It’s your life.
Diagnosis is just the beginning. Find out what defines your type of MF.
MF is a rare, progressive cancer caused by various changes (mutations) in the DNA of your bone marrow (the spongy tissue inside bones). These changes can disrupt how your body would normally produce healthy blood cells. Decreases in your red blood cell and platelet counts may be one of many signs that your MF at diagnosis might not be the MF you have today.
Here’s what that can look like in your body:
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Various parts of your blood come from bone marrow stem cells.
- Red blood cells carry oxygen to tissues throughout your body
- Platelets help your blood clot
- White blood cells help your body to fight infection
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In MF, those stem cells mutate and your body may create fewer red blood cells (anemia) and platelets (thrombocytopenia) than normal.
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When these blood cell counts drop, you may feel certain symptoms including:
- Tiredness and/or weakness
- Shortness of breath
- Easy bleeding and/or bruising
Your healthcare team will monitor your blood cell counts over time to see if your MF is changing.
How do you know if your MF is changing?
Learning more about these signs can help you understand more about what makes your MF unique.
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Why do cytopenias matter when discussing your MF?
Red blood cell and platelet counts can decrease over the course of MF—sometimes rapidly. These low blood cell counts are often called cytopenias, and you may hear your doctor refer to MF with low red blood cell and platelet counts as “cytopenic MF.”
Cytopenias may be caused by MF or by previous medications taken for MF. In early stages of MF, ~30% of people don’t have symptoms associated with cytopenias but symptoms may develop as MF progresses and blood cell counts drop.
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What do red blood cell transfusions have to do with your MF?
If you need red blood cell transfusions more often during MF treatment, this may be a sign of worsening MF that’s worth discussing with your doctor. To determine if these transfusions are needed, your doctor may test your hemoglobin level (a protein in your red blood cells) to see if your body has fewer red blood cells than normal (anemia).
When your red blood cells drop low enough, you may have to get one or more transfusions to help quickly raise your red blood cell count and reduce symptoms of anemia (eg, more tired or weaker than usual). However, as the impact of each transfusion decreases over time, you may need transfusions more frequently over the course of your disease.
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If your MF treatment dose is lowered, could it be a sign of changes in your MF?
Your MF treatment dose may be based on your platelet counts. If your platelet counts drop, your doctor may lower or otherwise change the dose of your MF treatment. In certain situations, those lower platelet counts may be caused by your MF treatment and your doctor may talk to you about VONJO.
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Where do symptoms of spleen enlargement come from in MF?
When your bone marrow isn’t working properly, the spleen works harder than normal to try to replace damaged blood cells with new ones. This 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.
When you are being treated for MF, your doctor will check your spleen size by feeling your upper abdominal area or by using imaging tests (such as computerized tomography [CT/CAT scan], magnetic resonance imaging [MRI], or ultrasound) for more accuracy. Symptoms of spleen growth may be telling you how you’re responding to treatment.
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What can new or worsening symptoms tell you about your MF?
Since MF is a progressive disease, it's important to keep track of your symptoms and tell your doctor if they worsen or become more concerning to you.
Think about how those worsening symptoms may be changing your daily routine. Do they hold you back from activities you enjoy, such as taking walks, sharing meals with friends, or spending time with your family?
If you're concerned about the changes in your symptoms, talk with your doctor. These changes could be a sign that your MF is evolving.
Is my current treatment still appropriate for my changing MF?
Throughout your treatment for MF, you should ask yourself:
- Am I feeling more symptoms or feeling worse, despite my treatment?
- Am I feeling more tired or weaker than usual?
- Am I noticing unusual bruising and/or bleeding?
- Do I feel symptoms of spleen enlargement (eg, early fullness, abdominal discomfort, pain under left ribs)?
When talking to your doctor about your treatment, you can ask:
- Are my red blood cell or platelet counts lower than before?
- Could the changes in my blood cell counts be caused by my MF, my treatment, or both?
- Should I consider changing my treatment, and how might that help my situation?
- Why has my current therapy dosage been lowered?
Taking notes to share with your doctor can help you discuss how your symptoms have changed over the course of your MF treatment. Always talk to your doctor if you have any signs or symptoms that bother you or won’t go away.
IF YOUR MF HAS CHANGED SINCE DIAGNOSIS, WHY HASN’T YOUR TREATMENT? IT MAY BE TIME FOR VONJO.
