- 2 months ago
20 September 2021
Deborah Henderson was just 37 and working full-time when she was overcome with tiredness and diagnosed with pneumonia. The former senior BBC journalist and mother of three put it down to her lifestyle – what full-time working mother isn’t tired?
“Like many blood cancer patients, I didn’t recognise the symptoms,” she said. “I’ll never forget I was in the hospital struggling to breathe. I got sick so quickly. It was December 2010, just before Christmas.”
A British-Australian citizen, Henderson had recently immigrated to Melbourne after a highly successful journalism career in the UK. By the time she fell ill, she was mother to two sons aged six and four and a one-year-old daughter and, while she recovered from pneumonia, some months later she discovered a pea-sized lump in her neck. When she finally consulted a doctor, it was December 2011 and she was quickly referred to a haematologist.
A series of tests confirmed the unthinkable and, five days before Christmas in 2011, her diagnosis was confirmed – chronic lymphocytic leukaemia (CLL).
“I was devastated. I’d never had health issues – I’d done the cloth nappies, everything organic. I just couldn’t comprehend how I had something that was going to kill me. That Christmas I took thousands of photos thinking it could be my last.”
Although Henderson had a highly aggressive form of the disease, her doctors advised a ‘watch and wait’ approach, reserving bigger weapons such as chemotherapy for when it finally progressed.
“You’ve got an uphill battle and we want to keep you as well as possible for as long as possible,” she was told. “The clever thing about CLL is it becomes resistant to everything and, each time you relapse, your remission time will get shorter until you run out of treatment options.”
“That was pretty hard to hear, but I needed to hear it,” she says. “I’m a journalist so it immediately made me think, okay, I need information. There has to be a cure. There has to be something.”
The quest for a clinical trial
Henderson joined international patient forums, read medical journals and became an expert on her own disease. She even paid for genomic testing and found out her particular mutation did not respond well to chemotherapy. She struggled through to early 2013 when three cycles of a rituximab triple combination succeeded in putting her into remission – but only for six months.
“It was just coming back at me but again we went in to ‘watch and wait’. It was 2014 and I was getting sicker.”
Keen to get on a clinical trial believing it was her best chance at long-term survival, Henderson travelled to California to see a specialist who told her of a new drug being developed back in Australia and showing remarkable results.
Now known as venetoclax, it was unavailable to Australian patients but a chance meeting with a UK doctor at a conference in California turned out to be crucial. As long as she was prepared to travel to the UK, he was prepared to put her on a British trial for venetoclax.
“You’ll be one of the first patients in the UK to have it,” he told her. “I’m amazed that you haven’t been offered this in Australia.”
Moving to the UK, Henderson responded well and after seven months of living in London with her young family flying over for holidays, she moved back to Australia and commuted to London monthly to receive her trial supply. It did the trick. By December 2016, there was no sign of disease.
“I had a completely normal life on it – it was like taking Panadol,” she remarks. “It was incredible, really incredible. I flew to London for years until I got compassionate access in Australia but I was working full-time and life was normal, everything was working out.”
And then it came back. The relapse was slow at first and four cycles of rituximab in early 2019 again pushed the disease back. By this time, Henderson had been appointed to the Blood Cancer Taskforce and was speaking regularly about her experience and on behalf of patients, making her somewhat of a celebrity for blood cancer.
Deb’s CAR-T journey
An emerging cell therapy treatment called CAR-T caught her attention as it was working wonders for CLL patients in the US and Henderson wanted in. But to be accepted on a trial in Australia she needed to have first failed Janssen’s ibrutinib (Imbruvica), so in early 2020 she started on the BTK inhibitor – and responded beautifully. When offered CAR-T six months later, she was no longer sure she wanted it.
“I had very little disease but knew this might be my one and only chance to get CAR-T in Australia,” she says. “It was a version of Kymriah*, the same drug at an earlier stage, and I knew in America people who had CAR-T early did very well. I was third in the world to get it and it was the middle of COVID when my T-cells were harvested and sent to America.
“Eight weeks later they came back and Melbourne was in the middle of absolute COVID hell. The hospital systems were overwhelmed with Covid patients and it was a miracle I was getting CAR-T.
“It’s quite magical when they open the fridge and the treatment comes out. I know how expensive this is – it’s $600,000 just for the drug – and it’s just this tiny vial and I was like, is that it?”
It was 11 days later when she felt the impact of the treatment, suddenly overwhelmed with a raging fever and pain in her bones while watching AFL with her family.
“My bones felt like someone was stabbing them,” she says. “I was admitted to the high dependency ward at Royal Melbourne and given antibiotics and paracetamol. It was such a scary environment and I was really over it. I was in a lot of pain.
“It lasted 36 hours and it was an incredible experience. Once I got used to the pain, it was like I could feel the T-cells working their way through places where I knew I had disease – my neck would be sore for a few hours, then my cheekbone. It was like it was working its way around my body getting every last cell. It was incredibly exciting.
“On day 21 I returned home and life was completely normal. My blood tests were completely clear, my bone marrow completely clear. In March I came off ibrutinib and, for the first time in 10 years, I have no disease and no drugs. It’s now been exactly a year since I was infused and it’s incredibly exciting.”
Ambassador for all cancer patients
Just appointed to the Advisory Council for Cancer Australia, Henderson is now looking forward to making a difference for other cancer patients.
“I represent 110,000 blood cancer patients living with the disease every year in Australia on the Blood Cancer Taskforce but now I will be able to represent all cancer patients,” she says. “Thanks to wonderful doctors and clinical trials, I can now give back.
“It’s interesting being in a room primarily with doctors and scientists and say something that has not occurred to them because they’ve never walked in your shoes. That’s always a really nice feeling to be able to do that on behalf of all patients.
“The work we’ve done on the Blood Cancer Taskforce has given me huge insight into the systemic change that’s needed. It’s changing access to medicines and the availability of clinical trials and reducing the gap between urban and regional areas so they get access to the same level of healthcare. I’m passionate about patients being able to access the trials they want.
“I’ve probably gone to the greatest lengths to access a clinical trial of any patient in Australia having commuted for two and a half years to London. We’re looking at patients commuting from Mildura to Melbourne or Dubbo to Sydney – how do we make it easier?”
For Henderson, now is also a time when she can relax, no longer fighting just to stay alive.
“This is the first time I’m not looking for the next thing,” she says. “If this has not cured me it has at least enabled me to get to the only point I’ve ever wanted to get to – seeing my children become adults.”
*Kymriah is a CAR-T approved for use in some Australian patients. A number of CAR-Ts are in clinical trials in Australia across a range of cancers. Patients should discuss such options with their specialists as part of their treatment plan.