Laura, Marginal Zone Lymphoma
Laura, Marginal Zone Lymphoma
In late 2018, I was 60 years old and had been losing weight and working on getting into better shape. At Thanksgiving, my younger brother Gerry and I compared notes. He had been having great success with a modified low-carb plan. Over the next few months, I really thought my plan was working, and I had lost 25 pounds without feeling hungry. My brother’s diet was going well too.
I had lost enough weight that my pants were falling off me, and I had to buy new ones. But I noticed that the area around my lower rib cage didn’t look slimmer and instead looked bigger. I began to have no appetite and when I had my first drenching night sweat, I made an appointment to see my primary care doctor.
By the time of the appointment, the area under my rib cage was hard on the left side and it hurt to sleep on my left side. The doctor was immediately concerned and ordered blood tests and a CT scan that first day.
The next day, she told me that I likely had a type of lymphoma and scheduled me for a PET scan the next Tuesday.
The blood results said that I likely had marginal zone lymphoma or perhaps chronic lymphocytic leukemia. I told my husband, and I had the PET scan and was set up to see an oncologist that same afternoon.
My husband and I met with the oncologist and the doctor – after some confusion because he wasn’t familiar with splenic marginal zone lymphoma (SMZL) – prescribed a course of rituximab to begin four days later. The oncology nurse told me that usually, insurance approval takes two to three weeks, but they rushed it through because I was so sick.
My spleen was 25 centimeters – huge- and I was only able to eat a few bites at a time. I was so anemic that my heart rate was 110 beats a minute at rest and I had none of my usual energy. I lost six pounds in the week before treatment.
The rituximab treatment was a bit rough to start due to normal adverse reactions – dizziness, low blood pressure, high heart rate, numbness, and tingling – but the oncology nurses are well-versed in those reactions and were able to control the reactions so that I could complete the first day of treatment. There were four total scheduled, and each one provoked a small reaction.
After four treatments and a month’s wait, I had a follow-up PET scan and bloodwork and both showed that I had had a “complete response” to the treatment and was in what most patients call “remission.” This was fabulous news.
My first oncology experience wasn’t very good. The first oncologist that I saw told me that my SMZL was curable. However, Dr. Google had told me before the first oncology appointment that my marginal zone lymphoma, while treatable and “indolent”, was incurable.
I then sought a second opinion at Fred Hutchison Cancer Center in Seattle where it was confirmed as SMZL and confirmed as incurable.
I handled the treatments well and continued to work full-time in my banking job during treatment, in addition to my second job as a community college professor. Four weeks after treatment, I was again riding my bicycle five miles to my office and kayaking and hiking on the weekends.
But the hard part was facing up to having an incurable lymphoma. That it was indolent – not fast growing – and wasn’t likely to kill me right away wasn’t very reassuring. Some of the mortality statistics are scary and my wonderful oncologist always warned me that it could come back.
Finding the Lymphoma Research Foundation was a great resource.
I am an analyst by training and a researcher by nature, so I spent a lot of time researching clinical trials, outcomes, and treatments. Finding the Lymphoma Research Foundation was a great resource. It took me 12-18 months to get comfortable living with an incurable lymphoma and I found that knowing more about the condition helped me. Some people don’t like to know and don’t research and that’s totally fine: it’s a good way to handle it if that is your preference.
Because MZL is so rare, there is less research on it than the more common lymphomas like diffuse large B-cell lymphoma (DLBCL) or follicular lymphoma (FL), I found that talking to other MZL patients helped and it really helped if they were interested in research-based knowledge.
I formed an online support group for MZL patients and it has been very helpful giving back to the community. We now have over 600 members.
I am now over five years out from my lymphoma diagnosis, treatment, and remission status. I am very grateful for the wonderful treatment that I received and the fact that I can ride my bicycle, hike, and lift weights six to seven days a week and keep up with my normal activities in retirement.
I see my oncologist every six months and he assures me that if the MZL comes back, they have many new treatment options, many of which were made possible by research from the Foundation.
But the past few years have been rough in many ways. My husband of 40 years was diagnosed with multiple myeloma – another incurable blood cancer – and passed away only 11 months after diagnosis in 2022. And my baby brother Gerry, who also had really good luck losing weight, was diagnosed in 2019 with a third incurable blood cancer, myelofibrosis. It turns out that his success losing weight was also due to his blood cancer. My brother remains in good health and I’m hoping that he is one of the lucky ones.