It was a stressful journey, but Linda Trummer survived Stage IV mantle cell lymphoma. In 2015, she went to her primary care physician after discovering a lump on her jaw line. That led to a diagnosis of a slow-moving blood cancer, MALtoma. However, further tests revealed a lump under her left arm and the diagnosis was upgraded to Stage IV mantle cell lymphoma, a rare form of blood cancer. She underwent R-Hyper-CVAD, a multi-faceted chemotherapy regimen and just two months later was declared to have No Evidence of Disease. Linda still suffers from the many side effects of her regimen, but is happy to be alive, especially when her prognosis indicated she would only live for another 18 to 24 months.

Linda was close to 60 years of age when she first noticed a lump on her jaw line. She initially attributed it to her getting old, but when one day she saw the lump was growing, she sought medical attention. A PET scan showed that she had MALT lymphoma, also known as MALtoma, a cancer associated with the mucosa-associated lymphoid tissue. Linda switched oncologists and the second oncologist called for additional tests. They revealed a lump under her left arm, and she was diagnosed with Stage IV mantle cell lymphoma.

Linda was placed on a chemotherapy regimen which included rituximab, doxorubicin, cyclophosphamide, vincristine, dexamethasone and cytarabine. That was followed by six lumbar punctures of methotextrate.

Through it all, Linda Tremmer was an active patient. She sought to help other cancer patients on her floor by setting up an arts class. She also wrote poetry and with the aid of a cousin in Oregon, the poetry was set to music, which was played for the patients, who enjoyed getting care from a fellow cancer patient.

Linda’s regimen led to her being declared NED after two months, but she needed to stay on it and suffered from numerous side effects. She was placed on medication for depression and PTSD, although she says the latter rarely presents a problem. When she was diagnosed, Linda was told she would live another 18 to 24 months, and prepared to die. She sought palliative care and was placed in home hospice. She completed her will, set up cremation and wrote farewell letters to dear friends. But when she got to the 24-month mark, she realized she was still very much alive and started concentrating on living and not dying, which she said was much tougher than it sounds.

These days, Linda is happy to be alive, enjoys living with her three dogs and two cats, and advocates for cancer patients through the Leukemia & Lymphoma Society and has a support group on Facebook.

By way of advice, she says anyone diagnosed with mantle cell lymphoma should make sure they find an oncologist who knows how to treat mantle cell, which is much easier today than it was in 2015.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society https://www.lls.org