Tag Archive for: complete blood count

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

CAR T-Cell Therapy | Care and Monitoring Post-Treatment from Patient Empowerment Network on Vimeo.

How are myeloma patients monitored after CAR T-cell therapy? Myeloma expert and researcher Dr. Beth Faiman explains the testing that takes place following CAR T-cell therapy, how long monitoring will occur, and medications that are commonly prescribed for post-CAR T-cell therapy care.

Dr. Beth Faiman is an Adult Nurse Practitioner in the department of Hematologic Oncology and Blood Disorders at the Cleveland Clinic. Learn more about Dr. Faiman.

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Katherine Banwell:

What kind of monitoring takes places in the months following CAR T-cell therapy, and what kinds of medicines are required afterward?   

Dr. Beth Faiman:

Oh, excellent. So, the monitoring is usually on the short-term, within the first 30 to 60 days afterwards, oftentimes depending on what your blood counts are showing. You might have to get blood counts tested more frequently. So, that complete blood count shows you the white cells, the red cells. The white cells fight infection. Red cells carry oxygen. Platelets clot the blood. That’s a marker of how well your bone marrow is functioning. It also can be – those innocent bystanders can go low temporarily after this procedure.   

So, definitely those CBCs need to be tested, for some people weekly and for some people every other week. And your healthcare team will tell you how often. After that first two to three months and your blood counts are all in good shape, then we can just go oftentimes to a monthly monitoring of the myeloma labs. So, that’s the CBC and the chemistry panel but also the paraproteins in the blood and the urine get monitored.  

There’s also another test called a CD4 count that’s something that you wouldn’t have had beforehand. The CD4 count is an immune count that we want to be over 200. Oftentimes, you’ll be on an antibiotic called Bactrim or an inhaled called pentamidine to lessen the chance of a certain kind of infection called PJP, or pneumocystis. So, those are those atypical infections that we’re now seeing with CAR-T cell and other therapies.  

And as I mentioned, acyclovir (Zovirax) to protect against shingles is a medication but you’re not going to be on any anti-myeloma medications other than maybe a bone strengthener if you get that intermittently. Fortunately, after CAR-T cell, you don’t have any anti-myeloma therapy as long as you’re in remission. 

Does Untreated Asymptomatic CLL Carry Risks?

Does Untreated Asymptomatic CLL Carry Risks? from Patient Empowerment Network on Vimeo.

Does untreated chronic lymphocytic leukemia (CLL) that’s asymptomatic carry risks? Expert Dr. Ryan Jacobs explains CLL characteristics that are checked, research results from the CLL12 trial, and trends for treating vs. not treating asymptomatic CLL.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Lisa Hatfield:

So, Dr. Jacobs, if CLL is left untreated due to no symptoms, and the white blood count is up to 150-200,000. Can it transform to another type of cancer? And what are the dangers of not treating without symptoms?

Dr. Jacobs:

Yeah, so a couple points are highlighted in that question. One I would say, is that I would like to highlight, is that there is no specific white blood cell count that says you need to treat CLL. We do sometimes reference doubling time in less than six months or 50 percent or less than two months. But I would just note that actually a lot of specialists are de-emphasizing that criteria even as well. So we are really just focusing on, in terms of objective values on the complete blood count, looking at the hemoglobin and is it less than 10 platelet count? Is it less than a 100,000? And we’re using those as a guide to how healthy the bone marrow is, how much the CLL has invaded the bone marrow, but not specifically the white blood cell count.

So the answer is no, there’s no inherent danger to continuing a patient even into the 100 plus range on observation. Now, in terms of the second part of that question, are there any dangers to not treating asymptomatic patients, we actually just conclusively had the final report, the most recent report of trying to treat asymptomatic patients. And it was the CLL12 trial that was just presented at the European Hematology Association meeting that compared ibrutinib (Imbruvica) to a placebo in a blinded trial in higher risk CLL patients that didn’t meet clinical criteria to treatment. And the overall survival of the two groups after several years of following patients was, there was no difference in overall survival. So yet another study confirming that there’s no…you do not improve survival of patients when you try to treat them early.

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What Are Risks and Rewards of Telemedicine in MPN Care?

What Are Risks and Rewards of Telemedicine in MPN Care? from Patient Empowerment Network on Vimeo

How can telemedicine provide benefits and risks in MPN care? Watch as experts Dr. Joseph Sirintrapun and Dr. Jeanne Palmer explain benefits and risks of telemedicine and some of the logistics and lab test procedures and analysis.

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Experts Share Best Practices for Telemedicine in MPN Care


Lisa Hatfield:

Okay. So, Dr. Sirintrapun, the importance of connecting to specialized care when living with a rare cancer is so paramount. But with anything comes risk and rewards. What are the risks and rewards of telemedicine and maybe even some of the limitations? You both touched on that a little bit. But if you can talk about that a little bit, that would be great.

Dr. Sirintrapun:

Yeah, I’m so glad that Dr. Palmer actually illustrated to everybody, including myself, kind of how the processes work and if you had a trial, particularly with monitoring, and getting the right tests. So being a pathologist, that’s the other hat, I look at glass slides, but I also handle a lot of tests in particular, is looking at them. And in Memorial we do those complex humongous genome panels, it’s actually become much more commonplace to have 500 genes. And as Dr. Palmer had alluded to, sometimes you don’t know out of the 500, which are really meaningful, which are not. But out of that, you do know with some of them. I see it like the initial diagnosis, at least with technology, like the complex testing being done, still centered. It’s hard to outsource that to locally.

But in terms of convenience, I can see a future where a lot of these tests can be done more closer to the patient, where they’re simpler, there’s more automation. Somebody who might be a lab tech or nurse practitioner might, the instrument might be simple enough to press a button and you’ll get your results. And that’ll be just the right amount of genomes to monitor. Now going back to rare diseases and such, it depends on the rare disease. Because rare diseases have been kind of the classic paradigm for a clinical trial where you have to go to a centralized center because a lot of times the way rare diseases work is that they’re, at least in pathology, there centrally to an expert. Because there’s only one person that’s ever looked at it in the entire world and nobody else really knows. And you end up sending it to that guru.

And so the problem with that is that somebody has to know from the outside, “Hey, I think it’s this, I should send it to that person.” So you have, you already have friction and a gap right there. And you have the logistics of it just, okay, once it’s there and you get the diagnosis, what happens next? Can the patient who might be living from wherever be able to go and get enrolled in that trial? So you have all these different barriers that I alluded to before. So the advantage of the telemedicine is that you basically might have diminished the gap. You can bring that expert in terms of consultation to the patient who lives very far away. Now, going back to all the logistics about monitoring, if you had the right lab tests, and this is where the FDA comes in, and we don’t have time to go into the way lab tests are developed, but if the lab test is simple enough, you can do the monitoring more closer to the patient.

