I was diagnosed with Stage III mantle cell lymphoma (MCL) in October of 2004 following a routine physical exam. I wasn’t feeling ill, but since I quit smoking many years ago, as a precaution, my primary care physician recommended having a computed tomography (CT) scan of my lungs to see if I had any residual damage.
I had a CT scan of my lungs and, within two days, my doctor called me at my office and I knew something was wrong. My doctor said my lungs were fine, but I had several swollen lymph nodes that were larger than they should be. I remember asking him what this meant, and he explained that typically when lymph nodes are swollen it means the body is defending itself or is under attack, and the natural immune system is fending off whatever illness that you may have. I also asked what some of the other possibilities were and if it could be lymphoma, but was told it was too early to use that word. He suggested I have another CT scan of the lower abdomen and a PET scan. I scheduled both tests the following week and both showed swollen lymph nodes.
“I was in total disbelief. I thought there was a mistake in the diagnosis.”
At that point, I was in total disbelief. I thought there was a mistake in the diagnosis because I wasn’t feeling ill or experiencing any weight loss or night sweats. I started getting fearful and started getting angry because I was at a point in my career where I didn’t want to have to go through the kinds of things that were probably going to occur if this was in fact lymphoma. The doctor suggested I have a lymph node in my armpit removed, which ended up being the size of a golf ball. After the surgery, I was home with my family discussing the events of the day when my surgeon called and told me I had mantle cell lymphoma. This was a very stressful time for me and my family, and my diagnosis affected everyone. I had to go on medical leave from my job and my wife, Cathy, had to go on caregiver leave from her job as a school teacher.
We decided to get a second opinion at a cancer center that was highly recommended, but was significantly further away (a 12-hour drive) because we wanted to be absolutely certain we had the right diagnosis before entering into a physically debilitating treatment program. The oncologist we met with confirmed my diagnosis as well as the treatment regimen the first medical center recommended, which was HyperCVAD (cyclophosphamide, vincristine, doxorubicin, dexamethasone alternating with methotrexate and cytarabine) with rituximab (Rituxan). He suggested I consider making my decision right away because he noticed a few more lymph nodes popping out of my neck, which meant the disease was progressing.
Cathy and I left the appointment and discussed the two treatment options in front of us. I could either have treatment at my local medical center or I could have treatment at the medical center that was further away. This would mean moving into an apartment and being away from our home and family for nine months while I underwent treatment. We decided to have the treatment done locally where, in between the rounds, I could recover at home and be in familiar surroundings. I had my first treatment in November of 2004 and I had my eighth and final treatment in June of 2005.
“I now appreciate life events more, and I have had the chance to see two of my daughters get married.”
My hematologist/oncologist was extremely thorough and I credit her for saving my life. After the first two rounds, I thought the treatment wasn’t really that bad. My hair didn’t fall out until after the second round, and even then I didn’t feel that bad. The subsequent treatments wore me down a little more and it was harder to recover. I remember my oncologist saying, “Bruce, we’re going to take you right to death’s door and then we’re going to reel you back in.” And that’s exactly what happened to me. I got more overwhelmed and more tired after each round of treatment, but I was fortunate and went into full remission after the fourth round, and that was when I was first starting to feel the cumulative effects of the rounds building up on me. As a result of the treatment, I experienced permanent nerve damage in my feet and now have neuropathy in the bottom of my feet and toes.
My advice for a newly diagnosed patient is to get ready for one of the most significant challenges of your life, whether it’s a chemotherapy protocol or it’s a stem cell transplant. You have a very challenging disease but with medical technology advancing as quickly as it has I’m living proof that this is a winnable battle. Although MCL is mostly an incurable disease, I’ve been in complete remission for over eight years.
I now appreciate life events more, and I have had the chance to see two of my daughters get married. We have also been blessed with four grandchildren and have another due in August. I retired from my job, which, when I first was diagnosed, I wasn’t sure I would make it to retirement or what my future was.
My first introduction to the Lymphoma Research Foundation (LRF) was through the resources we found at the medical center where I had my treatment. The medical center had a wonderful resource room offering brochures and booklets where we learned about services, including the different symposia we could attend to learn more about my disease. We participated in webcasts and podcasts to further understand the disease because we wanted to maximize our chance to win the battle. We also learned about financial aid resources and received reimbursement for some of the mileage we incurred driving to and from the medical center. This was very helpful because our income was lower due to our medical leave, but our expenses went up due to medical deductibles and travel expenses.
When I was first diagnosed, I didn’t know if I would make it through and I promised myself that I would help others if I had the chance, so now I volunteer and talk about my experience with other cancer patients through LRF’s Lymphoma Support Network. I’ve spoken with people from England, Florida, California, Arizona, and Australia. It is a wonderful way to get previous patients and current patients in touch with one another to discuss what the other will face, and what walking in those shoes may be like.