What are some ways myeloproliferative neoplasm (MPN) providers want patients to prepare for telemedicine visits? MPN expert Dr. Jamile Shammo shares advice to avoid common obstacles to optimal telemedicine visits.
Do you ever wonder what your doctor wishes you would do before having a telemedicine appointment with them? After all, they are meeting with patients almost daily for telehealth visits so they know what makes a successful appointment. Listen as Dr. Jamile Shammo shares her advice on how to prep to make the most of your time together:
Dr. Jamile Shammo:
When preparing for a televisit, I think it’s so important to know whether or not you would have a connectivity issue. A lot of times, I’m trying to connect with the patient and then we realize that their phone isn’t equipped to handle the televisit and that is kind of disappointing to find that out a minute before you try to connect then that visit becomes a telephone encounter, which is again, less satisfying for some patients. I mean it does the job, but again, it doesn’t provide me with the exam…part of the exam that I’d like to do, at least in that way.
If you are unsure on what platform to use for your appointment or if you have to download an application, it is worth asking your care team ahead of time as Dr. Shammo says. Most institutions have a person that can assist you with setup prior to the appointment, especially if it is your first virtual appointment.
Dr. Jamile Shammo:
It would be helpful to make sure that you have a blood draw or if your physician would like to have a blood draw in my case, I always like to have a CBC beforehand or perhaps a chemistry or maybe ion studies or what have you, to have that so that there will be something to discuss. Make sure that your physician has had those results before you have the visit. Sometimes it is also disappointing that the patient thinks I’ve received those results when I actually haven’t and I have no control over that, so that would be the other piece.
Take control of your visit by asking staff ahead of time if you can have a blood draw or other testing and that those results are shared with the doctor prior to your visit, that way you can discuss them live. You can typically request this by calling or using a patient communication portal. Just like with in-person visits, have your questions ready or items you would like to talk about in order to utilize your time effectively.
https://powerfulpatients.org/pen/wp-content/uploads/How-MPN-Providers-Want-You-to-Prepare-for-Telemedicine-Visits.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2023-04-27 15:25:032023-04-27 15:44:53How MPN Providers Want You to Prepare for Telemedicine Visits
What myeloproliferative neoplasm (MPN) patient type makes a good candidate for telemedicine visits? MPN expert Dr. Jamile Shammo shares her perspective of patient situations that work well for telemedicine and those who can benefit from in-person visits as part of ongoing care.
As more institutions start to have in-person visits instead of only telemedicine visits, you might be wondering if you should keep doing telemedicine visits or move back to seeing your physician in-person. Some people might want to continue doing telemedicine for a number of reasons, including convenience/no travel involved and limiting your exposure to colds/infection from other patients. There are certain MPN patients that could be seen with telemedicine visits or fewer in-person visits. Listen as Dr. Jamile Shammo explains.
Dr. Jamile Shammo:
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.
As Dr. Shammo notes, if your MPN is considered stable and you typically only see your doctor every three to six months, it might be worth continuing telemedicine visits instead of going back to in-person visits.
Dr. Jamile Shammo:
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.
If you are on a stable dose of your medication and don’t need any modifications or just have minor adjustments, you could consider staying with telemedicine visits.
But what patients should consider doing more in-person visits, now that COVID-19 precautions are lighter? Dr. Shammo goes on to explain THAT patient could be…
Dr. Jamile Shammo:
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.
As always, please discuss with your health care team before deciding to switch to only telemedicine visits or going back to in-person visits. They know your history and can help decide what is best for you and your care at this particular time.
https://powerfulpatients.org/pen/wp-content/uploads/What-MPN-Patient-Type-Is-a-Good-Candidate-for-Telemedicine-Visits.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2023-04-27 15:20:562023-04-27 15:45:00What MPN Patient Type Is a Good Candidate for Telemedicine Visits?
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.
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.
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.
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?
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.
https://powerfulpatients.org/pen/wp-content/uploads/What-Are-Risks-and-Rewards-of-Telemedicine-in-MPN-Care.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2023-03-09 15:35:512023-04-27 15:58:46What Are Risks and Rewards of Telemedicine in MPN Care?
