How have survival rates and treatment plans changed due to recent advances in research and treatment?

Things have improved greatly on a continuum. In the late 1960s, virtually all the children with leukemia died. At that time, children would go into remission for long periods, but would usually relapse. In the 1970s, the periods of remission were greatly extended. And now, we can expect across the board to tell any parent who has a child with acute lymphocytic leukemia that their child has a 70% chance of being virtually cured. Most children today will grow up without the disease ever coming back. Overall prognosis depends on the type of disease. Now, we can take the children who were likely to do worse up to the level of the others, or better in some cases.

Can you describe recent advances in treatment?

Children with a type of leukemia called T-cell leukemia used to do much worse. Now, they do slightly better than average. The treatment for T-cell leukemia is more intensive, but the outcomes are better.

We are trying to increase our overall curve. We would like to see one hundred percent of children in remission, and we’re not there yet. We are also working to make treatments less toxic. Radiation levels and dose levels for chemotherapy have been reduced. New drugs are on the horizon, but have not yet been put into widespread use.

We hope to make greater strides with infants. We’re working to recognize subsets of children who are not likely to do as well, and we have new forms of therapy that we’re just beginning to use.

What are the best ways to communicate with children about their diagnosis?

As the disease has changed to a chronic condition that is often not fatal, our attitudes have changed. Talking about this disease is not such a dismal prospect. I also think people understand more about the disease, and may already have knowledge on how to tell their children about it. The main thing is to be honest with children. Children don’t come into this with preconceived ideas of what it means. Sometimes parents want to communicate with the children directly, and sometimes they want us to tell them. We usually tell them that they have a condition called leukemia, which is a problem with their blood cells, and describe what blood cells are. We tell them we’ll try to make things better. We have books with illustrations that can help make things clear for children. We use the terms for the disease right from the beginning, because the child will be hearing them often. And, we take the phases of treatment as they come. If children need chemotherapy that will make their hair fall out, it’s important to tell them that when they get to that point.

It’s also important to tell families that they will feel upset; that’s it’s okay to feel bad. If a mother is crying, I’ll explain to the child that it’s because she feels bad about the illness. Then hopefully the parent and child can talk to each other.

What are the most common forms of the disease? Are there early signs or symptoms parents should be aware of?

Leukemia isn’t something that you miss. There isn’t any proof so far that diagnosing the disease early on makes a difference in overall prognosis. The most common form of the disease is called acute lymphocytic leukemia, which accounts for 80% of cases. The other main form, 10-15% of cases, is acute myelogenous leukemia. Chronic myelogenous leukemia accounts for about 5% of cases.

What are the differences between lymphocytic and myeloid forms of leukemia?

Lymphocytic leukemia involves the lymphoid cells, and myelogenous involves the myeloid cells. Within the lymphoid cells, there are different types of cells: T cells and B cells, T helpers and T suppressors. The B cells go through many stages of development and leukemia can occur at any one of these stages. The significance of all this is that you need different forms of treatment for the myeloid and lymphoid forms of the disease. Outcomes for myeloid forms of the disease have not been as favorable, but are getting better.

What are the differences between Hodgkin’s and non-Hodgkin’s disease?

Both fall under the classification of lymphoma; both involve lymphoid tissue. Hodgkin’s disease is a specific form of lymphoma. Early on, there was Hodgkin’s disease, and lymphomas that weren’t Hodgkin’s disease, and that’s where the term non-Hodgkin’s came from. Both involve similar cells, and sometimes similar medications, although different combinations of drugs work better depending on the type of lymphoma.

What, if any, are the connections between power lines, electromagnetic fields and other environmental factors and leukemia?

For a while, electromagnetic fields were thought to be significant in causing leukemia. Some studies have suggested this. One small study in particular from Finland suggested a strong connection. But recently, other studies, including one last year in the Journal of Clinical Oncology, suggested that there was no connection between electromagnetic fields and the disease. So far there is not enough evidence to support a connection.

Which strategies can families can use to cope? Are there groups to contact for support?

Most of the support comes from the medical team. We have social workers and a child life specialist who provide support outside of the medical treatment we give. Sometimes parents want to participate in support groups, but more often they rely on our staff here at the center. Families here sometimes form a kind of support system on their own with other families.

What is unique about the Cedars Sinai Center?

I think all cancer centers have their own unique qualities. Ours is small and friendly, and has a consistency of service that other centers don’t offer. Families will usually see the same doctors and nurses every time they come here, and I think they feel the care is more personal. We offer a unique kind of service in that we’re an outpatient center. Patients like having the ability to come in at any time of the day or night.

by Heather Pitre