Questions to ask: MDS and MPN (bone marrow disorders)
Diagnosis
- Do I have MDS, an MPN, or an overlap condition? Which type exactly?
- What is my risk score (IPSS-R, IPSS-M, DIPSS-plus, or MIPSS70), and what does it mean for me?
- What did my bone marrow biopsy and gene tests show?
- Do I have a JAK2, CALR, MPL, SF3B1, TP53, or other gene change?
- What is my risk of a blood clot, and what can I do to lower it?
- How likely is my condition to change into myelofibrosis or AML, and what signs should I watch for?
- Could my condition be inherited? Should my family members be tested?
- Should I see a specialist at a center with MDS, MPN, and transplant experience?
- Is a stem cell transplant something to think about now or later?
- Is there a clinical trial that fits me?
- What should my caregiver know about this condition?
Before
- What is the goal of treatment: better counts, fewer symptoms, slowing the disease, or cure?
- Is watching closely a safe choice for me right now?
- Why do you suggest this treatment, and what are the other options?
- How is it given, how often, and for how long?
- What side effects are most likely, and which ones mean I should call right away?
- What is my target hematocrit or platelet count?
- Should I take aspirin? Is it safe with my platelet count?
- How will treatment affect pregnancy plans or fertility?
- How often will I need blood tests or transfusions?
- How much will treatment cost, and who can help with insurance and medicine costs?
- How can my caregiver help, and what should they watch for?
During
- Is the treatment working? Which numbers are you watching?
- How long should I wait to know if this medicine is helping?
- Are my blood counts safe for the next treatment?
- Do I need iron removal medicine because of transfusions?
- Is my spleen getting smaller?
- Can my side effects be managed with a dose change?
- Which of my other medicines, supplements, or pain relievers are safe?
- What vaccines should I get, and which should I avoid?
- If this treatment stops working, what comes next?
- Who do I call after hours, and when should I go to the emergency room?
After
- How often will I need blood tests and checkups from now on?
- Which changes in my counts or symptoms would mean the disease is changing?
- If I had a transplant, what long-term follow-up and vaccines do I need?
- What long-term side effects should I watch for from my medicines?
- How can I keep my heart and blood vessels healthy to lower clot risk?
- Are there support groups or counseling for me and my family?
- What should I tell my other doctors and dentist about my condition?
Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.