And in that way the clinical trial is much more enabling. They don’t have to fly somewhere, you have to go some…it all depends on how they can actually get the test to the right quality level and closer to the patient so that you can have the monitoring as more frequently and you don’t have the cost of actually having to ship either the patient or the sample elsewhere. So things that are changing, I’m hoping, because the technology’s there and it takes architects of clinical trials to rethink that. What’s the right technology now that we can apply it locally, so that we don’t have to do all this back and forth. And so that’s the type of thing. So going with the record, there’s lots of opportunity. I think the cautionary part would be is that tech, if you’re going to deploy something, let’s say near the patient, we call it point of care in lab testing, point of care, right?

Right, right near the patient. You have to make sure that lab test is quality, it’s actually good enough, like it met all the standards, and then you can trust the results. That’s the trick. And that’s where the cautionary part comes in. Are these things really good enough that anybody with a little experience can use it and that people can interpret the result and you can trust the result. That all these things are in place. I’m giving you the ins and outs with the way, when you want to deploy something, these are the different things you have to consider. But there’s a lot of potential as I mentioned. 

Lisa Hatfield:

Sure. Great. Dr. Palmer, do you have anything that you want to share or add to that? Risks, rewards, limitations for MPN patients about telemedicine?

Dr. Palmer:

So, I think that brought up a really good point. So when we look at these tests that you can order, I think there’s a lot of companies that do very reputable tests that are even sometimes utilized by some centers. And so at the first diagnosis, I think there’s the piece that what is going to help clinically based on the knowledge that we know, and that is some of these tests that actually can, are very good quality have somebody to be deployed, draw the blood, send it to wherever and do the test. Sometimes it’s good to be at the center itself where there’s actually labs and that increases the learning. I think that the architecture of the clinical trial which was a great way to put it, is going to be really important, because if I take a complete blood count, honestly, I mean, anyone can do a complete blood count and I can get the information that I really need to get out of it.

If we look at drug levels, that’s a far different animal is to make sure that these drug levels get drawn in the right way at the right time, sent to the right place. That can be a real challenge. So there are going to be different aspects of the clinical trial that can and cannot be done virtually and through outside resources. So I think that, that it’s certainly not all created equal. So there’s no way I can do the entirety of a clinical trial without physically having a patient at the center. However, on the other side of that coin, I think there’s probably a number of things, especially with like really routine visits where we’re not getting drug levels, we’re just checking a CBC, or a complete blood count or chemistries or something in the blood, that that can probably be done almost anywhere.

So it’s just going to take an extra layer of thought. I think that a lot of times you use what you know, so you say, “Well, this is how this clinical trial was run and they have to come in and they have to get an exam and they have to get a CBC and they have to get everything else.” I think that there’s going to be ways that we can alter that to really think what are the meaningful things we need? Like we don’t use every single solitary time point, What are the safety measures we need to make sure we capture? So it is going to require sort of a lot of thoughtful processing to figure out how to do that. The other thing to be cautious about is if you have the interpretation of the test.

So let’s say I send out a lab to one of the companies that does really extensive panels of genes, and then it goes back to their primary provider. They might look at that and go, “Well, geez, I don’t know what any of this actually means.” I mean, frankly, out of those 400 genes, there’s a number of them that I don’t even know how to interpret. I say, “Well, this is interesting, but these are the ones that I know are really critically important and can impact your, what I anticipate is going to happen to you. But some of these we don’t know yet.” I mean, I think that’s what we’re learning about. So doing these tests, sometimes getting these big panels can be confusing and frankly scary if you don’t have somebody there who is able to say, “Yes, these are the important ones. These are probably not that important. So it’s interesting that you have them, but we don’t need to worry about them right now.”

And so that’s really key, because otherwise you start to go to Dr. Google and, which is not anybody’s friend, and get yourself really terrified. So I think that that ability to put things into perspective is also, and have the ability to incorporate it into the education given and the treatment plan is really critical. So again, a hybrid model is really necessary for a lot of these to work well. And how that hybrid model works is going to be dependent on the disease type, the clinical trial in that situation. But I think that there’s ways to do it, and I personally in my own practice have created a set of rules that I’m like, “Okay, well, for this and this and this and for this you have to do that and I need to do this.” So I have certain things set up to make sure that I feel like I am providing safe care, but also being able to provide it virtually. 

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Understanding Blood Counts in Leukemia

Editor’s Note: This resource, Understanding Blood Counts in Leukemia, was originally published by MyHealthTeam.

Key Takeaways

  • Complete blood count (CBC) is a common blood test often performed for people living with leukemia.
  • If a CBC shows high or low numbers of any type of blood cell, this can help doctors better understand how your leukemia and any treatments for leukemia are affecting your body.
  • Anxiety about blood tests and waiting for results is normal, but members of MyLeukemiaTeam offer each other support.

People living with leukemia need numerous blood tests before, during, and after treatment. When you give a blood sample, it may be tested in the laboratory in many different ways. Common blood tests for leukemia include complete blood count (CBC), genetic analysis of cancer cells, and minimal residual disease (MRD) — a measurement of how many leukemia cells remain in the body after treatment.

A CBC is one of the most frequently run tests for people with leukemia. The abbreviations that appear on a CBC results report can be confusing. Here is a breakdown of what is tested for and what CBC results can tell doctors.

Types of Blood Cells

A complete blood count shows the current number of cells in your blood and what types of cells they are. Blood is made of three main types of cells: red blood cells, white blood cells, and platelets.

  • Red cells (RBCs) are also referred to as erythrocytes. Their primary function is to carry oxygen from the heart and lungs to different parts of the body.
  • White cells (WBCs) are also known as leukocytes. They work as a first line of defense in the immune system, fighting bacteria and viruses that may enter the blood.
  • Platelets are also referred to as thrombocytes. They are small cells that gather at sites of injury and help blood clot.

Two other aspects of blood are usually tested in a CBC: hematocrit and hemoglobin. Hematocrit levels measure how much of your blood, by percentage, is currently made up of red cells. Hemoglobin indirectly measures the number of red blood cells in your blood. Hematocrit and hemoglobin help doctors better understand how well your RBCs are functioning at carrying oxygen to the tissues of your body.

Normal Ranges for Blood Count Results

On a CBC, red blood cell levels, white blood cell levels, and platelet levels are typically expressed as the number of cells per microliter of blood. Normal blood counts vary by individual. However, there are general ranges for men, women, and children.

The normal range of red blood cells per microliter is:

  • 4.7 million to 6.1 million for men
  • 4.2 million to 5.4 million for women
  • 4 million to 5.5 million for children

The normal range of white blood cells per microliter is:

  • 5,000 to 10,000 for men
  • 4,500 to 11,000 for women
  • 5,000 to 10,000 for children

Normal ranges for hematocrit levels are:

  • 42 percent to 54 percent of total blood count for men
  • 37 percent to 47 percent for women
  • 32 percent to 44 percent for children

Hemoglobin is expressed in grams per deciliter (gm/dL). Normal ranges for hemoglobin are:

  • 13.5 to 17.5 gm/dL for men
  • 12 to 15.5 gm/dL for women
  • 11 to 13 gm/dL for children

Platelet counts, regardless of age or gender, are considered normal at 150,000 to 400,000 per microliter.

