Recovery could rewrite leukemia treatment rules By Adam Cresswell

Natalie Langworthy still shudders to recall the day, barely five months ago, when her Sydney doctors warned she would probably not live to see her daughter Elkie's second birthday.

                                                                                     Picture: Michael Hughes Source: Supplied

                   Leukemia survivor Natalie Langworthy with daughter Elkie in Wurzburg, Germany.

 Until then, the normally irrepressible 34-year-old had assumed that the bone marrow transplant she'd received to treat her aggressive leukemia was going to see off the cancer proliferating through her blood.

 But that day is now firming as the lowest point in what has since been a remarkable recovery, thanks to an experimental new drug that has helped her not merely pull back from death's door, but also resume many of the activities young mothers take for granted.

 "I feel so much better - some days I feel I can walk miles and miles, although I'm still rather slow," she says. "Some days I feel completely normal . . . I can play with my (19-month-old) daughter, and I feel I can pick her up - I feel like a normal mum again."

 The turnaround was possible only because her fiance, Andy Fairclough, refused to accept the dire prognosis, and trawled the internet, quizzing every expert he could contact, until he found a German doctor who was studying the effects of the drug on patients with acute lymphoblastic leukemia.

 After a fraught process to secure Natalie a place on the trial, and then to ensure she was well enough to travel to the German city of Wurzburg, her downward spiral has been replaced by a recovery that has matched the most optimistic expectations.

 Discharged from hospital in Germany just before Christmas, after leukemia cells could no longer be seen in her blood under a microscope, Natalie has since regained all but four of the 13kg she had shed - and has been declared free of cancer using the most sensitive molecular tests.

 From barely being able to stagger to the bathroom, she reached her doctor's target of walking a mile by Christmas Day, and has since been on regular walks up Wurzburg's hills.

 Her turnaround has not merely delighted and amazed her doctors, it could yet rewrite the rules for how leukemia is treated. Haematologist William Stevenson, who treated Ms Langworthy at Sydney's Royal North Shore Hospital before her trip to Germany, called her recovery "marvellous".

 "It's prudent not to make too many comments about the future . . . but she's had a remarkable response, given how aggressively her leukemia came back after her bone marrow transplant," he said.

 Ms Langworthy is one of only a handful of patients worldwide who have received the drug, blinatumomab, to treat such advanced acute lymphoblastic leukemia. The disease causes the body's bone marrow to churn out mutant white blood cells that are too immature to carry out their disease-fighting functions.

 Until now, the mainstay of treatment has been chemotherapy, a debilitating therapy that wipes out diseased and healthy cells alike, and painful bone marrow transplants.

 Blinatumomab works by alerting killer T-cells, part of the immune system's defences against invading organisms, to a protein expressed only by the mutant white blood cells - triggering the T-cells to destroy them.

 The next step in her treatment could be continuing with the remaining two courses of the five-cycle treatment with blinatumomab or another infusion of donated white blood cells to give a realistic shot at what only recently seemed a distant dream: a cure.

 Mr Fairclough said Natalie had "been given another chance at life" and paid tribute to the leader of the German trial, haematologist Max Topp. "He was the only one that said anything other than the worst . . . I have been hopeful ever since - now I am very much more hopeful."

 However, saving his fiance's life had come at a huge price, with an estimated pound stg. 60,000 ($96,372) donated by family and friends already eaten up on medical costs and accommodation. He and Professor Topp have now set up a charitable trust, the Save Natalie Foundation, that will support Natalie and other patients who stand to benefit from joining the Wurzburg trials.

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