Living Well with a Myeloproliferative Neoplasm (MPN). Dr. Krisstina Gowin

(e.g., Tylenol and others).

      It’s important to contact your physician if you have:

      • Bleeding that soaks through the bandage or doesn’t stop with direct pressure.

      • A persistent fever.

      • Worsening pain or discomfort.

      • Swelling at the procedure site.

      • Increasing redness or drainage at the procedure site.

      When Is It Time to Change Treatments?

      As discussed, monitoring your disease is essential for evaluating treatments. Are they working effectively to manage symptoms? Do dosages need to be changed? Is disease progression being controlled? Is it time to change therapies?

      It can be difficult to understand why new treatments are being suggested by your healthcare team, especially if you feel fine on your current course of treatment. By understanding the reasons for changing therapies, you may feel more comfortable with the new treatment being recommended.

      There are a number of primary reasons why your healthcare team may recommend a change in therapy, including:

      • Your risk group has increased either by you getting older or by new developments in your health (such as a new blood clot, heart attack or stroke).

      • You are experiencing side effects from your current therapy.

      • Your blood counts are poorly controlled on your current therapy.

      • Your symptoms are poorly controlled on your current therapy.

      • Your spleen is increasing in size.

      • Your disease has advanced. As previously mentioned, MPNs are not distinct clinical entities, but rather a group of linked disorders. Therefore, there is a possibility of transformation from one diagnosis to another within the MPN spectrum. For example, a patient initially diagnosed with ET may develop post-ET myelofibrosis.

      (Note: There may be other reasons for changing therapies than those listed here. Any change in treatment should involve a thorough discussion with your healthcare provider.)

      While changing treatments may cause some anxiety, a thoughtful and thorough discussion with your healthcare team about the reasons for the change should help to ease your uncertainty. (See Chapter 6 for tips on communicating with your healthcare team.)

      Monitoring the MPN Symptom Burden

      Remember, as an MPN patient you may experience a wide range of symptoms which can impact your quality of life. Keeping track of how symptoms affect you day-to-day, ideally with a symptom diary (see Chapter 6), along with an MPN symptom assessment form (SAF) (see below), is the best way to monitor and treat the disease. By accurately tracking symptoms, you can discuss any changes with your healthcare team at each visit, allowing them to more effectively manage the disease and reduce its effects.

      Talk to your healthcare provider about the MPN SAF, and discuss how frequently you should be performing the assessment. Always remember to bring your MPN SAF forms and symptom diary to your office visits with your healthcare team. Your symptom information will be critical to making decisions regarding your treatment and detecting advancing disease early in its course.

      Myeloproliferative Neoplasm Symptom Assessment Form (Mpn-Saf)1

      (Recommended for assessment of symptom burden initially; then you may use the short version.)

      Circle the one number that describes, during the past week, how much difficulty you have had with each of the following symptoms: