Frequently Asked Questions

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Choose one device* (and one Web browser) you will use, and always use this device and browser when accessing the MPN10 site.

All of the data you enter, including your symptom scores and blood test results, are stored† on the device you are using.

Do not delete your browsing data; this will delete your previous entries. This means that you should not clear your history on the browser you use; otherwise you will lose the data you have previously entered.

* Device, meaning smartphone, tablet, or computer.

† Stored, meaning you always need to use the same device and Web browser to view your previous entries.

NOTE: Your personal health information remains on your device only, unless you choose to share it with your healthcare provider via the email option.

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You may use the PV Tracker however often is necessary to effectively track your disease and communicate with your healthcare provider. For example, you may prefer to score your symptoms more often if you are newly diagnosed or have recently experienced a change in treatment.

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Since PV is characterised by uncontrolled cell growth, most haematologists and cancer organisations do classify it as a blood cancer. However, it is important to remember that the symptoms and prognoses vary widely.

To learn more about PV, visit:

www.spotlightonmpn.com/patients/polycythaemia_vera/.

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The total symptom score is a numerical value between 0 and 100 that is calculated by adding up the individual symptom scores you entered into the MPN10 Symptom Tracker. While a higher TSS may indicate a more severe symptom burden, this number alone is not a full picture of your overall health. Speak with your healthcare provider if you have any questions or concerns about your TSS.

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When living with a chronic condition like PV, it is important that you take an active role in monitoring your symptoms and discussing changes with your healthcare provider. Tell your healthcare provider if any of your symptoms become worse or more challenging for you, since this may indicate the need for alternative care management approaches.

The following questions may help you discuss your symptoms with your healthcare provider:

  • Why is it important to track or monitor my symptoms?

  • Are some symptoms more important to track closely than others?

  • How can I tell if the symptoms are due to my PV or not?

  • What might it mean if my symptoms come and then appear to resolve?

  • How can I better manage or track improving or worsening symptoms?

  • What might worsening, or progressing, symptoms tell me about the status of my PV and my management options?

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Your lab test results may differ based on where your tests are performed. Speak with your healthcare provider to help you understand how to read your results.

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Your blood counts, particularly haematocrit (HCT), white blood cells (WBCs), haemoglobin (Hgb), and platelets, offer important information about the status of your polycythaemia vera (PV). Talk to your healthcare provider about your results after each blood test and discuss how your individual blood results compare with your target blood levels.

The following questions may help you discuss your blood counts with your healthcare provider:

  • What are my target levels for HCT and WBCs?

  • What are my management options if my HCT or WBCs are above the target level?

  • What other factors might influence my blood test results?

  • Why is it important to monitor my blood cell counts to keep PV controlled?

  • Why is it important to know if my blood cell counts are above the target level?

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Phlebotomy is a term commonly used to refer to a blood withdrawing procedure. This may also be referred to as a venesection. This procedure is done in order to reduce the volume of red blood cells in your blood, which can help control your haematocrit level.

Your healthcare provider may be able to offer some advice before undergoing a phlebotomy procedure, such as:

  • Drink water before and during a procedure to stay hydrated
  • Avoid caffeinated beverages before a procedure
  • Take a friend or loved one with you

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Phlebotomies can be an effective intervention to help manage HCT levels. If procedures are becoming inconvenient for you or you are experiencing any side effects, you may want to discuss alternative care management options with your healthcare provider.

You may want to discuss your management plan with your healthcare provider if there has been an increase or a decrease in phlebotomies.

The following questions may help you discuss your phlebotomies with your healthcare provider:

  • Why are phlebotomies a part of my PV treatment plan?

  • How often will I need a phlebotomy to maintain my target blood count levels?

  • What does it mean if I need more blood drawn during a phlebotomy visit?

  • What might needing more frequent or regular phlebotomies tell me about the status of my PV and my management options?

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  • How does my current disease management plan help control my symptoms?

  • How might my blood counts be associated with the symptoms I’m experiencing?

  • What lifestyle changes can I make to help ease my PV-related symptoms?

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Novartis has sponsored the creation of this tracker to help improve disease management for patients with polycythaemia vera. Starting with the validated MPN10 symptom assessment form, Novartis partnered with patient advocacy organisations and medical experts to ensure the additional functions in this tracker are a useful resource and help patients living with PV manage their disease. Novartis does not have access to any personal or identifying information of users, nor any of the data entered into the tracker.

This web application is intended for use as a resource and diary tracker for patients with polycythaemia vera. Information provided on this web application, including outputs from its interactive features, should not be considered an alternative to medical or management advice from your healthcare provider team.

This tool helps you track aspects of
your polycythaemia vera (PV), so you
are prepared for discussions with your
healthcare provider and have a record
of your disease status over time.

Score your symptom severity as often
as you would like. Enter your blood test
or phlebotomy results as needed, after
each procedure.