White blood cells are also measured by ratio of WBC types — the white blood cell differential. There are five main types of white blood cells: neutrophils, eosinophils, lymphocytes, monocytes, and basophils. In a normal blood count, the WBC differential comprises:

  • 55 percent to 70 percent neutrophils
  • 20 percent to 40 percent lymphocytes
  • 2 percent to 8 percent monocytes

Basophils and eosinophils make up the remainder.

Abnormal Blood Count Results

Leukemia can affect blood cell counts in various ways, as can many treatments for leukemia — such as chemotherapy and radiation.

What do abnormal results mean? For any given value, a result can be too high, too low, or unusual in relation to another value. For instance, the white blood cell differential may show an abnormal skew in WBC types. Abnormal results can indicate an issue in the bone marrow — where blood cells are made — or a variety of other disease processes. Although normal ranges are an expression of what is normal for the majority of healthy people, those with underlying conditions may have lower or higher ranges that are normal for them. For instance, in people living with heart disease, a higher-than-normal RBC count may be normal.

Your CBC results will help your doctor better understand how your leukemia and leukemia treatments are affecting your body. If results show your risk for serious side effects or complications is rising, your doctor may make a change in your leukemia treatment or prescribe other medications to address the problem.


If someone’s RBC, hematocrit, or hemoglobin counts are low, they are considered anemic. Anemia may occur when there are too few red blood cells being made in the bone marrow, or when the red cells are being destroyed by disease. Anemia can also be a consequence of low levels of iron, B12, or folate in the diet, along with other potential causes — including heavy or persistent bleeding. The primary symptoms of anemia are fatigue, weakness, and pale skin.

If your RBC count, hematocrit, or hemoglobin are low, your doctor may order a follow-up blood test called a reticulocyte count. Reticulocytes are immature RBCs. Counting them can help determine whether the problem is reduced RBC production or if the cells are being destroyed.

High Red Blood Cell Count

If red blood cell levels are too high, it may mean there is not enough oxygen in the blood. It can also indicate dehydration. In rare cases, a high RBC count may be due to polycythemia vera, a type of blood cancer in which RBCs are overproduced by the bone marrow. Overly high red blood cell counts are treated by drawing blood until the count is lowered. In some cases, medication might be used to reduce the amount of red cells.

Low Platelet Count

A low platelet count, also referred to as thrombocytopenia, can indicate potential problems with blood clotting. Thrombocytopenia may occur when insufficient numbers of platelets are being made in the bone marrow, or platelets are being destroyed. In some cases, the body does not recognize the platelets as part of one’s normal immune system and attacks them. Symptoms of low platelet count are bruising easily, excessive bleeding from minor cuts and scrapes, and bleeding from the nose or gums.

Transfusion is the most common way of treating low platelets, but your doctor may suggest other methods to reduce the chance of bleeding. If a blood test shows your platelets are low, your doctor may recommend avoiding common non-steroidal anti-inflammatory drugs (NSAIDs) like aspirin, naproxen, or ibuprofen. These medications can interfere with the blood’s ability to clot.

High Platelet Count

A high platelet count is called thrombocytosis. The two most common causes are a pre-existing condition or a bone marrow abnormality. High platelet counts can lead to stroke, heart attack, or a blood clot in a vein. Thrombocytosis is treated with medications that inhibit platelet production in bone marrow.

Low White Blood Cell Count

An overall low white blood cell count, also called leukopenia, means the body’s ability to fight infection is impaired. If there are fewer neutrophils in white blood cell counts, this is called neutropenia. When neutrophils are low, normal symptoms of infection may not show up, since those symptoms are specifically caused by the reaction of neutrophils fighting infection. This can lead to infections lasting longer and being harder to treat.

Low levels of lymphocytes mean the body cannot detect or fight viral infection as easily as usual, as lymphocytes are the cells that react first to viruses. If a test has shown you have low white counts and you develop a fever, you should seek immediate medical attention, as this may be the first sign of a serious problem.

Both leukemia and leukemia treatments can cause leukopenia.

High White Blood Cell Count

Also known as leukocytosis, a high WBC count is a hallmark of some types of leukemia and other cancers of the bone marrow. High white blood cell counts can also indicate an existing infection or a dysfunction in the immune system.


If red cells, white cells, and platelets all have low levels, it is called pancytopenia. Pancytopenia is a sign, not a disease in and of itself. Pancytopenia can be caused by leukemia or other diseases of the bone marrow, a side effect of chemotherapy or radiation treatment, an autoimmune condition, or the result of an infection.

Blood Counts and Leukemia Types

Different types of leukemia can be indicated by different blood test results. Acute lymphocytic leukemia (ALL) may cause a large number of immature white cells (lymphoblasts) in the blood, as well as low numbers of red blood cells and platelets. Acute myeloid leukemia (AML) may cause pancytopenia. In both chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) and chronic myeloid leukemia (CML), mature cell counts are closer to normal, resulting in less severe symptoms than in acute leukemias.

Anxiety About Blood Test Results

Blood tests make many people with leukemia nervous. Results may show how well treatment is working or whether side effects from treatments are becoming more severe. “Waiting is the WORST,” one MyLeukemiaTeam member said.

Members have come up with a variety of ways to make the process easier. One member made sure they kept a copy of any results from their tests. “I make sure I have [a] copy of my blood work before I leave the doctor’s office. I keep files on all tests and results from any doctors I see.”

Another MyLeukemiaTeam member advised others to make sure they ask about any blood test results they do not understand. “If you are ever concerned about your numbers, you should discuss them with the doctor and ask him or her to explain it better to you.”

When you join MyLeukemiaTeam, you gain a community of more than 7,000 people living with or caring for someone with leukemia. Blood count tests and results are a frequent topic of conversation.

Do you get anxious when waiting for blood count results? Do you have any tips for dealing with stress around blood tests? Start a conversation on MyLeukemiaTeam.

What Opportunities and Challenges Does Telemedicine Present for MPN Patients?

What Opportunities and Challenges Does Telemedicine Present for MPN Patients? from Patient Empowerment Network on Vimeo.

For myeloproliferative neoplasm (MPN) patients, what does telemedicine offer in terms of opportunities and challenges? Expert Dr. Jamile Shammo from Rush University Medical Center shares situations when telemedicine versus in-person visits can help provide optimal MPN patient care.

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Dr. Jamile Shammo: 

I think the medicine has provided a tremendous opportunity for us to take care of patients in general, MPN patients in particular during the pandemic. We obviously wanted to minimize the exposure of patients to COVID during the pandemic, but patients who have MPN as well as other hematological malignancies needed to have CBCs frequently to make sure that the treatments that they were on were safe, that they were doing what they were supposed to do in terms of controlling their counts. So, then there was no escaping that. And they also needed to get ahold of their doctor, so being able to do both, perhaps away from the hospital in some type of clinic and being able to connect with the physician online to discuss the results of the CBC that they had obtained in perhaps a less populated lab was tremendous. And granted, this had made it feasible to care for patients during the pandemic. But now that we are sort of emerging from the pandemic, people are realizing that perhaps those technologies are there to stay, and perhaps there’s a subset of patients that may still be able to benefit and take advantage from those resources, so we are learning as we go who may be able to continue to do this. 