What testing is involved in multiple myeloma diagnosis and treatment? Watch as myeloma expert Dr. Elizabeth O’Donnell explains specific types of myeloma testing and what they check for, and patient and Empowerment Lead Lisa Hatfield shares testing that she’s received and typical tests for myeloma diagnosis and care.
So how is multiple myeloma diagnosed? The International Myeloma Working Group (IMWG) confirms diagnosis with both:
Presence of malignant plasma cells in the bone marrow at greater or equal to 10 percent or presence of extramedullary or bony plasmacytoma, confirmed with biopsy
Calcium elevation: serum calcium greater than 0.25 mmol/L (> 1mg/dL) higher than the upper limit of normal or greater than 2.75 mmol/L (> 11 mg/dL)
Renal failure (or kidney failure): creatinine clearance less than 40 mL per minute or serum creatinine greater than 177 μmol/L (> 2 mg/dL)
Anemia: hemoglobin concentration of greater than 2 g/dL below the lower limit of normal, or a hemoglobin concentration of less than 10 g/dL
Bony lesions: one or more osteolytic lesions found on X-ray, CT scan, or PET‑CT scan
Ratio of involved/uninvolved serum free light chain ratio greater than or equal to 100
Clonal plasma cells in the bone marrow greater than or equal to 60 percent
One or more focal lesions found on MRI studies (measuring a minimum of 5 mm in size)
Dr. Elizabeth O’Donnell:
Testing really does depend a little bit on the stage at which your disease is found. In general, we use a very specific blood test that lets us know that there is clonal protein present. Remember, plasma cells are a type of white blood cell, and they make something called antibodies. We use a test called a serum protein electrophoresis, which is a blood test – an SPEP, we call it – that can tell us the difference between normal, healthy antibody and clone that are made from the plasma cells that we see in MGUS, smoldering, and multiple myeloma…once we identify that there’s a plasma cell disorder, then that can set in place a workup, depending on the amount of clonal, monoclonal, M-protein that we see.
So, sometimes that involves bone imaging. Historically that was a skeletal survey where we took lots of X-rays of your body. Now we have other tests we use. PET scans, CT scans, whole body MRIs. Sometimes it depends where you’re getting your treatment, and also it depends a little bit on your doctor’s degree of suspicion.
So my myeloma was diagnosed using a scan. An MRI was done of my spine, and that’s when my doctor saw the plasmacytoma in my spine. Further testing indicated that I had something called kappa light chain myeloma. So a lot of patients will have regular tests done, blood work that may show anemia. I think if anybody has an indication of myeloma, further testing should be looked at. There’s something called a light chain assay, a normal CBC, a metabolic panel, a light chain assay was critical in my case, because all my protein levels were coming back normal. Some patients have an elevated level of protein in their blood. Mine was normal. So having all the standard blood work plus having the light chain assay done.
And then really the gold standard for diagnosing myeloma, unfortunately, right now is a bone marrow biopsy. It’s not fun. It’s not horrible. So for patients who are anticipating that, you can get through it. It will be okay. That is the gold standard for diagnosing the myeloma, the type of myeloma, and then any cytogenetics related to that myeloma that help guide the therapy that you might be getting going forward.
https://powerfulpatients.org/pen/wp-content/uploads/How-is-Multiple-Myeloma-Diagnosed-and-What-Testing-is-Necessary-After.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2023-03-02 10:44:542023-05-04 09:58:11How is Multiple Myeloma Diagnosed and What Testing is Necessary After?
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:
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:
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.
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.
https://powerfulpatients.org/pen/wp-content/uploads/Understanding-Blood-Counts-in-Leukemia.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2022-10-19 09:30:242022-11-09 16:41:27Understanding Blood Counts in Leukemia
After a diagnosis of essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF), what testing should take place? Dr. John Mascarenhas shares an overview of essential and in-depth testing for patients with myeloproliferative neoplasms (MPNs).
Dr. John Mascarenhas is Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Leader of Clinical Investigation within the Myeloproliferative Disorders Program at Mount Sinai. Learn more about Dr. Mascarenhas, here.
What tests are necessary to help understand a patient’s specific disease at diagnosis?
