Top Menu

Home
Polycythemia Vera
Myelofibrosis
Essential Thrombocythemia

symptom
splenomegaly
ET
as
1
assessing the spleen
white blood cell count
landmark
risk
diagnose

symptom
splenomegaly
ET
as
1
assessing the spleen
white blood cell count
landmark
risk
diagnose

Get expert insight and resources to support you in managing your patients with MF

Resources include perspectives from leaders in the field of MF.

Get expert insight and resources to support you in managing your patients with MF

Resources include perspectives from leaders in the field of MF.

General resources
APP resources
Video resources

HCP and APP resources
Patient resources

Spleen and symptoms

Spleen and Symptom Brochure

This resource includes key information related to splenomegaly and symptom assessment in patients with MF, as well as insights by Ruben A. Mesa, MD, FACP.

Download brochure

Self-Guided Learning Module: MF-Related Splenomegaly and Symptoms

This module focuses on splenomegaly assessment and disease-related symptoms in patients with MF.

Start learning module

Expert video

Get insights on spleen assessment from Dr Pemmaraju.

Image leads to video of Dr Naveen Pemmaraju discussing spleen assessment in MF.

Proactive Spleen Assessment in Patients With Myelofibrosis

Naveen Pemmaraju, MD

Close the transcript

Hello, I am Dr Naveen Pemmaraju, and I’m happy to be partnering with Incyte Corporation to share my perspective on why it is vital to routinely assess the spleen in patients with myelofibrosis, or MF.

Splenomegaly is an important clinical indicator in patients with MF. And in my practice, I find that spleen assessment can be a powerful tool to help monitor disease progression. This is why I proactively assess the spleen at diagnosis to establish a baseline, and at every visit throughout the course of their disease.

Spleen assessment is something we all learned in medical school, but for many of us, it is performed infrequently in our busy practices. This is why it is worth taking a few minutes to provide a brief refresher where I will review my tips and technique for examining the spleen.

We know that most patients with MF experience splenomegaly. In fact, one study showed approximately 90% of patients with MF had palpable splenomegaly at diagnosis. For this reason, I always palpate the spleen when evaluating my patients at diagnosis, as recommended by the NCCN Guidelines. Another reason to actively assess the spleen in our patients is that a growing spleen indicates the patient’s MF may be worsening. According to the IWG-MRT and ELN response criteria, a spleen that is palpable 5 cm or more below the left costal margin, or LCM, constitutes progressive disease. Additionally, splenomegaly may be associated with pain, early satiety, abdominal discomfort, and other symptoms.

In my practice, performing spleen assessment is part of my standard examination. I routinely evaluate the spleen and record my findings whether or not spleen-related symptoms are reported.

Assessing the spleen is as easy as ABCD. Accurately measure the spleen at Baseline and routinely at every follow-up using a Consistent technique and then Document your findings. And remember, baseline evaluation of the spleen provides a reference point for future measurements.

This is key in tracking progression that will influence your management decisions. Palpation can be a quick and easy method for detecting and tracking splenomegaly and will be most informative if you use a consistent technique.

To begin, your patient should be in the supine position. For a successful palpation, the abdomen should be relaxed, this may require your patients to bend their knees. Take a second to warm up your hands before placing them on the patient. I start by palpating placing my right hand just above the left costal margin and feel for the edge of the rib, as the exact position differs from patient to patient. The left costal margin is located here. Once you are just below the LCM, instruct your patient to take a deep breath, as this allows the spleen to descend where palpation may be felt.

Now gently push down, moving upwards anteriorly. Release and repeat this maneuver, walking your way down toward the umbilicus. Generally, I only use my right hand. But in some instances, I do use my left hand to support and position. As the spleen enlarges, its anterior pole continues to descend below the rib cage and across the abdomen toward the right lower quadrant. Thus, I continue to palpate over the lower abdomen until I am confident that a massive spleen has not been missed. I personally standardize spleen measurements using a tape measure in centimeters. However, the finger breadth maneuver is an alternative that may be used.

The key is to measure at baseline and utilize the same system every time to ensure precision over time. And I document my findings in the patient’s chart. Even in experienced hands, sometimes the spleen is difficult to find, or a patient is unable to lie on the exam table due to body habitus or comorbid illness. In these cases, I confirm my suspicions with imaging. Imaging may also be helpful to evaluate the spleen and obtain data if you are unable to perform a physical exam in person, such as when a patient is seen via telemedicine. Assessing the spleen at diagnosis and routinely during follow-up allows longitudinal tracking of your patient’s disease progression. I believe incorporating routine spleen assessment can help improve care for my patients with MF.

