<div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>It's a deadly cancer with a complicated name and for too long there've been limited treatment options for sufferers, until now.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>An expensive new drug - the first of its kind for the disease - is now on the Pharmaceutical Benefits Scheme (PBS).</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Cheryl and Wayne Troy are united in fighting a cancer that rocked the New South Wales farmer and his extended family.</span></div></div><div><div id="adspot-mobile-medium"></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>READ MORE:</span></strong><span> </span><a href="https://www.9news.com.au/national/queensland-townsville-allegedly-armed-man-has-been-shot-dead-by-police/4a244e60-ebdb-4d15-a677-06e56d17a793"><strong><span>Armed man shot dead by police in Townsville</span></strong></a><span></span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>The 58 year-old grandfather's diagnosis came out of the blue.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"Wayne had pains in his kidney area and decided to go straight to the doctor," Cheryl said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"His kidneys were fine but they found something they weren't sure what it was in his liver."</span></div></div><div><div class="OUTBRAIN" data-reactroot="" data-src="//www.9news.com.au/national/pharmaceutical-benefits-scheme-cancer-drug-tibsovo-on-pbs-liver-cholangiocarcinoma/f9e66564-bf2f-4957-a29c-9b466afb835b" data-widget-id="AR_5"></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>It was cholangiocarcinoma, a cancer that starts in the bile ducts, part of the body's digestive system.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Steve Holmes from the Cholangiocarcinoma Foundation said it is a devastating cancer.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"It ruins families," he said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>READ MORE:</span></strong><span> </span><a href="https://www.9news.com.au/national/tasmania-election-2025-date-candidates-everything-to-know-explained/1f569dfd-2fc2-4460-a766-2bf809e731eb" rel="" target="" title="Tasmanian opposition leader makes bid to residents as they head to polls"><strong><span>Tasmanian opposition leader makes bid to residents as they head to polls</span></strong></a></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>A total of 1300 Australians are affected each year. It's silent and very difficult to treat, making it deadly.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"One of the things about this cancer is it does spread quickly and widely," Associate Professor Hao Wen Sim from St Vincent's Hospital said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"So the majority of patients will present with advanced, and incurable disease."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>For the past two years Wayne has been on a trial of an oral drug called Tibsovo.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Its been his saviour after enduring surgery, chemotherapy and trial immunotherapy.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>The drug targets a mutated enzyme, a key driver, that affects one-in-five patients.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>The tablets enable Wayne to continue to work without any side-effects.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"The last scan that was done everything was stable," he said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Sim said there is "about a 50 per cent reduction in the rate of death events, so quite a striking signal for this type of medication".</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>The treatment costs nearly $19,000 a month but now, with it's addition on the PBS list, patients only pay $31.60 a month or $7.70 on concession.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"90 patients we think every year, will get access to this new life-saving treatment which otherwise would've cost them around $125,000 for a course of treatment," Federal Health Minister Mark Butler said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Doctors say this has long been a neglected disease, so to have a targeted therapy widely available for the first time is a big advance.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"They've got a chance to survive, a chance to build hope and build a future again," Holmes said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><a href="https://www.9news.com.au/national/how-to-follow-9news-digital/29855bb1-ad3d-4c38-bc25-3cb52af1216f" target="_blank"><strong><em><span>DOWNLOAD THE 9NEWS APP</span></em></strong></a><strong><em><span>: Stay across all the latest in breaking news, sport, politics and the weather via our news app and get notifications sent straight to your smartphone. 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