I have to say though, that that may not be for every patient, and I still feel like there’s a particular type of MPN patient that will benefit from seeing the physician and having a full exam once every so often. And we can talk about the particular application that that may be, but granted telemedicine has certainly provided a tremendous advantage during COVID.  

So, when I think of the patient that might benefit most from seeing the physician via televisit, for example, it would be someone who perhaps has a stable disease. Someone who I may want to monitor perhaps every three to six months, someone who may have stable counts, and we’re just talking to about their symptoms and monitoring those types of things every so often. And perhaps I look at the labs and you can discuss their symptoms and whether or not they have splenomegaly and issues like that. Someone who may already be on a stable dose of medication and we don’t have to do any dose adjustments and even if we have to do those adjustments, perhaps we could do labs a little more frequently, so that would be all right too, but someone in whom I would like to initiate in treatment, someone in whom the disease may be progressing a little too quickly, someone who I may want to do an exam and assess their spleen, I suppose you could send them to an ultrasound facility and obtain an MRI or a CT, or an ultrasound of the imaging study that is. But there’s nothing like an actual exam of the patient. You are thinking about the disease progression, so those sorts of patients in which the disease is actually changing its pace, you may want to take a look at it, the full smear look and examine the skin for certain TKI and signs and symptoms of low platelets and that sort of thing. Look in the mouth for ulcers and things of that nature. Those are the patients that I feel like would benefit the most from seeing their physician of course, the patient who has questions and that that could be probably beyond what a televisit could do. I think those would be the types of situations where you would like to have a physical presence and discuss things that would be of extreme importance to the patient’s physical health, psychological health, and of course, labs that you may want to obtain beyond the regular CBC that a standard lab could obtain outside of your institution. There are specialized labs that not every leg outside of your own tertiary care center may be able to provide, and that is something that we need to all the time. Let’s say a patient may require a bone biopsy, well then you have to have them physically be in your place, and then you might as well, then see them, examine them and do all of the labs, and that’s the other thing that we would like to do is perhaps to bundle all of the tests that you would be minimizing the exposure of patients to frequent visits so that you would be again, lessening the exposure, potentially infections.

What Standard Testing Follows a Myeloma Diagnosis?

What Standard Testing Follows a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo

What tests will you have following a myeloma diagnosis? Are there additional tests you should request? Dr. Joshua Richter provides an overview of key testing for myeloma and why each test is necessary.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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What standard testing follows a myeloma diagnosis?

Dr. Richter:

So, the standard testing that follows a myeloma diagnosis is multifaceted. So, the first one is blood work. And we draw a lot of blood tests to look at the bad protein that the cancer cells make. So, we send tests like a protein electrophoresis which tells us how high that bad protein is. We send immunofixation. That test tells us what type of bad protein it is. You’ll hear names like IgG kappa and IgA lambda.

These are the different types of bad proteins made by myeloma cells. Oftentimes, we’ll send urine tests to find out how much of that bad protein that was in the blood is coming out in the urine. We will, typically, do a bone marrow biopsy. It’s a test where we put a needle into the back of the hip bone to look at the marrow itself. And we’ll use that marrow to figure out how much myeloma there is, any other characteristics like the genetic changes in those cells.

The other big thing is imaging. So, the classic imaging that we do with myeloma is something called a skeletal survey. It’s, basically, a listing of X-rays from head to toe. But nowadays, we have newer techniques, things like whole body low-dose CAT scans, something called a PET-CT scan, and MRI scans. And your care team may have to figure out which one is right for you at what given time.


Mm-hmm. Are there additional tests that patients should ask for?

Dr. Richter:

Absolutely. One of the most important things from myeloma has to do with the genetic risk stratification.

So, for almost all cancers, the staging has a very big impact. And people will often think of cancer in stages I, II, III, and IV, and they’re managed very differently depending upon what stage it is. Myeloma has three stages, stage I, II, and III. But the most important thing is, actually, beyond the staging is what’s called the cytogenetics risk stratification. So, it’s really important when the bone marrow is sent to be sure that it is sent for, kind of, advanced techniques. Because you really want that snapshot of exactly what the genetic profile is, because that gives us information of A) how to treat, and B) prognostic, you know, who will tend to do better or worse based on this information. And even though that may not tell us which drugs to use, specifically, it may say, should we do something like a transplant or not? Should we consider a clinical trial early or not?


I see. How do test results affect treatment choices?

Dr. Richter:

So, test results can affect treatment choices in a number of ways. Probably, the most common one is thinking about the routine blood tests like your CBC or complete blood count and your chemistry, which looks at things like your kidney function. Some drugs tend to have more toxicity to the blood counts. So, if your blood counts are very low, we may choose drugs that don’t lower the blood counts very much.

Kidney function which we, usually, measure by something called the creatinine. Creatinine is made by the muscles and cleared out by the kidneys. So, if your kidneys aren’t working very well, you don’t pee out creatinine, and that creatinine level will rise in the blood. If your creatinine level is high, we may choose certain drugs that don’t affect the kidneys or not metabolized or broken down by the kidneys.

The genetic studies that we use – we’re not quite at this base yet where we can say, if you have this genetic abnormality in your myeloma, we should use this drug except there’s some really great data on the cutting edge about a drug called venetoclax.

Venetoclax is a pill that’s used to treat other diseases like lymphoma and leukemia. And it turns out that people who have what’s called a translocation (11:14) which means part of the 11th chromosome and part of the 14th chromosome in the cancer cells swap material.

Those people respond amazingly well to venetoclax. So, we’re starting to have what we would call precision medicine where we find your genetic abnormalities, not that you got from your parents or passed to your kids, but the genetics inside the tumor cells to tell us which treatments will work best for you.

What Key Tests Should Follow a Myeloma Diagnosis?


What Key Tests Should Follow a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.

What are the key tests that should take place following a multiple myeloma diagnosis? Dr. Peter Forsberg details the appropriate tests, including imaging and blood tests, that may aid in assessing the risk and informing treatment options.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

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What testing should take place following a myeloma diagnosis?

Dr. Forsberg:             

So, after a patient is diagnosed with myeloma, or with suspected myeloma, a number of tests take place to both understand the myeloma. Get some sense for how aggressive the myeloma might be and understand what may be being caused by the myeloma at any given time. So, that involves a number of blood tests. It involves checking urine, doing at least one 24-hour collection of urine. Doing imaging, tests to look at the skeleton or different areas of the body for myeloma involvement.

And a bone marrow biopsy and what’s called an aspirate.

So, all those tests together are used to help confirm myeloma, to understand what’s going on with it and then to understand some of the characteristics of it that might be important over time.

Some of the more complicated tests when people are initially diagnosed with myeloma to get their head around are some pretty important blood tests that we monitor pretty closely.

