Prior to my husband’s recent diagnosis, we had never heard of myelofibrosis and don’t really understand what it means. I would like to learn more and know what to expect.A.
Learning a loved one has myelofibrosis (MF) can feel overwhelming. By reaching out for information and support, you are taking the first step in helping to manage and cope with this diagnosis. While no one knows precisely what causes MF, it is one of a group of disorders referred to as myeloproliferative neoplasms, or MPNs, and is a type of cancer sometimes referred to as a blood cancer or a bone marrow disorder. With myelofibrosis, the bone marrow doesn’t function properly causing a reduction in the amount of normal blood cells. The liver and spleen begin to make blood cells to compensate for this. In turn, this causes the liver and spleen to become enlarged and creates some of the symptoms such as abdominal pain, feeling full, weight loss, fatigue, itching, bone pain, and night sweats that people diagnosed with MF may experience.
It’s difficult to know how MF will affect your loved one, because symptoms and their intensity will vary, but there are several steps you and you husband can take to ensure you get the best care possible and continue to live a rewarding life. It’s important for you and your husband to communicate with your doctor and keep notes about and symptoms and side effects he experiences. Here are some practical suggestions to help guide the conversation:
- Create a file for all paperwork related to your husband’s diagnosis and medical appointments. Include copies of lab results and other important documents.
- Keep track of symptoms, their side effects and intensity.
- Keep a list of all medications he is taking.
- Create a list of questions you and he have for the doctor and their answers.
- During the appointment, make sure he has the opportunity to ask questions of his provider.
- Keep a calendar to record appointments.
Please refer to our fact sheet, “Doctor Can We Talk?” Tips for Communicating with Your Health Care Team for more information.
People coping with serious conditions may feel many strong emotions and it’s common to need extra support to help get through difficult times. Patients and family members can benefit from counseling. CancerCare services include telephone and online support groups for people with cancer and their loved ones. If you’re interested in learning more about our free support, call 800-813-HOPE (4673).
Myelofibrosis is the rarest of the MPN’s and this can make finding information and support more of a challenge. Fortunately, you don’t have to travel that road alone, and there are a number of groups that can assist. Visit the National Organization for Rare Diseases (NORD) or the MPN Research Foundation for more information.