Marwan, aged 26, was diagnosed with stage 4 alveolar rhabdomyosarcoma. He faced his cancer diagnosis like he faced everything else in life – a soldier. Sadly, Marwan never reached remission and died after 13 months and three lines of back to back nonstop chemo. A top medical student, he believed in the power of immunotherapy and while he got very close to trying ground-breaking CAR T cell therapy, it was heartbreakingly too late.
Marwan was a thriving, respected top medical student in St John’s, Newfoundland, Canada. He was passionate about his work and loved his patients even more. In March 2020, one week before the world shut down, he was diagnosed with stage 4 fusion positive alveolar rhabdomyosarcoma in his pelvis. When he was diagnosed, the cancer had spread to his lungs, multiple vertebrae along the spine and other bones throughout his body.
Prognosis was dismal and no words of encouragement ensued. Regardless, the chances weren’t 0% and as a family we decided to pursue conventional treatment which consists of some of the most brutal chemotherapy there is. His treatment was led from the Princess Margaret Cancer Centre in Toronto, Canada. He was told that as an adult, rhabdomyosarcoma is more aggressive and less responsive but nonetheless this was the best option for him. He was told adults cannot tolerate more than 10 cycles of chemotherapy, but Marwan soldiered on to take 14 cycles of VAC, 2 cycles of Irinotecan/vincristine and 1 cycle of etoposide/ifosfamide. All 17 cycles failed to tame the relentless beast.
Fever, neutropenia, fatigue, lack of appetite, nausea, vomiting, broken bones, back pain, emotional distress, COVID isolation, lonely hospital visits, even lonelier hospitalizations, watching the world move on, his future disappear, his body fall apart. Those are just SOME of the things he experienced fighting this monster.
Immunotherapy was our only option. A brave and compassionate doctor in China, Dr. Lung-Ji Chang was willing to treat Marwan as part of a clinical trial. We were told that patients with low disease burden respond the best and while Marwan was not the best candidate, we were out of options and he wanted to try a non chemotherapy option he believed in. We managed to get a VISA to China in the middle of a worldwide pandemic which in and of itself seemed like a miracle and finally we were so close to treatment.
Four days before he was supposed to receive a groundbreaking CAR T cell therapy an MRI scan showed a shocking 5cm metastasized tumor to the cerebellum that rendered the therapy more harm than good. Sadly, Marwan died without trying the CAR T cell therapy but with the full belief in its potential to heal future patients suffering with rhabdomyosarcoma.
By the end, Marwan’s primary tumor was gone but there were metastasis to the lungs, entire spine, ribs (of which he broke himself upon examining the rib), kidneys, soft tissue (too many spots to list), femur, colon, right eye and cerebellum. He died yes, but the cancer died with him too and for that we are grateful the suffering is done.
Hell is too kind of a word to describe what this journey was like. I am his sister and so I can only imagine what my parents felt and are feeling now with this gaping void. There are no good words other than it was desperation, love, pain, exhaustion, emotional torment all mixed into one and living one minute at a time knowing tomorrow may never come. We also knew that if it came, pain was guaranteed to join us hand in hand. Wanting it to end but not end all at the same time.
Marwan was adamant and clear – immunotherapy is the way forward. Chemotherapy is brutal and should not be offered to patients in an advanced stage. There is no quality of life on chemotherapy despite what some oncologists wish to believe. We need to do better. His dream was to be cured of this and to help pave the path for children to also use immunotherapy as the solution instead of poison, burning and cutting. Less harsh treatments, a move away from killing all cells and a focus on personalized immunotherapy for each cancer patient. In Marwan’s words, you can only beat cancer by fighting smarter not harder.
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A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
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