IS YOUR CHANGING MYELOFIBROSIS TELLING YOU IT'S TIME TO CONSIDER A CHANGE IN TREATMENT?
IS YOUR CHANGING MYELOFIBROSIS TELLING YOU IT'S TIME TO CONSIDER A CHANGE IN TREATMENT?
Not an actual patient.
Understanding MF
Myelofibrosis (MF) is a rare bone marrow cancer that causes scarring in your bone marrow (the tissue inside your bones that makes normal blood cells) and can get worse over time. The bone marrow scarring that happens in MF affects the way your body usually makes healthy blood cells.
Here’s what that can look like in your body:
Your blood has a lot of important parts to it:
- Red blood cells carry oxygen throughout your body
- Platelets help your blood clot
- White blood cells help your body to fight infection
When you have MF, scar tissue builds up in your bone marrow (fibrosis). Because of this, blood cells are not made properly, and your body may not make enough, leading to:
- Low platelet counts (thrombocytopenia)
- Low red blood cell counts (anemia)
Sometimes other parts of your body, like your spleen, try to help raise your blood cell counts by taking on the task of making more blood cells.
As your spleen works harder to make more blood cells, it may start to grow in size. This is called splenomegaly. When this happens, you may feel pain or fullness below the ribs on the left side.
When your blood cell counts are low, you may:
- Feel more tired and/or weak
- Feel short of breath
- Bruise easily or bleed more than normal
Know the signs of progressing MF
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Pain or discomfort under your left ribs and feeling full too early
Where does left rib pain and quickly feeling full come from in MF?
Under your left ribs, next to your stomach, is your spleen. With MF, your spleen may grow because it is trying to help your body make more blood cells. This extra work causes the spleen to grow, which puts pressure on nearby organs. Symptoms can include early feelings of fullness when eating, abdominal discomfort, and pain under the ribs on the left side.
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Low red blood cell and/or platelet counts
Why do low blood cell counts (cytopenias) matter when talking about your MF?
Red blood cell and platelet counts can decrease over the course of MF—sometimes quickly. Low blood cell counts may be caused by MF progression or medications taken for MF. Many people with MF will have low blood cell counts, especially low platelet counts.
You may hear your doctor refer to MF with low red blood cell and platelet counts as “cytopenic MF.” That’s the general term for any MF with low blood cell counts. Specifically, low platelet counts is called “thrombocytopenia” or “thrombocytopenic MF,” and low red blood cell counts is called “anemia” or “anemic MF.”
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Increased need for blood transfusions
What do blood transfusions have to do with your MF?
If you need blood transfusions more often during MF treatment, it may be a sign of worsening MF that should be discussed with your doctor.
When your red blood cell counts drop low enough, you may have to get transfusions to help quickly raise your red blood cell counts and reduce symptoms of anemia (for example, if you’re more tired or weaker than usual). However, if the transfusions start helping less and less, you may need transfusions more often over the course of your disease.
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Other new or worsening symptoms
What can new or worsening symptoms tell you about your MF?
MF is a progressive disease, which means it can get worse over time. If you're noticing any new symptoms (like feeling more tired/weaker than usual or bruising easily/bleeding more) or if your current symptoms are getting worse, it could be a sign your MF is changing.
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Dose of your current medication has been lowered
If your MF treatment dose has been lowered, do you know what's causing it?
It’s not uncommon for the dose of your MF treatment to be lowered based on how your body and platelet counts are responding to treatment. If your doctor has changed your dose, it’s important to ask why so you can better understand what is causing the change.
When it's time to talk to your doctor
You may find it helpful to ask yourself questions to prepare for your appointment.
If you answer yes to any of these questions, it's time to talk to your doctor about a possible change in treatment:
- Are any of my symptoms interfering with my daily life?
- Am I feeling more symptoms or feeling worse, even with treatment?
- Do I feel full early while eating, abdominal discomfort, or pain under my left ribs (symptoms of a growing spleen)?
- Am I feeling more tired or weaker than usual?
- Am I seeing unusual bruising and/or bleeding?
As a caregiver, you see firsthand how your loved one with MF is doing. Noticing signs their MF is getting worse will help you know when it's time to talk with their doctor. To help you get started, ask yourself these questions:
- Have I noticed their symptoms interfering with their daily life?
- Have I noticed any symptoms they’re not talking about?
- Has the amount of food they eat or how often they eat decreased?
- Are they more tired than usual?
- Have I noticed they have more bruises or bleeding?
And during your appointment, here are some questions you should ask:
- “Are my lower blood cell counts a sign that it may be time for a change in my treatment?”
- “Could the changes in my blood cell counts be caused by my MF, my treatment, or both?”
- “Why have you reduced the dose of my current MF treatment?”
Write down how you're feeling, how this has changed while you've been treating your MF, and goals for your treatment. Always talk to your doctor if you have any signs or symptoms that bother you or won’t go away.
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Get a conversation going
If you're considering VONJO and need some tips on how to talk to your doctor about your MF, this guide provides helpful information to get the most out of appointments.
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Start with a symptom tracker
Use this symptom tracker to record your symptoms and how often they happen so you can have productive conversations with your doctor about your MF.
You may notice other signs and symptoms of MF that aren't listed on this page. It's important to talk to your doctor about what you are experiencing.
