Wednesday, September 5, 2012


Saturday, Sept. 15 is a meaningful day for all lymphoma patients, survivors and their loved ones. It’s World Lymphoma Awareness Day, which was initiated in 2004 to raise public awareness worldwide of both Hodgkin’s and non-Hodgkin’s lymphoma.

As a patient advocate and 16-year survivor of stage four non-Hodgkin’s lymphoma, I’d like to take a moment as this special day approaches to urge everyone out there like me who has battled cancer or knows someone who has to please do whatever you can to spread the word about the need for more research and more treatment options for patients. 

Some quick background: Hodgkin’s and non-Hodgkin’s lymphoma are, like leukemia and multiple myeloma, blood cancers. They attack the blood, bone marrow, or lymphatic system, which helps the immune system remove and destroy pathogens, toxins, and cancer cells.

Non-Hodgkin’s lymphoma, also known as NHL, is the most common blood cancer. It starts in the lymphocytes, a type of white blood cell found in the lymph nodes and other lymphoid tissues such as the spleen and bone marrow.

I was diagnosed with follicular, the most common type of NHL, in 1999 and was treated with a type of chemotherapy called CHOP, then treated two years later with radio-immunotherapy, also known as RIT. I am very happy and fortunate to be alive. But if my cancer returns, there are few options for me.

Bottom line? We still do not have a cure for non-Hodgkin’s lymphoma.

Research over the past two decades has come up with a variety of new and effective treatments and another  generation of promising therapies are being tested as we speak, including second- and third-generation monoclonal antibodies along with some promising vaccines.

In spite of all this good news, we patients need more treatment options, more clinical trials, more hope.

In the short term, one of the most important things we should be focusing on is the unmet needs of third-, fourth- and fifth-line NHL patients, for whom there is no approved therapy in the United States.

This issue obviously hits home for me. My cancer could return at any time, and I want options. We all do.

There is one clinical trial currently open for third-, fourth- and fifth-line patients with diffuse large B-cell lymphoma (DLBCL) who’ve relapsed after therapy with CHOP-R (chemotherapy and Rituxan) or an equivalent regimen and are ineligible for stem cell transplant. 

You can learn more information about that trial at this link

Finding a cure is obviously the ultimate goal, but people who’ve failed previous treatments need more options. And these patients don’t have the luxury of waiting for new drugs to be discovered in the lab and make their way to your cancer clinic.

We need more research, and we need more treatment options. Please help me spread the word. Tell a friend. Tell a loved one. Tell a neighbor. Post this blog link, or write your own. Put an ad in the paper. Tweet your followers. Tell your doctor. And contact the members of Congress in your area.

And if you can, please support the patient educational symposium, Follicular Lymphoma: On the Road to Cure, which happens on World Lymphoma Awareness Day in Chicago at Rush University Medical Center, 1725 W. Harrison Street (between Wood & S. Paulina), Chicago, IL 60612.

Let’s make a difference!


  1. Well said Jamie! For anyone who is interested, Chicago Blood Cancer Foundation, Rush, and Hope for Lymphoma are holding a free patient and caregiver educational syposium called "Follicular Lymphoma: On the Road to Cure." There will be 10 leading doctors on hand and people can join us live in Chicago or tune in on the web. For information visit,

  2. yep, it's mentioned above. very important!