Why you MUST book in this one test once a year: Cancer survivor Elle Halliwell describes the ONLY symptom she had before being diagnosed with rare disease while pregnant
- Elle Halliwell went in for a blood test when a specialist confirmed she had cancer
- Two days after being delivered the news she discovered she was pregnant
- Doctors told Elle to terminate her pregnancy for best chance of survival
- But she resisted and instead decided to pursue treatment after giving birth
- She spoke to FEMAIL about staying on top of your health and daily medications
Journalist Elle Halliwell wasn’t expecting a visit to her family GP to be anything but ordinary when she went in to retrieve a medical certificate in April 2016.
The 37-year-old, who lives in Sydney’s Bondi Beach with her husband Nick Biasotto, was only stopping by for a back-to-work notation because she’d been off with a stomach bug for a few days.
As she had been doing for a number of years before, Elle also picked up a script to organise her yearly blood test. She had been discussing the idea of starting a family with Nick and wanted to check her levels were within a normal range to start trying.
‘I mainly wanted to check my folate levels. The results came back and said I had high platelets, which isn’t uncommon if you’ve had gastro,’ she told FEMAIL.
‘My doctor wasn’t worried but we ordered another test anyway. The second test revealed the platelets were even higher, so he asked for a specialist to take a look.
‘Aside from feeling a little bit tired, which I had put down to work, nothing but that blood test would have prepared me for what happened next.’
Elle Halliwell (pictured) wasn’t expecting a visit to her family GP to be anything but ordinary when she went in to retrieve a medical certificate in April 2016 but it changed her life forever
The 37-year-old, who lives in Sydney’s Bondi Beach with her husband Nick Biasotto (pictured), was only stopping by for a back-to-work notation at the GP because she’d been off with a stomach bug for a few days – but she ordered a blood test to kill two birds with one stone
Elle had to wait five weeks for an appointment with the specialist and regrettably another three weeks for the results from further testing. But her results for this third round of tests came earlier than expected.
‘The receptionist who called me [on a Thursday] said I needed to come in on Monday. She said I needed to bring a loved one to discuss the results,’ Elle explained.
She added for clarity: ‘They don’t ask you to bring in a loved one unless you’re dying’.
Her stomach bug long forgotten, Elle got in contact with her GP again to try and get some more information. Four days was a long time to wait for the worst news of your life.
That’s when she heard the acronym CML for the first time.
‘I have chronic myeloid leukaemia. It affects your blood and bone marrow. It’s most commonly diagnosed in men over the age of 60. Not women my age,’ she said.
Elle described the ‘horror’ phone call she received from the specialist’s office: ‘They don’t ask you to bring in a loved one unless you’re dying’
What is chronic myeloid leukaemia?
Chronic myeloid leukaemia (CML) is a type of cancer that affects the blood and bone marrow.
In CML the bone marrow produces too many white cells, called granulocytes.
These cells (sometimes called blasts or leukaemic blasts) gradually crowd the bone marrow, interfering with normal blood cell production.
They also spill out of the bone marrow and circulate around the body in the bloodstream.
Because they are not fully mature, they are unable to work properly to fight infections.
Over time, a shortage of red cells and platelets can cause anaemia, bleeding and bruising.
Source: Leukaemia.org.au
Two days later and a spare pregnancy test in her hand, Elle discovered she was pregnant.
‘In 48 hours I had found out the best and worst news you can hear in a lifetime,’ she said.
It’s common for CML patients not to have any symptoms at all in the early stages – which is when Elle was diagnosed – but she does think some of the ‘tiredness’ she put down to being career-driven might have been the cancer.
When her Monday specialist appointment rolled around, Elle was somewhat prepared for the news. But not for the fact her new doctor urged her to terminate the pregnancy.
Her best course of action was to start an oral chemotherapy drug called a TKI straightaway but it’s not known what the effects on an unborn child would be.
So Elle, faced with an impossible choice, decided to wait. She waited nine months for her son Tor Felix to be born.
‘I had fortnightly check ups and tests to see how I was progressing,’ she said of her chemo-free pregnancy.
Two days later and a spare pregnancy test in her hand, Elle discovered she was pregnant (pictured). Doctors called on her to terminate the baby but she decided against it
What are the symptoms?
