon or bladder often have to overcome their problems to relate to themselves and to others. A negative body image and low self-esteem can affect the survivor’s ability to maintain relationships with their partner, which will have important consequences on their quality of life. Good communication is essential to maintain or regain intimacy after cancer. Consult a doctor if problems persist.

Spirituality

Many survivors feel that life takes on new meaning after cancer and renew their commitment to certain spiritual practices or organized religion. Research indicates that spirituality improves quality of life through a strong social support network.

Survivor’s Fault

Some people feel guilty about surviving cancer when others don’t. You may be wondering “Why me?” Or reevaluate your goals and ambitions in life. If you have a prolonged feeling of guilt, a psychotherapist, a member of the clergy, or a support group can help you express your feelings.

Relations

Possibly the biggest challenge cancer survivors face is how others react to their disease. Friends, coworkers, and family members may feel uncomfortable when discussing the diagnosis of cancer. They can keep silent, avoid you, or pretend that nothing has happened. Others may use humor to try to distract you and not think about your situation, instead of offering to talk about your problems. Cancer can be a long-lasting disease, so it is essential to overcome communication barriers.

Social and Work Life

Social and professional reintegration can be accompanied by many fears: concern about being exposed to a higher risk of infection, lack of enough energy to reach the end of the workday and anxiety about not being able to think clearly due to the so-called “neurological impairment by chemotherapy “or memory loss. In overcoming a life and death situation, many cancer survivors feel alienated from people who have not had the same experience and turn to other survivors for support and friendship.

You may be reluctant to reveal to your bosses and colleagues that you are receiving cancer treatment for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, honest communication with your colleagues will help you overcome these feelings.


About the author: Diane H. Wong is copywriter at write essay for me service. Besides, she is a professional nutritionist. So she is going to start writing her own blog. It can help her share her knowledge with others.

10 Ways of Thriving After Cancer

First and foremost, “surviving” cancer is amazing. After all, cancer is one of the deadliest diseases in the world! So, if you are a survivor, you are indeed worthy of praise. 

There are many types of cancers out there. One thing that they all have in common is that they are a result of uncontrolled growth of abnormal cells anywhere in a body. Early detection of cancerous growth results in a good prognosis as there is nearly no definitive cure for any form of cancer at its late stages.

Again, whether yours was at its late-stage or not and you survived, you are a winner! At this point, you should hold no reserve about cancer resurfacing and instead THRIVE. 

Now that you have survived cancer, the next step is reintegration back into society and doing the best you can to thrive while doing so. 

1. Battle your fear & anxiety head-on 

Long after getting cleared of cancer, survivors have to fight an emotional battle of fear and anxiety. No matter what the medical reports say about their health status, there is the seemingly never-ending fear of the cancer returning. 

This emotional turmoil is insurmountable and almost never avoidable unless you normally just have a strong will. You must quench this fear so that you can thrive.  A chat with your doctor is vital. Disclose whatever concerns you have about your health. Your doctor may even schedule frequent testing and care plans to make you feel better. 

2. Be devoted to your physical therapy sessions 

Cancer is usually for the long term. So, when the health providers eventually manage to get rid of all the cancerous growths, you may be left with a physical limitation like immobility. Such a physical limitation may make life less enjoyable, thus your doctor’s statutory recommendation for physiotherapy.

 Be dedicated to treatment sessions and work closely with the physical therapist as well as your loved ones. Don’t be afraid to ask for continued support as you heal.

3. Try a new hobby 

Don’t rush to get back to your old self before cancer. Try to enjoy the process more by finding new sports or leisure activities that fill your time. 

So, instead of getting mopey and worrying over cancer resurfacing, try knitting for a change, go golfing, try swimming! There is nothing too small or too big to try, and the main goal is to get you taken by any activity other than sitting down and getting paranoid. 

4. Consider returning to work

A defining part of getting reintegrated back into society after cancer is a career. If you were working before cancer, going back to work can help redefine your life. 

If you weren’t, try finding a new skill or going job-seeking. This gives you a sense of normalcy, but even better, it occupies your time! Remember, one of the most important ways to thrive after a battle with cancer is to not dwell on the past and simply enjoy the moment. 

5. Find intimacy with your loved ones 

There is nothing better than speaking to people who genuinely love you. Such emotional talks are sure to renew your confidence and help you build strong emotional support. If you are dating or married, it’ll help a great deal to bear your thoughts before your partner. Keeping it all inside won’t help and may even make you distant from them. 

6. If possible, start exercising

Numerous benefits accompany exercise. These range between boosting your physical endurance to giving your mental health a much-needed boost. 

Aside from that, nothing beats that sense of accomplishment that comes with completing an exercise session every day. Before starting an exercise regime, tell your doctor; and you may have him refer you to a physical therapist with knowledge of care for cancer survivors like you. 

If you are strong enough to exercise independently, start small with home workouts and build your way up to going for a walk at the park and then the gym. 

7. Make A List of Your Fears

This is on emotional terrain. Write down your deepest fears about life after cancer or what you think may prevent you from enjoying this new phase. This may include fear of the cancer returning, fears about your health overall, concerns of satisfying your partner in bed like you once did, fears of losing your job or doing poorly at it, and many more others. 

No matter how many they are, penning these fears down on paper can help you tackle them. After writing, you may even discover that some of these are so insignificant and shouldn’t be any trouble. Either way, you are tackling these problems head-on. 

8. Let go of the past 

This is an essential task if you want to thrive following a battle with cancer. Letting go of the past may be harder for people who have been fighting bouts of cancer over a significant number of years, but there is indeed nothing better than finding a new you. 

Cancer puts a dent in your mental health, so it may pose a challenge to let go of your history. If this is you, speaking to a counselor or even your doctor will be beneficial. 

9. Accept that there are going to be bad days 

It is a part of living to have good and bad days. As a cancer survivor, you can’t escape this, and you may even be more vulnerable, having battled one of the world’s deadliest diseases. As you strive to get back to normalcy, you have to realize that not every day will be good and that the process may be a lot harder than you expect. 

An optimistic attitude and never giving up are crucial to overcoming the dismay or depression that may set in when you’re not successful at something you try to do. You can also create a backup plan for such days e.g., take a walk with your partner, go to the cinema, etc. 

10. Share your experience with support groups 

There is nothing like working closely with people who have had similar experiences with you. Whether they are still battling cancer or not, speaking to others about your own experience surviving the disease will give them a ray of hope. It will equally do you a lot of good. 


Resource links: www.aicr.org, www.curetoday.com, www.inovanewsroom.org