Chronic Lymphocytic Leukemia Survivor
- Diagnosed with CLL at age 65
- Received no treatment until white blood cells reached 200,000
- Treated on a clinical trial, with great results in three months
In 1999, Richard Warburton had his prostate removed as treatment for prostate cancer. At that time, his surgeon realized his lymph nodes were enlarged and he was diagnosed with indolent chronic lymphocytic leukemia (CLL).
Leukemia is a cancer that disrupts the normal development of blood cells. Inside most of your bones is a soft spongy material called bone marrow where blood stem cells (immature blood cells) are made. A blood stem cell becomes one of two types of stem cells: myeloid or lymphoid, which mature into different kinds of blood cells.
Myeloid stems cells become red blood cells that carry oxygen to and from the tissues in your body; platelets that help your blood to clot to control bleeding; and infection-fighting white blood cells known as granulocytes.
Lymphoid stem cells become lymphoblasts, which mature into B lymphocytes (B cells), which produce antibodies that identify and destroy bacteria and viruses; T lymphocytes (T cells), which fight against viruses and stimulate B cells to produce antibodies; and Natural Killer (NK) cells, which kill tumor cells and disease-carrying microorganisms.
With CLL, lymphocytes stop maturing and don’t die off like normal lymphocytes. As a result these abnormal white blood cells slowly start to crowd out healthy red and white blood cells and platelets, preventing them from doing their jobs, which makes the person become anemic, or contract infections, and bleed easily.
“CLL is essentially an indolent B-cell non-Hodgkin lymphoma,” says Dr. Ajay Gopal, a medical oncologist at Seattle Cancer Care Alliance. “CLL has more of a blood/marrow manifestation. So, you’ll often hear CLL (chronic lymphocytic leukemia) called Small Lymphocytic Lymphoma (SLL).”
“I didn’t receive any treatment initially,” Richard recalls. “But I had my white blood cell count checked periodically and noticed that my counts were increasing about 2.3 percent per month, doubling in two years. By 2005, my counts were up to 200,000 (normal white blood cell counts are 4,500 to 10,000).”
Richard began to experience headaches, nausea, and hot flashes at night. Treatment for CLL starts with “watchful waiting,” especially when there are no symptoms, as was with Richard’s case.
Chemotherapy, immunotherapy, radiation, and bone marrow transplantation are currently used to treat CLL once it moves out of the “indolent” phase. But these options didn’t appeal to Richard because of their risk of side effects. So, he began looking online for information about CLL treatments. He searched the CLL Topics web site (www.clltopics.org), a non-profit organization that was created to help disseminate information about this disease. It was on this web site that Richard found Dr. Ajay Gopal, who was conducting a clinical trial for the treatment of CLL.
Clinical Trial for CLL
Fred Hutchinson Cancer Research Center Protocol 6071 (also known as NCI Protocol 6957) is a Phase I-II trial of a drug called fenretinide and rituximab for people who have B-cell lymphoma. The goal of this study, among other things, is to determine the response rates of fenretinide and rituximab in patients with this disease (and in Richard’s case, CLL) and then to be able to estimate the overall survival, progression-free survival, time to progression, disease-free survival, and PET responses of patients treated on this study.
Richard contacted Seattle Cancer Care Alliance and was evaluated by Dr. Gopal who signed Richard up for this study in April 2007.
“In less than three months, my white blood cell count was down to 100,000,” Richard says. “My symptoms went away and my physical abilities seemed to increase. Without treatment my white blood cell count could have risen to 400,000 by now (from the 200,000 it was at the start of the trial).”
The treatment Richard received began with fenretinide. The rituximab was added a few months later and caused his white blood cell count to bounce high and low a little before stabilizing at 35,000, where it has remained for the past two years, back to the levels Richard had in 2001.
“Most patients tolerate the therapy well with much fewer side effects than traditional chemotherapy,” says Dr. Gopal. “And some patients have had prolonged disease control.”
As of 2009, Richard takes rituximab every three months and fenretinide pills on a reduced dose three times a week. His white blood cell count continues to decline and his bone marrow biopsies, which he receives quarterly, have not changed. “My CLL appears to be more indolent than before,” Richard says.
Overall his health is good. His PSA’s are immeasurable since his surgery, so his prostate cancer is no longer a concern. And his CLL is under control and hasn’t affected his lifestyle, so Richard is happy.
“Dr. Gopal couldn’t have done a better job. He’s very forth-coming and provided excellent care. I would have preferred a complete cure, but at 75 years old, I’m happy to get 10 more years.”
Richard’s advice to other CLL patients is to be an advocate for yourself and be part of the decision-making process. His primary oncologist in his Oregon hometown hadn’t heard of Dr. Gopal’s trial. The current treatments for CLL come with side effects that he has not experienced on his current treatment course.
“Dr. Gopal is the only doctor I talked to who knew about CLL.org and the company and what they are doing,” Richard says. “I might not have known about or been able to participate in this trial otherwise.”
As of May 2012, Richard is doing well. On March 9, 2011 however, he had his left breast removed after a diagnosis of Paget's nipple disease, a rare type of cancer involving the skin of the nipple and areola. He had chemotherapy and radiation after that until January 2012 and now takes Tamoxifen daily.
"For the last few months, my blood counts have been normal, as the the cytoxan for my breast cancer really cleaned up my CLL at the same time," Richard says.
Richard will keep us posted...* This study is funded by the NCI and in part by CLL topics. It is not limited to CLL and the NCI supplies the fenreitinide for free.