Usually, the blood counts are the first opening door test that allows some understanding of, again, either an abnormal production of red blood cells, platelets or under production of these cells. And, that’s really where often the evaluation begins. And then, there are further blood tests that often are done.
And I would say almost indefinitely or almost definitely one should have a bone marrow biopsy that helps categorize the type of myeloproliferative neoplasm because there can be overlap in how the blood counts can look from one disease to the next and overlap in the mutations like the JAK2 mutation. So, sometimes, the blood counts and the molecular testing are not enough, and a bone marrow biopsy looking under the microscope at the different types of cells, the proportion of cells, whether there’s fibrosis where there’s others other types of cells that shouldn’t be there and they’re looking at the chromosomes and the flow cytometry, these are associated tests. As well as almost probably anywhere anyone goes at this point, they’re going to get next-generation sequencing, which is looking at multiple genes and mutations, and that gives a more broader, deeper sense of the disease.
So, those really become the integral parts. In some cases, patients will end up getting imaging of their abdomen to see if they have an enlarged spleen or enlarged liver.
Although that’s not always necessary, that is often part of the workup. So, it’s bloodwork, it’s bone marrow biopsy, sometimes imaging is usually the cornerstone.
And, what is molecular or biomarker testing?
So, molecular testing today really means – at one point, it really meant looking at PCR for specific gene mutations.
So, for example, we would look at the JAK2 and we would say, “In a given person, is this gene mutated?” We all have JAK2 gene, but in patients with these diseases, they’re more commonly mutated which means altered in the blood cells. And, it’s very important for a patient to understand not in every cell in their bodies, but in their blood cell compartment. And, that helps us understand and start characterizing their disease, and sometimes that mutation can be measured. It can be at a low level. It could be a high level. And, that’s all put together in trying to understand the molecular basis of these diseases.
Today, next-generation sequencing has really taken over and that’s looking at more than just one gene.
Its sequencing could be 40 genes, it could be 200 genes, to get a sense of the complexity of the disease and looking for certain mutations which are considered biomarkers that can portend prognosis or I think increasingly, we’ll see may inform treatment decisions and may even be targets themselves of therapies.
Right. Should all patients diagnosed with ET, PV, or MF undergo biomarker testing? Is that necessary?
I would say it’s part of the modern evaluation and management of patients today. I don’t think that that was true 10 years ago. But, I think the field has matured. I will say I’m the first person to acknowledge to patients that we get a lot of information back, and the truth is we don’t often know what to do with all of that information. So, sometimes we get information back that can cause anxiety because you can see mutations in genes. But they don’t always inform us on how to educate the patient about their disease or tell us what to do with the treatment.
So, there is still a lag as there normally would be between the testing of the results that we get, and then the actual knowledge of what to do with that. And, that’s still a process that’s in evolution.
https://powerfulpatients.org/pen/wp-content/uploads/Which-Tests-Do-You-Need-Following-an-MPN-Diagnosis.png600600GIna Craighttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngGIna Craig2021-10-21 14:22:442021-10-21 14:44:12Which Tests Do You Need Following an MPN Diagnosis?
For myeloproliferative neoplasm (MPN) patients, what does telemedicine offer in terms of opportunities and challenges? Expert Dr. Jamile Shammofrom Rush University Medical Center shares situations when telemedicine versus in-person visits can help provide optimal MPN patient care.
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 smearlook 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.
https://powerfulpatients.org/pen/wp-content/uploads/What-Opportunities-and-Challenges-Does-Telemedicine-Present-for-MPN-Patients-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2021-08-03 16:11:252022-11-08 14:01:56What Opportunities and Challenges Does Telemedicine Present for MPN Patients?
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.
What standard testing follows a myeloma diagnosis?
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?
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?
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.
https://powerfulpatients.org/pen/wp-content/uploads/What-Standard-Testing-Follows-a-Myeloma-Diagnosis_-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2021-03-31 08:30:452021-03-31 09:10:18What Standard Testing Follows a Myeloma Diagnosis?
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.
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.
https://powerfulpatients.org/pen/wp-content/uploads/How-Often-Should-You-See-Your-MPN-Doctor_-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2020-10-27 14:43:102020-10-27 14:43:10How Often Should You See Your MPN Doctor?
