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I’m going to live life to the fullest!

I’m going to live life to the fullest!

A lack of energy and feeling a bit ‘out of sorts’ were the first indications Caeleigh Hancock wasn’t at her best

Caeleigh Hancock and husband Ian hiking near some waterfalls
Caeleigh and her husband Ian enjoying a hike in the Sunshine Coast hinterland

She imagined she might be low in iron or something minor which could easily be remedied by a visit to her GP. Caeleigh had never heard of Polycythemia Rubra Vera (PV) when she was diagnosed in 2012 at 40 years of age.

At first her doctor thought the lab had made a mistake as PV is a rare illness more commonly affecting older males. Unfortunately a second round of blood tests confirmed the diagnosis and Caeleigh was immediately referred to a haematologist.

PV is a Myeloproliferative Neoplasm; a rare chronic disease which has no cure and carries the risk of developing into acute leukaemia.

“At the time I could hardly even pronounce the name of the condition let alone work out what it would mean for me health wise,” Caeleigh said.

“I’d read all sorts of things on the Internet about PV and thought worse case I may only live for a couple of years.

“It was very confusing and a little scary for me and my family but we took a great amount of comfort from the support and information supplied by the Leukaemia Foundation. Through them I’ve been able to form a support network with other blood cancer patients and access advice like how to combat the debilitating fatigue.”

People with PV have a high red cell count that puts them at higher risk of a heart attack, stroke and thrombosis.  It tends to be slowly progressive disease but there are treatments to reduce the risks.  Some people with PV also have high white cell and platelet counts and Caeleigh is one of them. This requires regular checks of her blood counts and from time to time having blood taken out to bring her red cell count down. Caeleigh also takes a low dose of a chemotherapy drug called Hydroxy Urea to bring blood counts down and a low dose of aspirin to reduce the risk of clotting.

Often the personal sacrifices that come with a chronic disease can be just as challenging as the physical symptoms. For Caeleigh sports and athletics were a big part of her life and she’s now had to come to terms with giving up her goal of getting into Masters Sports at an elite level. She’s also had to give up a job she really loves due to the long hours.

“Having a rare illness, I sometimes feel misunderstood. I don’t like to complain publicly though because in the scheme of what other people have gone through it seems pretty inconsequential,” she said.

‘The good thing is that right now I’m still able to work and do some of the active things that I’ve always loved, like jogging and playing hockey. I just have to be careful not to overdo it.”

“My husband, Ian and I have taken the attitude that we should try and live life to the fullest and get out and explore the world while I’m still well.”

Life-saving Hodgkin lymphoma treatment now available on PBS

Life-saving Hodgkin lymphoma treatment now available on PBS

Participants of two Leukaemia Foundation surveys have helped inform the Pharmaceutical Benefits Advisory Committee of the benefits of brentuximab vedotin, a potentially life-saving treatment for Australians diagnosed with a form of Hodgkin lymphoma*, supporting its listing on the PBS from April 1.

The PBS listing of brentuximab vedotin gives individuals with a rare sub-type of Hodgkin lymphoma access to potentially life-saving treatments that previously cost between $7,400 and $16,100 for a course.

Committed to improving the lives of people living with blood cancer the Leukaemia Foundation presented comprehensive consumer submissions to assist the Pharmaceutical Benefits Advisory Committee in its consideration of the two applications for brentuximab vedotin.

The Leukaemia Foundation undertook two surveys, the first in 2015 and another in 2016, seeking quality of life information from people living with relapsed or refractory Hodgkin lymphoma with 69 respondents providing insights into the severe and debilitating impact their diagnosis, or that of a loved one, had had on their life, work and career.

They also highlighted the significant inequities in accessing the latest available treatment with some people provided with the treatment on compassionate grounds while others had to raise substantial funds.

Those who could access brentuximab vedotin reported less disruption to their lifestyle as a result of fewer side-effects, that the treatment offered a bridge to transplant and the chance to stay alive and survive Hodgkin lymphoma.

Leukaemia Foundation of Australia CEO Bill Petch said the decision to list brentuximab vedotin on the PBS is truly wonderful news for people living with Hodgkin lymphoma and ensure equal access to the life-saving treatment for all Australians who require it.

“The PBS listing of brentuximab vedotin is wonderful news for people with Hodgkin lymphoma and this achievement demonstrates a successful united-front approach,” said Bill.

“Together we can help elevate the vital needs of people impacted by a blood cancer diagnosis and achieve great outcomes for more Australian families.”

Each year in Australian, around 600 people are diagnosed with Hodgkin lymphoma and while it can occur at any age, it is most common in adolescents and young adults.

For many, a diagnosis of Hodgkin lymphoma impacts on every single aspect of their life and a life-saving treatment like brentuximab vedotin can become, quite literally, a matter of life or death.

Annamaria Gregorace (pictured) of NSW was diagnosed with Hodgkin lymphoma at the age of 19. After chemotherapy and a stem cell transplant she enjoyed a couple of good years before relapsing in 2016. The Keynote 204 trial of brentuximab vedotin proved to be ‘the best treatment by a long shot’.

“I’m very excited to hear access to brentuimab vedotin has been expanded on the PBS,” said Annamaria.

“It proved to be such an easy treatment – and if it can work as well for others as it did for me – then this is a great result for people with Hodgkin lymphoma.”

For Jonathon Tarascio of Melbourne, Victoria, the whole experience of Hodgkin lymphoma has been ‘a rollercoaster ride” and an expensive one at that. Four cycles of brentuximab vedotin cost Jonathon (and his generous parents, extended family and friends) $42,000. It didn’t work but Jonathon is responding well to immunotherapy and he says it is important to keep trying and to be open to new therapies.

“The PBS listing of brentuximab vedotin not only gives Hodgkin lymphoma patients access to advanced treatments without financial limitations, but it also provides hope,” said Jonathon.

“Imagine, knowing there is a novel and relatively successful therapy available, but being denied access because it’s unaffordable.”

The Leukaemia Foundation is committed to improving the lives of people living with blood cancer and this is a great example of how collaboration is helping to make a real difference.

Help us to beat blood cancer by making a generous donation now.

*The listings are for the following two patient groups:
– patients with relapsed or refractory CD30 + Hodgkin lymphoma following autologous stem cell transplant (ASCT)
– patients with relapsed or refractory CD30 + Hodgkin lymphoma following at least two prior therapies when ASCT or multi-agent chemotherapy is not a treatment option.