Larry, Mantle Cell Lymphoma Survivor

In 2008 I went in for a routine colonoscopy. Several days after the exam, my doctor called me while I was in my office and told me that biopsies taken during the exam indicated that I had mantle cell lymphoma (MCL).

I was 48 years old, a father, a husband, and quite busy with my career. I did not know anything about lymphoma and was uncertain what the future would hold. My wife and I were quite upset when we learned about the challenges associated with a condition like mantle cell lymphoma. What was lymphoma? Would I be able to continue to perform my job responsibilities in my position at a bank? And most importantly, would I continue to be able to be a good father to my two teenagers and a husband? Frankly, I felt extremely anxious and was unsure of where to turn for advice or information.

Following a conversation with my internist, I was sent to a cancer center for recommendations for a treatment regimen. At the center, the doctors suggested that I be given several rounds of a chemotherapy regimen called RCHOP (rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone), and several rounds of RICE (rituximab, ifosfamide, carboplatin, and etoposide}, followed by an autologous stem cell transplant.

“I decided that ‘watch and wait’ was the best option for me at the time to help me maintain my same quality of life.”

At that point, I was in otherwise great health and was experiencing no symptoms from the lymphoma. While part of me wanted to be rid of this disease, I was also concerned about the impact that side effects could have on me, my family, and my career. I decided to seek a second opinion to see if I had any other options and this time, the doctor suggested I be placed on “watch and wait” or “active surveillance.”

Ultimately, I decided that “watch and wait” was the best option for me at the time to help me maintain my same quality of life. However, in 2011 (three years after my initial diagnosis), it became clear to me that my MCL was affecting my health. I had lost 15 pounds, my hemoglobin had become extremely low, and I was told I needed a blood transfusion, and most significantly, I easily tired when walking up to any hills or even during the walk to my office from the train station. After consulting with my healthcare team, my doctor offered me an opportunity to participate in a clinical trial examining the combination of the drugs rituximab and lenalidomide. After consulting with a third oncologist, I decided to sign up for the clinical trial. I believed the clinical trial offered me a realistic chance of achieving remission while continuing to fulfill my responsibilities and live my life with minimal disruption. I also was told that if the trial did not work for me, I could then switch treatments to one of the more standard chemo regimens, such as R/B (rituximab and bendamustine).

During the first three months of the clinical trial, I experienced a loss of taste, a rash over a significant portion of my body, and a night of a high fever (over 104). In early 2013, I received the incredible news that the clinical trial was effective, and I was finally in remission. To this day, I continue to take lenalidomide to control my MCL, but since it is an oral therapy I can take it at home, making it much more convenient for me to lead a normal everyday life.

“My advice to all lymphoma patients is to seek support from their family, friends, and doctors.”

Receiving a lymphoma diagnosis is a life-changing event and can at times even feel isolating. My advice to all lymphoma patients is to seek support from their family, friends, and doctors. It is important to have a community of people you feel comfortable with and can lean on when you need help. For me, my wife and children have been fabulous sources of support during my lymphoma journey, and I wouldn’t have been able to navigate it without them. I also suggest that you take the time to learn as much as you can about your diagnosis and choose a course of treatment that makes the most sense for your own circumstances. LRF’s resources were particularly helpful to me as I was learning more about lymphoma. Shortly after receiving my diagnosis, LRF paired me with another MCL patient, through their Lymphoma Support Network, who was a great resource and offered hope for my own future with this disease. I have also found the information I have obtained at LRF Conferences to be invaluable.

One thing that should give us all hope is the pace of lymphoma research and the advancements in the treatment of this disease. During my last 13 years as a part of the lymphoma community, I have seen exciting developments being made that give me confidence that there is a promising future ahead for all those impacted by this disease.