In some cases for myeloproliferative neoplasm (MPN) patients, the time will come when you may wish to take stock as treatment becomes less effective.
Sometimes there aren’t always easy answers when it comes to treating MPNs. If you or a friend or family member is diagnosed with advanced stages of myelofibrosis (MF) or has developed leukaemia, modern medicine may not be able to provide the answers.
People with advanced myelofibrosis (MF) 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, although since 2013 we are now beginning to have encouraging results for some JAK inhibitor trials. However, unfortunately some people with MF are not good candidates for either bone marrow transplant, using a JAK inhibitor or for enrolling on 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 such as bone marrow transplant.
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. We would encourage you to talk to your hospital team, your GP and those close to you in deciding what to do. There is also excellent help on other websites and links as listed below.