Elle believes come of the tiredness and ‘feeling rundown’ she was experiencing prior to her diagnosis may have been due to the cancer and not her work.
Because CML develops slowly many people don’t have any symptoms (particularly in the early stages) and the disease is picked up on a routine blood test.
As the disease progresses, symptoms arise from the increasing number of abnormal blood cells in the bone marrow and blood, and the decreasing number of normal blood cells. Possible symptoms may include:
* anaemia, due to a lack of red cells and causing persistent tiredness, dizziness, paleness, or shortness of breath when physically active
* increased or unexplained bleeding or bruising, due to a very low platelet count
* frequent or repeated infections and slow healing, due to a lack of normal white blood cells
* pain or discomfort under the ribs on the left side, due to an enlarged spleen
* excessive sweating or unintentional weight loss.
‘It’s a disease that doesn’t normally affect women at conceiving age. There weren’t many other cases like mine. We didn’t know how it had progressed or how long I’d had it.
‘There was a treatment that had been used up until these TKIs. It wasn’t perfect but it didn’t cross the placenta. It involved getting an injection once a week in the third trimester. So that’s what I did.’
Elle was induced a month before she reached full-term because her leukaemia marker levels – the amount of cancer in her blood – had increased.
After Tor was born in December Elle decided to push back her TKIs by another five weeks so she could breastfeed her newborn son. Then the real fight began.
Elle decided on a different treatment plan while she was pregnant to avoid hurting her baby
After Tor was born in December Elle decided to push back her TKIs by another five weeks so she could breastfeed her newborn son
‘Those five weeks gave me time to settle into motherhood. It gave me peace of mind, and thankfully, my levels had dropped again so the doctors agreed,’ she said
‘Those five weeks gave me time to settle into motherhood. It gave me peace of mind, and thankfully, my levels had dropped again so the doctors agreed,’ she said.
Tor will be in Year One at school next year.
These past six years have seen Elle get into remission and fall out of it again. She has tried to get off her daily medication when her blood has shown no signs of cancer only for it to return and the treatment to resume.
‘I thought I’d be one of the 50 per cent of people who could eventually stop treatment and remain in remission, but unfortunately it’s not looking promising for me. I’m seeing a return of the cancer cells, and am now getting blood tests every two weeks to monitor the progression,’ she wrote on Instagram in 2020.
Tor Felix (left) will be in Year One at school next year (pictured with Elle)
Elle shares what helped during her initial diagnosis:
1. Make sure you schedule in a once-yearly blood test to check your levels and ensure they’re ‘normal’ for you.
2. If you’re going to receive bad news from a doctor, ensure you record them on your smartphone. You won’t remember half the things they’ll say so it’s better to listen to it later when the shock has worn off.
3. Use the Cancer Council’s 13 11 20 Information and Support line for extra knowledge rather than random websites you can find yourself on Google.
‘I’m surprised to feel a profound sense of shame about this. Shame because I feel like I must be doing something to let my body down, despite trying to live as healthy a life as I can.’
While her CML diagnosis has had its ‘ups and downs’, prior to the creation of the oral chemotherapy drug she relies on, the average life expectancy for Aussies with this bone cancer was three to five years.
Elle is already at six.
‘I feel so lucky there was a treatment developed in the late 1990s. Unfortunately I do have to be on it for the foreseeable future,’ she said.
‘I’m grateful that in Australia this medication is subsidised. I take two pills twice a day and have to fast before and after it.
While her CML diagnosis has had its ‘ups and downs’ prior to the creation of the oral chemotherapy drug she relies on, the average life expectancy for Aussies with this bone cancer was three to five years
‘It does affect my quality of life to an extent but it’s certainly better than the alternative.’
At the time of publication in 2022 Elle has no detectable blood cancer cells in her body.
From October 13 there will be a bright yellow phone box positioned in Sydney’s QVB Forecourt to raise awareness of Cancer Council NSW’s Here For Life campaign, a campaign highlighting their vital 13 11 20 Information and Support Service.
The number is operated by healthcare professionals who can answer questions, offer support, or signpost to other vital cancer services.
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