How long do I have to live?

Upon first diagnosis, many people want to know what to expect and how long they may have to live. This is called a prognosis. This is not an easy question to answer. Each person is unique and each person’s disease is a bit different. The course of a bone marrow failure disease varies a lot from person to person. You may have only very mild symptoms. Or, you may have severe symptoms and need medicines or blood transfusions. Below are some guidelines based on the most current data available:

Aplastic Anemia

Today, with standard treatments, between 7 and 9 out of 10 aplastic anemia patients get better. Standard treatments include immunosuppressive therapy with antithymocyte globulin (ATG) and cyclosporine, or a bone marrow transplant. The chance for recovery depends on many factors, including how severe your case is and how you respond to treatment.

MDS

There are many different subtypes of MDS. These subtypes are based on tests of the blood and bone marrow. Identifying your MDS subtype is one of the key factors doctors use to both decide on the best treatment approach and make a prognosis (an educated guess about the likely course of your disease and how long your are likely to live).

To figure out a prognosis for a given patient, doctors will also use a prognostic scoring system. The most common one used today is the International Prognostic Scoring System, or IPSS for short. This system looks at three things: 1) chromosome changes in the bone marrow cells; 2) number of low blood counts; and 3) percentage of young white blood cells (blasts) in your bone marrow. This prognostic scoring system tells your doctor how severe your disease is and how likely it is that your MDS might become acute myeloid leukemia (AML). It also gives your doctor a general idea about and how long you are likely to live.

With current treatments, patients with lower-risk types of some MDS can live for 5 years or even longer. Patients with higher-risk MDS that becomes acute myeloid leukemia (AML) are likely to have a shorter life span. About 30 out of 100 MDS patients will develop AML.

PNH

Many people with PNH live for decades. People with PNH who develop blood clots in key parts of the body or develop MDS (mylodysplastic syndromes) or AML (acute myeloid leukemia), may have a shorter life span. New treatments are becoming available that are helping PNH patients live longer. You may have seen older literature saying that PNH patients live an average of 15 to 20 years after diagnosis. More recent research shows that lifespan has been steadily climbing over the past 20 years. It is even possible that people with PNH will have a lifespan that is normal compared with people their age. Fortunately MDS and AML are rare in people with PNH.

Whether you are an aplastic anemia, MDS or PNH patient it is important to talk with your doctor about your prognosis. This may be hard to hear, but getting a prognosis will give you key information you need to make treatment decisions and plan for the future.