The Story of Yaron

I was working on the last chapters of Ben Williams’ guide when I was contacted by Yaron who told me his story and gave me permission to tell it to you. I therefore decided to do it immediately also because there is a real need for stories like this one.

In April 2003, Yaron was at the peak of his research career at the Michael Smith Genome Sciences Center (GSC) having played a key role in the research that led to and publish the complete SARS coronavirus genome sequence. Ten months later, on February 23, 2004, his life changed forever. Following an epileptic attack, he was diagnosed with Glioblastoma Multiforme (GBM). Yaron had to deal with the fact that he had cancer with an average life expectancy of 13-15 months.

Surgery to remove the tumour in Yaron’s case was considered too risky given the location of the lesion which was deep and therefore Yaron could only do chemotherapy with Temodar and radiotherapy. Yaron didn’t give up, took a long break from work to get treatments continued cheering on his hockey team that won the national championship that year, started a new relationship and ran a full marathon in Iceland only a year and a half after diagnosis.

While planning to return to work, in late 2005 Yaron had a recurrence and because the original chemotherapy rarely works a second time with GBM Yaron was offered participation in a clinical trial which however failed quickly and miserably. Glioblastoma Multiforme is very heterogeneous and any surviving chemotherapy-resistant cells multiply. The cancer of the recurrence is often genetically different from that of the first diagnosis.

Meanwhile, Yaron got married to the woman he had met the year before and the doctors tried, as a last hope, to reuse the Temozolomide that Yaron had taken in the initial phase of the treatment and miraculously the drug worked. Yaron started having tumor-free MRIs since September 2006.

Yaron returned to work and continued his research on various cancers including some brain tumours such as DIPG and oligodendroglioma. Yaron wrote and published software to analyse RNA sequence data and worked hard in various brain tumour patient support communities, became co-chair of the advisory committee for patients and family members of brain cancer patients, and coordinated different initiatives to raise funds to support research in this sector. In 2009, together with another survivor, he founded the Brainiacs team and participated in a 280km cycling race. Now Yaron has a beautiful daughter.

Many people over the years have contacted him to ask how and what he did to survive, hoping to hear specific things to apply to them, such as diets, foods, medications and supplements. Yaron’s answer has always been that we are all different and what works for one person may not work for another. In the end, his recipe was to fill himself with positive thoughts, keep fighting and hope for the therapies to work. Yaron’s Glioblastoma Multiforme had the IDH1 R132H mutation, the MGMT promoter status was mitigated and an age at diagnosis of 29 years which in the case of a GBM are all factors for a more favourable prognosis.

Yaron had some side effects from radiotherapy such as slightly doubled lateral vision in his left eye and a subdural hematoma for which he had to undergo neuro-surgery. The important thing however is that Yaron is still here with us and is still fighting to help glioblastoma patients and in the important work of raising awareness on the importance of finding a cure for this terrible tumour also through his website