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How Do I Know If My MPN Is Progressing?

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Published on May 13, 2015

In this “Ask the Expert” segment featuring Dr. Naval Daver from MD Anderson Cancer Center, a Patient Power MPN community member who is currently in watch and wait asks, “What are the signs of progression?”  Dr. Daver provides a detailed explanation of the three factors that are the indicators for deciding when to start treatment.

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Transcript | How Do I Know If My MPN Is Progressing?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

This “Ask the Expert” question came in from Laura, “I was diagnosed 6 years ago with primary myelofibrosis. I am JAK positive and was on ruxolitinib (Jakafi®) for 18 months, but I was taken off. My fatigue and pain have increased, but my labs are holding on low side but no intervention needed.  So I’m in watch and wait again. What are the signs of progression?”

Dr. Daver:

So the signs of progression usually are three things we look at. One is physical or clinical, which are probably the most important indicators to decide when to start treatment.

So if you have a clinical indication of either early satiety, abdominal distention, unintentional weight loss—and usually by that we mean 10 to 15 pounds in a month without trying—or significant night sweats, significant meaning maybe having three or four drenching night sweats which require a change of clothes maybe two or three times per night or high-grade fever with an unknown etiology. These are usually the clinical indicators of progressive PV or ET or myelofibrosis and would make a patient a candidate for potential treatment either with a JAK inhibitor or with a clinical trial.

The second thing we look at usually is on the laboratory evaluations. So if there is evidence of progressive leukocytosis—meaning their white count is progressively going upward or if there is evidence of thrombocytopenia or anemia—thrombocytopenia is when your platelets are low. Anemia is when your hemoglobin is dropping.

If you have any evidence of these—one or more of these indicators, high white count, low hemoglobin, low platelets, that could be an indication that the disease is progressing in the bone marrow resulting in decreased production of your blood counts and may be another indicator for treatment. And then the third thing we usually look at and more and more, we have started to follow this is the bone marrow because often we can see that the fibrosis in the bone marrow is increasing, or the blast percentage in the bone marrow is going up and even in a patient who does not have clinical symptoms or does not have leukocytosis, this could be an early indicator to either follow them more closely or to consider early intervention.

So I think these are the three major things that we look at to decide whether there is progression.            

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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