- Diagnosed with: Primary CNS lymphoma
- Location: Ohio
- Navigator: Anna Willson
The advice I can offer to others is be thorough, do your own research, get help from professionals such as BTN, get prompt care from a well-qualified medical center that has all the necessary resources under one roof, ask any and all questions, stay positive, and never give up.”
Told by brother of patient
In February of 2018 at age 61 years, my brother began to have symptoms of confusion, lack of balance, and cognitive deficits. These symptoms gradually increased and by late March 2018, Roy was unable to remember the current day, month and year or how to use his cell phone. Thinking that he might be experiencing mini-strokes or dementia, he was taken to the local hospital for evaluation. The radiologist indicated that the results of the CT scan of his brain were inconclusive. At our family’s request, Roy was transferred to Ohio State University Medical Center where he was evaluated in the ER. An MRI of the brain revealed a Primary CNS Lymphoma. This diagnosis was a total shock to him and our entire family. He had never been really sick in his entire life. It was a frightening diagnosis at first, which prompted all of us to think the worst was at hand.
Roy came under the care of the James Cancer Center at Ohio State University Medical Center where a biopsy confirmed his diagnosis. The neuro-oncologists at the James Cancer Center recommended chemotherapy of Methotrexate, Rituximab, and Procarbazine. The treatment regimen began within 30 days of diagnosis, which we understood was crucial. By chemo cycle 2, Roy showed improvement of symptoms. Thankfully, he experienced no significant side effects such as nausea. By cycle 3, his symptoms had significantly improved and he was able to function pretty normally with almost no confusion, lack of balance, or obvious deficit. At the time I am writing this story, Roy has two more cycles of chemotherapy to complete. After that, consideration is being given to a stem cell transplant, which apparently offers the greatest opportunity for a cure or long-term survival.
In the very early stages of the diagnosis, our family spent time looking for supporting resources. We contacted the Brain Tumor Network (BTN) and were paired with Anna Willson, RN. Anna was experienced, very kind, compassionate, and helpful. She fully understood the stress we were under. We wanted to be thorough and concluded that for our peace of mind, it was important to get a second opinion even though our brother was at a major university teaching hospital. Anna provided several options and after consideration, our family decided on Memorial Sloan-Kettering (MSKCC) for our second opinion. Anna contacted MSKCC on our behalf, gathered all the necessary records and submitted those along with a very detailed case summary to MSKCC. Anna has maintained regular contact with our family throughout the second opinion process. We found the staff at MSKCC to be uniquely qualified and helpful. After my brother's case was reviewed by Dr. Wu, and the MSKCC tumor board, we received a telephone call followed by a written report detailing their analysis and recommendations.
While this time has clearly been a very disturbing period for our whole family, we are optimistic that Roy is receiving the best possible care. His odds of defeating this disease are good, even though there is still a long road ahead. We realize that there may be ups and downs in the recovery process.