Things called the serum protein electrophoresis and serum light chain assays. And basically, those are tools that help us measure antibodies. Myeloma is a disease; it comes from cells that make antibodies or fragments of antibodies. And by measuring those, we can understand the myeloma, we can give it some names. And then we can also measure it over time. So, those can seem a little bit impenetrable to patients when they’re first diagnosed, but they’re pretty important for patients and for people treating the myeloma to understand where the myeloma stands and how things are going.


What about genetic testing?

Dr. Forsberg:             

So, the main way that we use genetic testing in multiple myeloma is through something called, cytogenetics. And cytogenetics is a way for us to evaluate chromosomes. Chromosomes are in cells and that’s where genetic material is contained. And in myeloma, some of the main vents that drive myeloma cells to change from normal plasma cells come through changes in chromosomes.

And so, those chromosome changes that can be detected with different tests, sometimes they’re called karyotyping or what’s called FISH can give us a sense for some of the changes that may drive the myeloma or have driven it in the first place.

Key AML Testing for Better Care: Understanding Prognosis and Treatment Choices

Key AML Testing for Better Care: Understanding Prognosis and Treatment Choices from Patient Empowerment Network on Vimeo.

After an acute myeloid leukemia (AML) diagnosis, additional tests must follow to determine prognosis and treatment options. Dr. Pinkal Desai explains key tests that aid in choosing optimal care for each patient. 

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

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Other than a complete blood count, what additional testing should take place following an AML diagnosis?

Dr. Desai:                

So, a blood count or CBC is just a hint that there might be AML. It’s certainly not diagnostic.

But when you see that there are some abnormalities in blood count, and there might be the presence of these immature cells or blasts in circulation, there is suspicion that this is acute myeloid leukemia. The diagnosis, the gold standard for diagnosis, is a bone marrow biopsy, which is a procedure that can be done out-patient or in the hospital, depending on where the patient is. It takes about 15 minutes, where we take a sample out of the hip bone and look at the cells. This is where bone marrow is being made, so you’re going to exactly where the problem lies, and seeing if the blast count is increased.

So, the diagnosis of AML is established when the blast count is over 20 percent in the bone marrows. And normally, it needs to be less than 5 percent.

And if it’s over 20 percent, that’s the diagnosis of AML. Whether it’s over 20 percent in the bone marrow or in the peripheral blood.

It doesn’t matter, one way or the other. This is a diagnosis of AML, but you do need a bone marrow biopsy to confirm diagnosis of AML.


What about genetic or molecular testing? Is that done?

Dr. Desai:                   

AML diagnosis is just one part or the first step of saying somebody has leukemia. There is a slew of other tests that are important, and we generally consider, within the genetic tests, we generally consider two kinds of testing. One is the cytogenetics, or the karyotype analysis, which looks at the chromosomes in our bodies.

So, leukemia can be associated with big chromosomal changes, and that’s important to recognize. And the second one is the molecular testing, and we’ll go over both of them.

The chromosomes, or the karyotypic analysis, the vast majority of leukemia patients have a normal chromosome type, but there are certain recurrent abnormalities in chromosomes that we see in leukemia, and that’s important to know for a variety of reasons: treatment decisions, prognostication.

And the second part of it, the molecular, these are actually genetic routine analysis, and this is not somebody – it doesn’t mean, when we say genetic testing, it’s not the patient’s own normal genetic type. So, we’re not looking for what they have inherited. Most of leukemia is actually a random event, and it’s not inherited. We’re talking about genetic damage that the leukemia cells have within themselves.

It gives us the signature of the leukemia, and it helps us understand what genetic abnormalities are present in the leukemia. There are several panels, 50 to 100 genes, but there’s usually recurrent genetic damage that leukemia cells have.

And you want to know that, because again, like karyotype, this is important in treatment decisions, and also in the prognostication and prediction in the future.

How Often Should You See Your MPN Doctor?

How Often Should You See Your MPN Doctor? from Patient Empowerment Network on Vimeo.

Dr. Laura Michaelis discusses how frequently patients with essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF) should visit their doctor. 

Dr. Laura Michaelis is hematologist specializing in myeloproliferative neoplasms (MPNs) at Froedtert & the Medical College of Wisconsin, where she also serves as Associate Professor of Medicine. Learn more about Dr. Michaelis here.

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Dr. Michaelis:             

So, the regular follow-up for myeloproliferative neoplasms, whether that is somebody with ET, PV, or myelofibrosis, is incredibly variable. It depends on the risk stratification. It depends on how frequently you’re needing intervention.

For example, somebody with low-risk polycythemia vera whose hematocrit is elevated and gets a phlebotomy – that person I follow relatively frequently.

Maybe every month or so until I know for sure that the phlebotomy frequency, the number of times we are removing blood, and the frequency, the rate at which that happens, is adequate to ensure that that person is not spending too much time with a hematocrit of over 45 percent.

We know that because randomized trials have shown that a hematocrit over 45 percent leads to an increased risk for bad clinical outcomes.

So, early on in that person’s trajectory, I might check their blood counts more often. Once I know that they are stable and can go longer periods of time, we can relax that out. And that may happen, for example, when they become iron deficient, and the need for phlebotomies decreases.

In somebody with essential thrombocythemia that’s well controlled, again, one might do blood counts every three months or maybe, if things are very stable, every six months.

This is something that I usually make sure that I’m following the national guidelines on and that I adjust from a patient standpoint. If somebody is seeing their PCP in three months and getting blood counts, and things have been stable, then there’s no reason to see more frequently.

Now, when do I see people more frequently? For example, if they’ve started a new treatment, and we want to make sure that their kidneys and liver are doing okay. If I’ve noticed a change in one of their organ functions on the basis of something and do a little tweaking of their medicines, then I might see them more frequently.

So, again, there’s no set-in stone. This is part of the art of medicine, and you wanna talk with your doctor about what you should expect and who’s gonna be following up on the tests that are drawn.

Fact or Fiction? AML Causes & Symptoms

Dr. Daniel Pollyea, an AML specialist, dispels common myths around the causes and symptoms of AML and shares advice so that you can identify credible resources for information. Download the Program Guide here.

Dr. Daniel A. Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. 

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I’m Ross Reynolds. Today we’re gonna be debunking some common misconceptions about the causes and symptoms of AML.

And joining me is Dr. Daniel Pollyea. Dr. Pollyea, could you introduce yourself?


Dr. Pollyea:

Yeah. Hi. Good morning, everyone. I’m Dan Pollyea. I’m an Associate Professor of Medicine here at the University of Colorado, where I am the Clinical Director of Leukemia Service.



I wanna emphasize to you that this program is not a substitute for medical advice, so be sure to consult your healthcare team when it comes to solid information about it. But you will get some background that I think you’re gonna find useful. And you might have some questions as we go along.

 Dr. Pollyea, let’s start out with the basics. What are the causes of AML?


Dr. Pollyea:

Yeah. So, Acute Myeloid Leukemia, it’s a disease, a cancer of the bone marrow.

And it’s the result of an accumulation of mutation and chromosomal abnormalities that affect the DNA of a precursor cell in the bone marrow, otherwise known as a stem cell.

And those abnormalities accumulate until that cell can no longer properly mature, and it also can’t properly die. And so, a cell like that just makes copy after copy after copy of a cell until it crowds out the whole bone marrow with these sorta useless, immature cells.

