Myeloproliferative Disorders Support
End-of-life
You may wish to take stock as treatment becomes less effective.
There aren’t easy answers when it comes to treating myeloproliferative disorders. If you or a friend or family member is diagnosed with myelofibrosis or has developed leukaemia, modern medicine may not be able to provide the answers.
Options
People with advanced myelofibrosis can begin to find that blood transfusions and medications become less effective over time as bone fibrosis progresses. When this happens, the options include continuing with more frequent transfusions in combination with medication, the more aggressive option of bone marrow transplant, or the unproven approach of entering a drug trial. Sometimes, people with myelofibrosis are not good candidates for either bone marrow transplant or for enrolling in a drug trial. Some find their health is too fragile and they do not stand a good chance of surviving a very risky and difficult treatment.
Taking stock
If you or a loved one are in this situation, you may wish to think about what sort of medical care you prefer and how you would like your care to proceed, and if you have any particular wishes to share. Some people who are reaching the end of life find that it is a rich time, when they take stock and deepen connections with loved ones.
Resources
We recommend several excellent resources where you can learn more about end of life: the Mayo Clinic (US) Mayo Clinic and in the UK, Macmillan.
