8 Things Doctors Want You to Know About Leukemia

By Diana Rodriguez, CNN,

Advice from Leukemia Experts

There’s a lot to learn when you’re just diagnosed with leukemia: You’ll need to find the right doctor; learn about your treatment options; and find out what you can do to stay healthy. The more you know, the better off you are when it’s time to make decisions. You can start with the top things some of the country’s leukemia experts want you to know.

1. “Ask ‘What subtype do I have?’ “

“The important thing to recognize first off is how many different kinds of leukemia there are, and how very different the treatments are,” says Mark Levis, MD. “Sometimes, treatments are simple outpatient procedures. Other times, leukemia is a medical emergency and requires immediate admission to the hospital. And, there’s everything in between,” Dr. Levis says. Talk with your doctor about your specific type of leukemia and treatment so you know what to expect.

2. “Don’t worry too much about what you eat.”A healthy diet is important for overall health, but there’s no special diet you should follow to manage your leukemia, Dr. Levis says. You do have to be careful to avoid food-related illnesses. So, make sure all food is cooked thoroughly. Also, avoid buffets and food that’s been sitting out. “I don’t think there is any good data to support how you must eat,” he says. His advice: “You may do harm by attempting to modify your diet, so don’t change anything.” That said, it’s a good idea to eat a well-balanced diet with plenty of nutrients—and limit overly processed food.

3. “See a leukemia specialist.””It is critical to be seen by an expert who specializes in leukemia management,” says Naval Daver, MD. That’s because “…accurate diagnosis, selection of therapy, and decision to transplant play a very important role in determining outcomes.” You want a doctor who treats leukemia every day and knows the latest treatments. Dr. Daver suggests that everyone with a leukemia diagnosis get at least a consultation at a hospital designated as a leukemia “center of excellence.” For example, you might search “leukemia center of excellence” in your internet browser window.

4. “Family support is crucial.”Family members provide moral support in a tough time. “Acute leukemias are especially difficult to treat, and chemotherapy for these diseases takes a toll on the health,” Dr. Daver says. A loved one can also help you digest all of the information from the doctor, “…because it can be overwhelming,” says Jacqueline S. Garcia, MD. Stick to just one or two people, though. Bringing the whole family may be distracting.

5. “Write down questions.”You might feel emotional and nervous at your doctor’s appointments. There’s also a lot to discuss in a short time. Be prepared before you go to make the most of your time. Dr. Garcia also asks her patients to keep a notebook handy to jot down their appointments and write down questions and concerns.

6. “Seek out clinical trials.”Sometimes, the best way to get the newest treatment is by enrolling in a clinical trial. That might sound a little scary, but don’t be afraid to talk about it with your doctor. “People who participate in clinical trials survive longer than those who don’t, at least in leukemia,” Dr. Levis says. “Seek out clinical trials because the best therapies are available often in clinical trials.”

7. “Continue to exercise.””I suggest all patients continue to exercise, both at diagnosis and through their therapy for leukemia,” Dr. Daver says. That might be tough when you’re going through treatments like chemotherapy. But, it really can help you. Dr. Daver says research shows people with leukemia who exercise and stay active are less likely to get pneumonia or a blood clot. They also tend to do better overall.

8. “Don’t lose hope.”Try to stay positive about your prognosis and be an informed patient. Dr. Levis says: “Be very proactive. You have to be your own best advocate.” Ask a family member to help you stay on top of information, research treatment options, and ask questions. Also, don’t be afraid to question your doctor. You should ask questions to make sure you know about all possible treatment options, he adds. In fact, a second opinion on your condition from another leukemia specialist may give you peace of mind and help you with treatment decisions.