Mirjam's story

Last updated: 13 October 2022

Mirjam's story

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Mirjam is a dedicated sportswoman, an avid reader, director of several elementary schools, married and a mother of two boys. In March 2014, at the age of 39, she was diagnosed with B-cell non-Hodgkin lymphoma (an aggressive fast-growing cancer).

Her physician told her that 70–80% of patients respond well to conventional medicines. At first, Mirjam responded well to the chemotherapy, but this didn't last and her cancer progressed. She tried other treatments, including chemotherapy and various immunotherapies. Had the tumour been small enough she might be able to receive a stem-cell transplant, but it wasn’t, and so she was running out of options. Her physician suggested a novel immunotherapy that was not yet approved for non-Hodgkin lymphoma. They tried to join clinical trial but were unsuccessful. It looked like the end of the road for Mirjam.

Thankfully, it wasn't. Mirjam refused to give up, and after contacting patient advocates learned that the medicine she wanted so badly could be delivered to her from the US. Her physician would need to prescribe it, and she would have to pay for the medicine herself, but it was possible.

Unexpectedly, the physician wouldn't prescribe the medicine, as hadn't been approved in Europe yet. But "no" wasn't an option for Mirjam; she found another physician who was willing to prescribe the immunotherapy whilst abiding by the European regulations. Within 2 months, her sisters raised € 45,000 from friends and family. Mirjam could finally try this new treatment.

Mirjam's body responded well to the immunotherapy. Within a few days, she was feeling better. More importantly, the tumour shrank rapidly, to such an extent that she was able to qualify for a stem-cell transplant. Today Mirjam is still alive, in good health and grateful to all who helped her.

Mirjam's advice? "We're living in a fast changing world – a "no" can become a "yes" in a day. One physician said no, and whilst another said yes. Don't take no for an answer."