In my practice, I find that spleen assessment can be a powerful tool to help monitor disease progression.

Naveen Pemmaraju, MD

Symptom assessment and tracking

Symptom Assessment Form

A resource for patients that reinforces the importance of communicating symptoms to their physicians.

Download form

Voices of MPN Mobile Tracker App

Share this downloadable app with your patients to help them keep track of their symptoms.

Learn about app

Talking to patients about MF

See how Lindsey Lyle speaks to her patients with MF about identifying and assessing symptoms.

Image leads to a video of Lindsey Lyle talking to patients about assessing MF symptoms.

Take an assessment of your MF symptoms

Lindsey Lyle, MS, PA-C

Close the transcript

Hello, I’m Lindsey Lyle and I’m an oncology physician assistant providing care for people living with myeloproliferative neoplasms, or MPNs.

If you or a loved one have been diagnosed with myelofibrosis, or MF, it is important to know that MF can cause a variety of symptoms, some of which you may have experienced before being diagnosed and even contributed to the reason you reached out to a healthcare professional.

Determining whether symptoms are related to the normal aging process, other medical conditions, or MF itself is quite difficult for many because several symptoms typically associated with MF aren’t specific to MF alone.

Recognizing that your symptoms may be due to MF is important and will help guide appropriate assessment by your healthcare team.

We know that each person’s experience with symptoms can change over time.

Regardless of how long you’ve been living with MF, it is important to consider that the presence of symptoms can contribute to the overall categorization of risk in MF. There are 3 categories of MF risk levels: low, intermediate, or high, which are based on the number of risk factors that you have, including symptoms.

This is why it’s important to understand your symptoms and make sure you are communicating them with your healthcare professional, even if you notice changes in between appointments. When these symptoms are caught early on, they may be easier to manage.

MF symptoms look different for everyone, so take the time to note exactly which symptoms you are experiencing, how severe they are, and how they’re impacting your life.

The MF Symptom Assessment Form will guide you through a self-assessment of the most common MF symptoms. Not only will this help you identify your symptoms, but also the severity of each symptom. Bringing this form to review with your healthcare professional will prepare you for a productive visit, as they are able to have a better understanding of your symptoms, how your symptoms are affecting you, and can make an effective treatment plan for you.

You can download the MF Symptom Assessment Form by going to VoicesOfMPN.com, or you can scan the QR code on the screen. Make sure you print out the form, document which symptoms you’re feeling, and bring it to your next appointment.

Grab your form and a pen and let’s get started.

Knowing these 3 important words will help you assess how your MF is affecting you:

Symptom. Which symptom are you experiencing?
Severity. How bad is the symptom?
Impact on quality of life. How is the symptom affecting your daily life?

As we go over the MF symptoms throughout this video, first ask yourself, “Do I have any of these symptoms?” Then, “How often and how severely am I experiencing these symptoms?” And lastly, “Are there activities I once enjoyed but am no longer able to do so because of my symptoms?”

Providing an accurate assessment of how you’re feeling is essential for your healthcare professional to create a personalized treatment plan for you, so try not to minimize how your symptoms are impacting you.

Let’s start with fatigue, which can be experienced as severe tiredness or a lack of energy, and which is the most common symptom of MF. Around 8 out of 10 people living with MF, or 81%, report feeling fatigue.

Given that fatigue can be a difficult symptom to describe, when talking with people living with MF, I ask very specific questions such as:

What are ways you experience fatigue beyond the typical feeling of tiredness?
How much has your fatigue or inactivity influenced your daily life?
Are there activities that you were able to do 3 months ago that you struggle with now?

If you are experiencing fatigue, it is important to talk to your healthcare professional about how severe it is and how it’s affecting your life. Write down ways that fatigue has impacted your daily activities—or even your ability to participate in exciting life events—so you can bring this information to your next office visit and discuss it with your healthcare professional.

Fatigue in MF can be due to multiple factors, with a major contributor being related to the body’s overproduction of cytokines. Along with the next few symptoms we’re going to cover, it’s known as a “cytokine-driven” symptom. Cytokines are a type of protein in the body that affect the immune system.

When you have MF, your cytokine levels are elevated, which causes you to have various symptoms. An example of how cytokines work is when you get sick, say, with a cold, and you feel unwell. It’s the cytokines that activate your own immune response to fight the infection that makes you feel sick. Night sweats are another symptom driven by overactive cytokines and we’ll talk about this next.