Lindsey Lyle, a physician assistant specializing in MPNs, reviews the lab tests that should be administered following an MPN diagnosis and how the results could affect overall care.
Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.
When somebody is diagnosed with an MPN, there are a variety of tests that are important for coming up with treatment strategies. And so, really, before starting treatment, it’s fairly imperative to have a CBC, or complete blood count, which was very likely done that led to the diagnosis of the MPN, but that’s very critical, as well as having a differential. This is basically just looking a little bit deeper at the white blood cells and their components, so that’s a critical part of the CBC, or complete blood count.
And then, having a chemistry panel, just to look at organ functioning, such as the kidney functioning and the liver functioning, as well as different electrolytes that may be indicative of something going on that would maybe impact treatment.
Additionally, having a bone marrow biopsy with molecular testing is advised. This is very critical in leading to the diagnosis of the MPN and then, also, really differentiating what subtype of MPN a patient may have.
The bone marrow is very critical for this purpose, and the genetic testing helps us to understand perhaps if a patient is having a higher-risk disease or a lower-risk disease and can help guide treatment as well. There are a variety of other chemistry tests that are done that can help specifically when looking at patients with polycythemia vera. This may be called an erythropoietin level.
Additionally, iron studies are generally recommended before starting treatment for MPNs, just to assess iron storage, availability, and that sort of component to the treatment may vary depending on that result. Additionally, if patients are having any sort of symptoms related to an enlarged spleen, generally, having an imaging study may be warranted if the symptom is quite severe and causing problems, and getting a baseline prior to starting treatment is generally a good idea.
When looking at a CBC, there are really three main cell lines that we monitor closely in MPNs regardless of the subtype, and this includes the white blood cell count, the red blood cell count or hemoglobin and hematocrit – those are measures of the total red blood cell count – and then, also, platelets. And so, these really are three different types of cells that your bone marrow produces that help with different functions.
And so, monitoring for any sort of changes within these three cell lines – white blood cells, red blood cells, or platelets – can really help us know maybe how the disease is changing, how a patient is responding to treatment, so these three key laboratory values are very necessary and really help us as providers and U.S. patients monitor progress, or for any changes in a positive way, or perhaps in a way that needs to be addressed.
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.
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?
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?
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?
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?
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?
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?
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?
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?
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?
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.
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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.
https://powerfulpatients.org/pen/wp-content/uploads/Pollyea-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-06-05 15:38:122022-09-08 12:04:58Fact or Fiction? AML Causes & Symptoms
When it comes to online Acute Myeloid Leukemia (AML) resources, how do you separate fact from fiction? During this LIVE webinar, Dr. Jessica Altman, Director of Acute Leukemia Program at the Robert H. Lurie Comprehensive Cancer Center, will share her expertise on treatments and side effects associated with AML.
Watch online on Monday, July 1 at3 PM Eastern (2PM Central, 12PM Pacific) for a 30-minute virtual webinar. Send questions in advance to email@example.com.
Fact or Fiction? AMLis brought to you by the Patient Empowerment Network. We thank Astellas Pharma US, Inc., Celgene Corporation and Daiichi Sankyo for their support.
Host and Guest
https://powerfulpatients.org/pen/wp-content/uploads/AML-May-15-1-1.png450810PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-05-28 15:36:112019-06-07 14:16:44Fact or Fiction? AML Treatment and Side Effects
When searching for Acute Myeloid Leukemia (AML) information online, how do you know what’s credible? During this LIVE webinar, Dr. Daniel Pollyea, Associate Professor of Medicine-Hematology, Clinical Director of Leukemia Services at the University of Colorado Anschutz Cancer Pavilion, discusses AML causes and symptoms so you can decipher fact from fiction.
Watch online on Wednesday, May 15 at9 AM Pacific (12 PM Eastern, 11 AM Central) for a 30-minute virtual webinar. Send questions in advance to firstname.lastname@example.org.
https://powerfulpatients.org/pen/wp-content/uploads/AML-May-15.png450810Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-03-26 18:44:472019-04-17 18:51:13Fact or Fiction? AML Causes and Symptoms
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