And the end result of that is the failure of the bone marrow, which causes all of the problems associated with this disease. So, biologically, that’s sort of what happens to make this disease occur.



What are some of the myths that you hear from patients that come in and they say, “Oh, this must’ve caused my AML,” but you have to tell them that’s not so?


Dr. Pollyea:

Right. So, I mean, this is one of the most frustrating issues for patients and their families after diagnosis. I mean, it’s a rare disease, only about 30,000 cases a year in the United States. And so, trying to associate a rare disease with external or environmental factors is difficult to impossible. So, although there are a variety of exposures that probably contribute to this disease, we have very little understanding of what those exposures typically are or how that all works.

So, there’s a few things that we know pretty well; large doses of radiation, either associated with like industrial accidents like the Chernobyl disaster, or some of the radiation therapies that patients receive for other types of cancer. Other types of chemotherapy that are used to cure other cancers can contribute to this disease in later years.

We know that there are certain precursor conditions that can evolve to AML, so a person with myelodysplastic syndrome, for instance, has a fairly high chance of someday evolving to develop Acute Myeloid Leukemia. But beyond these sort of a few associations, there isn’t a whole lot that’s known or proven.



Now there is radiation associated with X-rays, and some people think that X-rays can cause AML. Is that true?


Dr. Pollyea:


So, I mean, I think a priori no because millions of people get X-rays every day, and only 30,000 people a year get AML. So, clearly it’s not a simple association between getting an X-ray and developing AML. But I think that there is an unknown interaction between environmental exposures and a person’s individual genetic makeup that makes a person more or less susceptible to developing something like AML with respect to exposure to the environment or X-rays and things.

So, while you cannot say that getting an X-ray will lead to AML, certainly there are some people who are more sensitive to the damage that’s done by something like an X-ray. And so, the best course of action is to be cautious and judicious about your exposure to these things, but not to not get these things when they are medically necessary.

So, that’s the challenging balance.



Here’s something else we’ve heard, that weed killers can be a risk factor for AML. Is that true?


Dr. Pollyea:

I mean, I think there’s a lot coming out now about weed killers and their association with other types of cancers. Again, I go back to the limitation we have in that in only 30,000 people a year in the United States get AML. Millions of people are exposed to weed killers.

We’re statistically never going to be able to make a clear association. I think that there are certainly some risks for some people. Whether you’re that person who’s more susceptible to developing leukemia or any other cancer because of exposure to a weed killer is impossible to know.

So, like all of these things, I think the advice we have is you have to live your life. You have to do your best to sort of avoid things that you can avoid that you think would be… Or that may cause problems. But not to let those things prevent you from living a normal life.

I know that’s not a satisfying answer, but at the moment that’s the best answer we have.



Is formaldehyde exposure another risk factor for AML?


Dr. Pollyea:

Yeah. We think that it is, and kind of along the lines of benzene. But, again, we think that those studies that have shown those types of association show it in very high amounts, amounts that most people in this country would not be exposed to. But I do think, or we do think that there is something to that, to formaldehyde somehow contributing to this.



What’s the difference between a risk factor for AML and a cause of AML?


Dr. Pollyea:

Yeah. So, I think risk factors by definition are things that may contribute to AML. And a risk factor for AML by that definition could be walking down the street and having some exposure to radiation from the sun. A cause of AML is something that is a much more solid sort of well-understood factor.

Like I said before, having myelodysplastic syndrome, there is a high chance that that can evolve to Acute Myeloid Leukemia. And if that happens then the MDS, the myelodysplastic syndrome, could be considered or would be considered the cause of your AML. So, very, very different in terms of the amount of evidence that goes into making those determinations



Is there a genetic component to this? Can this run in a family?


Dr. Pollyea:

Yeah. So, this is a disease of the genome.

So, I mean, in a lot of respects it is a genetic disease. But the question is very different when you ask is this an inherited genetic disease? Is this disease due to a gene that I inherited from a parent or could pass along to a child?

For many, many years, the answer from the medical community was, “No.” This was not considered to be a disease that clustered in families or that could be inherited. We now know that that’s not necessarily the case. There are some very rare cases where this does seem to travel in families or cluster in families. And we’re now beginning to understand who those people are and what those genes are.

But the vast majority of people with this disease did not inherit a gene to contribute to it and cannot pass this along to a child. This is a random, spontaneous event that occurred within one person’s own body and is not traveling within family. So, we’re learning more and more about this, but really, the vast majority of this is not an inherited genetic condition.



You’ve mentioned gene mutations. What mutates a gene? What causes that to happen that could lead down the line to AML?


Dr. Pollyea:

Yeah. Yeah. That’s a great question. Most of the time we do not know the answer to that. These gene mutations occur spontaneously, randomly, and we don’t understand why they happen when they do happen.

And I know that’s, again, not a satisfying answer. It’s very frustrating, particularly patients come in, and, “I’ve lived a healthy lifestyle. I’ve done everything right. I exercise. I eat right. How could this have happened?”

These are things that for the most part are out of the control of a person. These aren’t impacted by your diet or your activity levels, what you eat or don’t eat, what you do or don’t do. That’s a real frustration. In the end, in almost all cases we don’t know or understand why these gene mutations or these, I call them mistakes in the body, occur when they occur. We don’t understand them.

And, Dr. Pollyea, someone asked if benzene can be a risk factor for AML.


Dr. Pollyea:

Yeah. So, benzene is one of the sort of rare environmental exposure associations that we do have clear associations with AML.

But the level of benzene that a person would need to be exposed to is really something that hasn’t been seen in this country in a very long time.

We’d be talking about like an industrial accident type exposure in almost all cases, so being exposed to a cleaning solution or some other fairly minor exposure to benzene, we don’t think is enough, in most cases, to prompt this disease. But benzene in very high doses, like an industrial accident, yes, that is something that we understand can certainly contribute or cause AML.



Autoimmune diseases, such as arthritis, can they increase the risk of AML?


Dr. Pollyea:

Oh, boy. That is a really interesting one. So, there are papers in the literature that do support those associations. And I know in my own practice I certainly see that trend. So, I do think that there is something there. There is a proven association between autoimmune conditions and myelodysplastic syndrome, which I said before can be a clear precursor condition to AML. So, certainly, that is an association that is a possibility.

It can be a little difficult to tease out whether it’s those diseases that are associated with ultimately developing AML, or the treatments that people get for some of those autoimmune diseases. Those treatments can modulate the immune system in certain ways that may, in fact, contribute or drive the disease. So, that’s a difficult thing to tease out.

But in general terms, yes, I think there are some associations. Now not by a long shot everyone with an autoimmune disease gets AML. It’s a teeny, tiny fraction. But I think there is an association there.



How easy is it to diagnose AML?


Dr. Pollyea:

Well, I mean, I think there’s very clear diagnostic criteria for AML. But I guess that doesn’t really answer the question. And we certainly have patients who come to us after many months of frustration without a clear diagnosis.