Excessive sweating during sleep is another common symptom of MF that is driven by the overproduction of cytokines, affecting a little over half, or 55%, of patients with MF. If you are experiencing an abnormal amount of sweating, answer the following questions on your symptom tracker form:

Do you experience sweating that affects your sleep or requires you to change your sheets or clothing?
How often has this happened in the past month?

If you are experiencing sweating at night that is more than your usual amount, this may be due to your MF. Communicate with your healthcare professional about its severity and how much it’s affecting your quality of life.

45%, or just under half, of MF patients experienced itching, another common symptom of MF.

Have you noticed itching on your skin that is not related to a rash?
Is this associated with any burning or stinging sensation?
Is it difficult for you to take a shower, because you feel itchy afterwards? How often?

If you are experiencing excessive itching, particularly after getting out of the water, be sure to mark it down on your MF Symptom Assessment Form.

Bone pain is another symptom that has been reported by almost half, or 42%, of patients with MF. MF-related bone pain won’t feel like arthritis, which is pain isolated to the joints, such as the knees, hips, or shoulders. Instead, patients may experience extreme achiness of the arms, legs, or back that does not go away, even with pain medication.

Have you felt any deep aches throughout your body that have caused you to limit your activities?
Where do you feel these bone aches the most?

If you experience this type of bone pain, use this form to help paint a fuller picture of how you're feeling to your healthcare professional.

Unintentional weight loss is another symptom of MF, and has been reported by 37%, or over 1 out of 3 patients.

Have you been losing weight without trying? Do you notice your clothes fitting differently?
Have you noticed a significant drop in your weight over the past 6 to 12 months?

If you have lost weight without changing your diet or activity level, write down details of your weight loss on the form, and bring it to your healthcare professional’s attention at your next office visit.

About 1 in 5 people with MF, or 18%, experienced fevers without symptoms of an underlying infection. It’s important to remember to tell your healthcare professional about any fevers over 100°F.

How often and for how long have you been experiencing fevers over 100°F?
Do these fevers generally occur at the same time each day?

Use the form to record how often you're having fevers, how long they're lasting, and at what temperature, during your next office visit.

Concentration problems are another common symptom, experienced by 30% of patients. This symptom can be mistaken for something that happens as you get older or as a part of your everyday life. That is why it’s so important to keep track of how often you experience it and how often it lasts.

How often have you felt memory loss? An inability to pay attention for long periods of time? Or problems concentrating?

If you experience any of these symptoms, there's a good chance it could be due to your MF. Communicate to your healthcare professional the severity of the concentration problems and how much they are affecting your life.

Now let’s turn to MF symptoms related to an enlarged spleen. An enlarged spleen is common with MF and can be seen in up to 90% of people at diagnosis. As your bone marrow stops working properly, your spleen works harder, and it can get bigger, which in turn can cause pain under your left rib.

This discomfort is fairly common with over half of patients with MF, or 58%, experiencing abdominal discomfort. Ask yourself:

Do you experience abdominal discomfort, particularly after eating?
Do you experience abdominal discomfort with changes in position—for example, when lying flat on your back or on your left side?

An enlarged spleen due to MF can press against your stomach, making you feel full faster than you did before. Nearly half of patients, or 44%, experienced feeling full more quickly than normal.

Have you been experiencing a loss of appetite?
Have you noticed that you feel fuller after meals more quickly than normal?

Some of these symptoms may feel familiar to you. Others may not. Every person with MF experiences different symptoms, which is why it's important to slow down and record the symptoms you are experiencing.

Using the MF Symptom Assessment Form that we just went over together is a great way to help you and your healthcare professional come up with a treatment plan for you.

Record any new or changing symptoms and bring them to your healthcare professional’s attention. It may be helpful to fill out the form before each visit to help identify any changes over time.

Remember these 3 words to help you identify and assess your symptoms:

Symptom
Severity
Impact on your quality of life

Once you’ve filled out the form, take it with you to your next appointment. Remember, any one of these symptoms can stop you from doing the things you love.

If you have any of these symptoms, it is important to communicate them to your healthcare professional, and this may mean that your disease is progressing. So don’t wait. Your healthcare professional can create a personalized treatment plan that may help you get back to the things you enjoy. The MF Symptom Assessment Form is here to help you do just that. Thank you for watching this video.

APP=advanced practice provider; MF=myelofibrosis; MPN=myeloproliferative neoplasm.

Site Map
Legal Notices
Privacy Policy
Cookie Policy
Cookie Settings
Contact Us

Sure you want to disconnect with MPN Connect?

You are leaving the website of Incyte Corporation. This link will take you to a website to which our Privacy Policy does not apply.

DISCONNECT STAY CONNECTED