A Profile of Hope—Nancy's Story

An interview with Nancy, Chapter President, diagnosed with indolent non-Hodgkin’s lymphoma…

My experience with Lymphoma

I was diagnosed with stage 4, indolent, follicular NHL at the age of 42 in August 2000; 60% of my bone marrow was affected.

While in a doctor's waiting room to obtain a second opinion, my husband found a brochure for an upcoming Lymphoma Research Foundation Educational Forum in Brooklyn in October. We decided to attend; we were hungry for a better understanding of my disease and treatment options.

After evaluating what we had learned and obtaining opinions from multiple lymphoma specialists, I chose to participate in an NCI Vaccine Clinical Trial (phase III) believing that this offered me my best chance for a cure. I received seven months of PACE chemotherapy at UPenn in Philadelphia (a participating center in the NCI trial.) Although I had a very good response to chemotherapy, I could not continue in the (blinded) vaccine phase of the trial due to a small but disqualifying amount of residual disease in my bone marrow. I was devastated. My disease was stable until April 2002 when CT scans showed progression of my lymphoma. I then received Rituxan therapy in June 2002.

I was thrilled when I learned Rituxan – a relatively new therapy, approved by the FDA in 1997 – put me into remission! I then received Rituxan maintenance therapy for two years.  Rituxan is a wonderful example of the revolutionary therapies that research has made possible. It is not a cure, but hopefully Rituxan will enable patients like me continue to manage their disease until a cure is found.

How I became involved with LRF

The Lymphoma Research Foundation has been instrumental in my personal lymphoma experience. The educational programs and materials have enabled me to make informed decisions about my treatment options and continue to keep me abreast of the latest developments. In September 2003, I helped to start the LRF Central New Jersey Chapter in order to extend LRF educational and patient services to the New Jersey lymphoma community, and to raise funds for research. Gaining momentum in newly formed chapters requires time and patience: to spread the word about the chapter; to learn how to serve the various needs and expectations of chapter members and the local lymphoma community; to combine various ages, levels of experience, and talents into a synergetic unit that works toward shared goals.

Start somewhere. You'll be surprised at what you can accomplish. Our first Central New Jersey Lymphomathon was held with a fundraising goal of $50K and just a handful of volunteers. We not only raised awareness about our organization and its services, we also raised over $70K for research and patient services!

We just celebrated our Chapter's third birthday and have raised a total of over $300,000 for research and a cure!

My life now

Leading researchers believe that a cure is within reach within the next 10 years. This gives me tremendous hope and has fueled my desire to try and make a difference toward that end. In addition to our work with the Chapter, my husband and I have also participated in Blood Cancer Advocacy Days in Washington, D.C. Although we have absolutely no political experience, we are learning how to use our collective voice to educate and influence decision makers on issues that affect the lymphoma community, such as funding collaborative approaches to blood cancer research and hastening the approval of promising new treatments. I strongly believe that working together - biologists, doctors, patients, families – we will help one another through this journey and we will turn our hope for a cure into a reality.

It has been a challenge for me to accept that lymphoma will be part of my life for the rest of my life. I continually derive great strength and perspective from the patients that I meet. Being an active participant with them has helped me to integrate lymphoma into my life and move on. Volunteering gives me the flexibility to contribute when possible while nurturing my health and continuing treatment as necessary.

Be thankful for the love and support of family and friends. Appreciate medical science, the talent of researchers, and the dedication of our doctors. And above all – never ever lose hope!

Learn more about LRF's Chapters.

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If you answered yes to one or both questions, join a chapter, become an advocate and/or make a donation.