So, those scenarios can play out. Many times AML’s a very dramatic presentation, so people get very, very sick very, very quickly with extraordinarily high white blood cell counts and suppression of all the other blood counts that come from the bone marrow like red blood cells and platelets.

In those cases it’s pretty clear that there is a type of acute leukemia going on. There can be some difficulty distinguishing Acute Myeloid from Acute Lymphoblastic Leukemia; those are sort of like cousins, but very different and treated differently. So, it kinda runs the gamut. I mean, it can be pretty clear, but it’s sometimes missed, so yeah.



This is a great lead-in to my next question, which is about the symptoms of AML. What should be the warning signs that this might be something you need to get looked at?


Dr. Pollyea:

Right. So, at presentation, the main symptoms are reflective of the fact that the bone marrow, the organ that makes all the cells of the blood, has failed.

So, that can cause severe anemia. Signs of anemia: a white sort of appearance, feeling dizzy or lightheaded when standing, short of breath, weak, tired, fatigue. Those are all pretty clear presenting symptoms for AML. Because the bone marrow also is responsible for making platelets that clot the blood, some people will present with a bleeding complication, or a very subtle rash made up of these particular red dots. We call that a petechial rash. And that rash can come on when the platelet count gets very low.

Sometimes a person will present with an infection or infections that don’t go away or don’t clear because of decrease in white blood cells, the infection-fighting cells of the bone marrow. Those are made in the bone marrow and can fail in the setting of this disease. So, those are the most common symptoms at presentation, symptoms that are reflective of bone marrow failure.



You mentioned that sometimes the presentation could be very dramatic, and it sounds like the symptoms are very severe, very quickly. Is that always the case? Is that often the case?


Dr. Pollyea:

That is the case in, I would say, a minority of times. That’s usually the case. It’s more often seen in younger patients with AML. Typically, older patients with AML have a more smoldering course and a much less dramatic presentation, although this sort of very dramatic and dangerous presentation can happen in older patients, but it’s probably something like a third of the time that those very dramatic and medical emergency presentations occur.



How important is early diagnosis?


Dr. Pollyea:

Well, I mean, it’s crucial. I mean, in particular in those cases where it’s a very dramatic and proliferative diagnosis, or presentation. A quick diagnosis and recognition of this condition is very important because the sooner a person starts effective treatment the better the ultimate outcome is.

I would say in general terms that applies to all AML patients, but certainly there’s some degrees of variation. So, there’s some AML patients that when I hear about their case on the phone from a referring doctor, it’s appropriate to see them next week in the clinic.

So, it’s not always a medical emergency, but we would never, even in those next-week-in-the-clinic patients, this isn’t something that can wait for weeks or certainly months. This is something that needs to be addressed fairly quickly.



What are the best ways to manage those symptoms?


Dr. Pollyea:

Right. So, I mean, at presentation, all those symptoms, the best way to manage those are to start treatment as quickly as possible. So, impacting the underlying cause of this disease is the most important and critical factor to getting a person feeling better because all of these problems stem from the disease in the bone marrow, and so everything else that you do to sort of help a person’s symptoms are Band-Aids when you’re not talking about getting to the root cause.

So, that’s at presentation. Now once we start treatment, there are many potential side effects to any number of treatments. And it all is dependent on what treatment you’re getting and other things about you that will make this a significant problem in some cases. And in that setting, we do have ways that we can aggressively manage a person’s side effects.



Can you manage all of the symptoms? Or can people still be experiencing symptoms even after they’re in treatment?


Dr. Pollyea:

Absolutely. So, a person with this disease, depending on how long they’ve had it and some of the features, may not be feeling back to their baseline self for potentially weeks or months after treatment starts in the best-case scenario. So, that can be very frustrating, but a person needs to sort of be able to continue to have a good outlook and stay positive.

Because we are able in many cases to make a big impact on this disease and return a person to their pre-disease quality of life.



What are some of the myths that you hear, Dr. Pollyea, about the treatment? Some things that people come in to you saying they think that it helps, but there’s no science to back that up?


Dr. Pollyea:

So, myths about treatment, so many people have a lot of preconceived notions about the intensity of a therapy that they’re going to be asked to withstand. And although sometimes we do treat this disease very intensively, that’s not always the case, and now we have some very effective lower-intensity regimens that can be used in a variety of different scenarios.

There are a lot of people who have a lot of preconceived notions about a stem-cell transplant or a bone-marrow transplant and whether or not they would be eligible for this based on maybe what they’ve heard from friends or family, or what they’ve seen in the internet.

And those are often incorrect. And so, keeping an open mind about treatment options, and discussing those in detail with your doctor are really, really important.



You mentioned sometimes it presents in young people, sometimes in older people. What’s sort of typical?


Dr. Pollyea:

This is a disease of predominantly older patients, so the median age of presentation is 68. So, that means that over half of the patients are over 68 years old at diagnosis. So, while this does happen, can happen in younger patients, that’s really an unusual situation. This disease is, like I said, it is predominantly a disease of older patients.



There are some patients who I understand think that supplements can deal with the symptoms of AML. Is that accurate?


Dr. Pollyea:

You know, I mean, I think the supplement question is always a challenge. A lot of these supplements, or most of these supplements have never been tested with the rigor of treatments that we’re accustomed to in the medical establishment.

That being said, I won’t deny that some of the supplements can help patients based on what patients’ experiences are and what they tell me. I think what’s really important is just be very open and honest with your doctor about the supplements that you’re taking or want to take to ensure that there are no sort of unanticipated interactions with treatments.

Because I think most doctors are very open to having their patients care for themselves in the ways that they’ve become accustomed to, and they know their bodies very well, and we’re very open to that. But there are sometimes that a drug or a supplement might have a bad interaction with the treatment.

And so, a good example in my practice is antioxidants. So, there’s a lot of literature, a lot of interest in antioxidants as cancer-prevention treatment.

And a lot of that is not well-established, but still I don’t see much harm. But when it comes time to treating a cancer, that’s a very different situation. When we give a patient treatment to try to kill the cancer cells, many times we’re trying to provoke oxidation. That’s part of how these drugs and these treatments work.

So, if you’re taking those treatments, but also at the same time taking antioxidants, there’s the potential you could sort of be cutting your therapy off at the knees, fighting it with one hand behind your back. So, for the period of time when my patients are getting an active treatment, I ask that they don’t take it antioxidant.

And they can resume that in the future in the hopes of preventing another cancer. But the time to prevent with an antioxidant isn’t appropriate when you’re dealing with an active cancer. So, that’s just one example.



Fatigue could be a symptom of AML, but there are a lot of causes of fatigue.

How do you differentiate between something that really could be AML and something that isn’t?


Dr. Pollyea:

Yeah. That’s a challenge because I think these are, as I said, older patients. And older patients have a lot of other medical problems. And older people get fatigued, just that’s unfortunately part of the normal aging process. So, we would usually make an assumption that a person’s fatigue and diagnosis is due to the leukemia, the anemia as a result of the leukemia.

But as we successfully treat a patient if they are responding based on their numbers and other objective criteria, but the fatigue is not improving then I think that’s where we would start to look at other contributing factors, and there can be many, so having an open mind at that point is important.

But at the beginning, this is such a monster of a disease, it’s so overwhelming, I think the focus is usually on assumption that the fatigue is due to the disease or to a treatment associated with this disease.



This question: is loss of appetite a symptom of AML?


Dr. Pollyea:

Yeah. I definitely see that, hear that, so sometimes people come in and they say that. Sometimes it may not be a loss of appetite, but an extreme weight loss, so a lot of different types of cancer, including AML, can cause that, just basically unintentional weight loss.

A person’s not trying to lose weight. They’re eating what they think is their normal amount and they’re losing tremendous amounts of weight. So, those are both potential presenting symptoms with AML. And loss of appetite, unfortunately, can be associated with some of the treatments for this disease. And taste changes, things not tasting good, can all contribute to that as well, so those are all challenges that our patients face.



How important is to get a second opinion? I mean, are all doctors like you pretty much on the same page when it comes to symptoms and treatment?


Dr. Pollyea:

So, this is a challenge. So, the answer to the second question first is unfortunately, no. A lot of this hasn’t quite been standardized. And some doctors, oncologists, cancer doctors, they’ll predominantly be treating the things that are common: colon cancer, breast cancer, prostate cancer. And they will probably only have a few cases of acute leukemia a year.

And so, their approach to this is going to be different than somebody who spends all day seeing patients with AML and thinking about AML.

So, a second opinion is a very nice thing to be able to do. The problem with this disease is that most times it doesn’t afford that opportunity. So, with other conditions you have some time to go out, read about it, talk to some different doctors, get a good plan together.

With AML, often that’s not a possibility. A person is so urgently sick that you have to sorta deal with the resources where you are. The best recommendation I have there, if you do find yourself in a situation where there’s not a lot of expertise is to ask your doctor to just call somebody in the region or email somebody in the region who may have that expertise.

And most doctors all over the country have that sort of resource or partner that they will go to and talk the case through with them, and maybe a transfer to one of those high-volume centers is appropriate.

And maybe that’s not a possibility or appropriate, but maybe you would benefit from just talking… Maybe your doctor would benefit from talking this through. But in cases where it’s not such a dramatic presentation, then yeah, for sure, I think a second opinion can be appropriate. But this isn’t something that can be sort of drawn out for long period of time.



You know, when you find out something like this, your tendency might be to jump on the web and start searching for AML. How do you vet those sources that you look at? How do you figure out that their – what would be a sign that they’re bogus sources?


Dr. Pollyea:

Yeah. I mean, I think this field is so rapidly changing and the treatment that we have, that I would, for the most part, assume that what you’re finding on the web is not relevant and is not an up-to-date resource. So, the resources that I listed, the NCCN, UpToDate, the Leukemia & Lymphoma Society, I should mention.

A very important resource that has up-to-date information, and they have even phone numbers for patients and their families to call to get connected with the proper people in a particular city, so that is a really important resource. But I’d be really, really cautious about what you find on the internet because things are changing so fast in this field. There’s a lot of outdated and misinformation on the internet.



Well, then there’s outright scams. One of the things you mentioned before we went on is be cautious if someone’s asking you to put money upfront, or if it’s a nonmedical facility. What are some things that people should watch out for?


Dr. Pollyea:

Yeah. So, one of the things that is so important in our area is clinical trials and participating in clinical trials. Patients who opt to do this and receive experimental therapies can sometimes get the treatment of the future, get a drug that’s not currently available through the FDA, but may have a lot of promise.

And this is the way that we fight this disease. We’ve recently had an onslaught of approvals for AML and that’s because the patients being willing to participate in sanctioned clinical trials. So, participating in a sanctioned clinical trial is crucial, and it’s always a recommendation of all leukemia doctors.

When you participate in a conventional clinical trial, you’re asked to sign a consent form that explains what you’re doing and why. There is a confirmation that this has been vetted by an institution’s regulatory board that is prioritizing the safety and well-being of you, the patient. This has been approved by the FDA as a clinical trial. Nobody would ever ask you to pay money. That’s not ethical to participate in a clinical trial. Insurance covers whatever standard of care. And the clinical trial covers anything that isn’t.

So, if you find yourself in a situation where you’re not being asked to sign a consent form, where a clinical trial has not been reviewed by a regulatory board, where your doctor is not a leukemia specialist, where the FDA has not sanctioned the treatment, all of those are alarm signs.

Because there are people out there that are preying on patients in a desperate situation, a very difficult time in their life, and giving them sort of false hope and leading them down paths that are not legitimate.

One easy thing to do to sorta check to see if a clinical trial is legitimate is to go onto clinicaltrials.gov.

This is a resource set up by our national healthcare system that now feeds in every legitimate clinical trial from all over the world, needs to be registered on clinicaltrials.gov. So, if you can’t find your clinical trial on clinicaltrials.gov, I would have a lot skepticism and caution about that.



Like what advice do you have for people when they’re first diagnosed? What are the first things they should try to do?


Dr. Pollyea:

Yeah. I mean, that reaction is totally normal and natural. I mean, many times these people are perfectly healthy or have been perfectly healthy, and this news is a complete shock.

And so, it is normal and appropriate to have some period of grieving for the healthy life that you are losing. But I would also, while giving yourself that time to grieve, first, draw on your support system, your family, your friends. Allow them to help you. Accept that assistance that they have. And to be optimistic because we are getting so much better at treating this disease.

I had mentioned before, there has been an onslaught of approvals for drugs in this area the likes of which hasn’t been seen in decades. We have new tools and weapons in our arsenal that we couldn’t have dreamed of even a few years ago.

We in our community are very excited and hopeful about the future and we hope that that will translate ultimately to patients, but being depressed or being down, being scared, all of that is normal.

All of that is expected. Anyone would feel like that. Allowing yourself to have those feelings and emotions is important, as long as it doesn’t get in the way of doing what you need to do to fight this disease.



It sounds like you’re hopeful about new treatments for the disease. How about a cure? What’s the science? What’s the medical science say about that? Are we getting any closer to that?


Dr. Pollyea:

We are getting closer to curing this in more cases. So, like I mentioned before, as bad as this is, we can already cure some subsets of patients. There’s one type of Acute Myeloid Leukemia called Acute Promyelocytic Leukemia, APL. It’s an uncommon form of AML, less than 10 percent.

But we can cure close to 99 percent of people with APL. And APL, 15 years ago, was universally the worst form of acute leukemia to get. So, that dramatic 180 that we’ve seen in APL, we are hoping to translate into other forms of AML.

Some other forms of AML have cure rates as high as 50 percent, 60 percent, 70 percent in the right setting. Sometimes we can cure patients with a stem cell transplant fairly reliably. So, we are very, very hopeful about our ability to continue to make progress and cure more and more and more of these patients. That’s the future that we see.



Dr. Pollyea, thank you so much. And thank you so much for ending on such a positive note. We really appreciate it. And thank you for joining us for this program today.

To learn more about AML and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Ross Reynolds. Thanks for joining us.