by Marcy Worthington, Charla Billick, Christine Kelly Kennedy and multiple contributions from members of the Polycythemia Vera Supportive Friends Support Group
When we have an appointment scheduled with our doctor (hopefully an MPN Specialist at some point) it is helpful to have a list of questions to be properly prepared. It also helps to know what to expect as far as PV Symptoms you may experience. Here is a checklist you can use and symptoms you may experience as a normal part of having PV.
- How often will I be getting CBC’s and seeing you?
- At what levels do you want to keep my HCT, HGB, WBC, platelets?
- Have you treated people who have PV with anything other than phlebotomies and aspirin or hydroxyurea?
- Are you open to using Pegasys, Peg Intron, and or traditional interferon?
- Would you consider using Jakafi, or a combination of Jakafi and Pegasys?
- Do you participate in trials?
- Will you order a BMB at some point? If so what will trigger it being done?
- Will you test me for JAK2 V617F variant, EXON 12 and new variants when discovered by researchers?
- If I am PV secondary what tests will you be preforming to find cause?
- Will you be willing to coordinate with an MPN expert if I consult with one?
- How do you treat the itching associated with PV?
- Fatigue – Living with PV Fatigue, 9 Tips to Reduce Fatigue
- Gout or uric acid – Gout symptoms
- Itching / dry skin – Might want to try the Z and Z combo for itching, more on itching – Polycythemia vera-associated pruritus and its management
- Brain fog and memory issues
- Long bone pain – Bone and joint pain in MPN explained
- Red face, flushing, hot flashes and night sweats (most common in patients with Myelofibrosis, can be present in PV and ET patients)
- Insomnia – Check out these Tips for Better Sleep.
- Migraines and headaches
- Hands and feet burning, red and tingling – What is erythromelalgia?
- Anxiety, irritability and depression
- IBS and GERD
- Ringing in the ears (Tinnitus) – Tinnitus explained
- Restless leg syndrome / cramping
- Sensitive to hot and cold
- Blood clots – Blood clots explained
- Chest pain
by David Wallace
What Makes a Good Hematologist?
I think this discussion could take a two-pronged approach. If you live in a city that has an MPN expert (NYC, Dallas, Phoenix, Chicago, etc.) and he/she is your normal hematologist, then your expectations will be considerably higher.
The search for a good hematologist at the local level (in a small or mid size city) can be a challenging, sometimes frustrating journey. As a patient, we need to arm ourselves with the proper resources to make an informed decision on selecting a competent hematologist. PV Reporter, MPN Research Foundation, MPN Cancer Connection and numerous MPN Facebook support groups as well as email lists share a wealth of information.
A good hematologist begins with a doctor who talks to you on your level. One who will review the latest research and look beyond “old school textbook teachings” in a rapidly advancing world of new MPN discoveries. For example, I tend to be rather symptomatic when my HCT crosses 42, as opposed to 45 which was considered “the gold standard.” The presentation of a recent research report recommending a target HCT of 42 was enough for my doctor to consent to phlebotomy at this level. Working together in a collaborative environment where the patient can openly share research with his or her hematologist without the fear of rejection or intimidation is essential.
A good hematologist will openly discuss the risk / reward factors when he is prescribing medication or recommending a new treatment plan, that many times is a decision ultimately made by the patient (i.e – phlebotomy, HU, pegasys). If it is determined that cytoreduction therapy is needed, he should explain what factors led to the decision and be prepared to define treatment goals in a clear and concise fashion.
The hematologist should not be focused on entering symptomatic data into the computer (patient record) without talking to the patient directly, in an open and honest way. He should be willing to readily provide copies of test results and to proactively review results from the previous visit.
At the end of the day, if your needs as a patient are not being met, you should feel comfortable “firing your doctor” and seeking a more suitable partner for your MPN healthcare.