In 2020, homeschooling kids, running a baking business and living through another Melbourne Covid lockdown was the new normal for Tahli Batkilin.
Then she began experiencing strange health issues in late September that year.
“One day we decided to go for a walk along the beach and a few days later I noticed little red welts on my stomach and my back,” she recalls. “I assumed they were sandfly bites from sitting on the sand and didn’t really think anything of it.”
The welts didn’t go away, so Tahli visited her doctor who ordered blood tests and gave her some skin cream. The test results didn’t identify any issues and the welts went away. But a week later, Tahli developed extremely itchy skin.
I was scratching so much it basically looked like a werewolf had scratched me,” she says.
Her doctor prescribed stronger cream and the itchiness stopped.
By the end of October, Tahli was running out of breath while walking up the stairs but dismissed it as being unfit due to limited exercise during lockdown.
I also developed a really persistent dry cough to the point where I couldn’t even finish a sentence.
Her mum encouraged her to visit the doctor again, but Tahli said she was fine.
Then one morning, I remember looking in the mirror and thinking, ‘Oh, my skin looks really grey. I just look and feel so unwell’.
She made another doctor’s appointment.
An appointment at arm’s length
By the time Tahli reached the top of the clinic stairs, she was coughing and breathless. The doctor was worried she may have Covid and asked her to leave immediately and get tested.
I said, ‘I just need you to listen to my chest. That’s all.’ She basically did that from an arm’s distance and I’m not sure how she would have heard anything.
The doctor thought it was seasonal asthma and prescribed Ventolin. By late November, Tahli’s breathing and cough hadn’t improved and she was prescribed stronger medication.
But it didn’t work and Tahli’s cough got worse.
Despite a negative Covid test, her doctor said she couldn’t come back to the clinic. Tahli was determined to find out more and begged for a chest X-ray. The doctor agreed and sent the referral via email.
It was now early December.
The doctor called saying the X-ray indicated pneumonia, so I started antibiotics that night.
Four days later, a different doctor from the clinic called and said Tahli needed to go to a respiratory clinic as soon as possible. As it was late Saturday afternoon, Tahli didn’t think anyone would be available, so she called an after-hours GP who visited her at home, listened to her chest and said to continue with the antibiotics.
On Monday morning, the clinic practice manager called and asked Tahli to come in for a follow-up appointment. She went the next day and was referred for a computed tomography (CT) scan of her chest.
On Thursday, a few hours after her scan, the doctor called and said Tahli needed to collect her results and immediately go to the nearest emergency department. She didn’t explain why.
From pneumonia to blood cancer in a day
It wasn’t until a few hours later, after more blood tests at the local hospital, that Tahli received a different diagnosis. She didn’t have pneumonia, she had stage four non-Hodgkin lymphoma. This type of blood cancer starts in the lymphatic system. It often forms tumours in the lymph nodes and sometimes spreads to other parts of the body.
In that moment, Tahli felt like her world collapsed.
Tahli was told she’d need a positron emission tomography (PET) scan and a biopsy of the tumour in her chest. Tahli left emergency and went home to her family. She sat at the table with her husband completely overwhelmed, in shock and weeping. They wondered how they were going to tell the kids in the morning.
The next morning, as Tahli walked two of her kids to their last day of school, a cardiothoracic surgeon rang and asked if she’d eaten breakfast yet.
“I said, ‘No, I’ve just been diagnosed with cancer so I’m not really hungry’.”
Fortunately, that meant she could be booked in for a PET scan later that day. The scan would enable specialists to see the tumour more clearly and identify if the biopsy should be completed under a local or general anaesthetic.
During a PET scan, a small amount of a radioactive drug (known as a tracer) is injected into the patient. This highlights how organs are functioning and the cells that are more active (cancerous) than normal.
An urgent medic team is called in
The PET scan found the tumour was located in Tahli’s mediastinal area (the space between her lungs).
She was admitted to hospital the next day for a biopsy, and her nervousness about the procedure and diagnosis caused her heart rate to escalate.
They were telling me everything that could go wrong because it’s in a certain position and close to your heart and your lungs. So my heart rate just kept going up, up, up, and it got to 160. I was just obviously very anxious and nervous.
A MET (medical emergency) call was made and Tahli’s bed was surrounded by people asking her name and if she knew where she was. A decision was made to transfer her to the Alfred Hospital where more specialist expertise was available to address potential issues with her heart.
Unfortunately, Covid restrictions meant she would spend the next four days alone except for contact with hospital staff. During this time, she underwent a biopsy and specialists drained one-and-a-half litres of fluid from her lungs.
Tahli remembers lying in bed at home a few weeks earlier and hearing a gurgling sound – it was the fluid in her lungs.
I feel like if the cancer wasn’t diagnosed, I probably would have died from the fluid,” Tahli says. “Looking back, I was really unwell. But I had no idea.
Covid, isolation and stage four lymphoma
The medical team continued to be concerned about Tahli’s heart rate and eventually found it was caused by a combination of anxiety and the size of the tumour in her chest.
Tahli was allowed to go home on Christmas Eve and be with her family. A few days later, doctors advised she would need six intensive rounds of chemotherapy. Every three weeks, she would be admitted on a Monday and the chemotherapy would run 24/7 up until the Friday night, allowing her to go home on the Saturday.
Tahli assumed she could receive treatment as a day patient, so the idea of being away from her family for such long periods was devastating.
It was also a massive strain because we weren’t expecting that at all. And it was so overwhelming. Once every three weeks we would have to prepare for me not to be at home.
Tahli began chemotherapy on Monday January 4 2021.
Covid lockdowns meant she couldn’t have visitors in hospital for the first three rounds of treatment. Realising how important it was for Tahli to be at home, the haematologist altered the chemotherapy schedule so it finished around dinner time on a Friday. This meant she could be home with her family by the end of the evening.
Tahli immediately felt the side-effects of the chemotherapy treatment.
When I’d get home, I’d feel awful,” she recalls. “Then for that whole next week, I’d feel terrible. My bones would ache and I felt sick. Then the second week, I felt great. Well, as great as you can on chemo. Then just as you feel really good and you’re back into your routine and everyone’s used to having you home, I’d have to go back to hospital.
Tahli’s husband was able to continue working throughout Covid, so her parents stepped in to help with the children.
The tumour almost disappears, then grows back
After two rounds of chemotherapy, Tahli received good news – about 90% of the tumour had disappeared. She and her family were excited and thought she may finish treatment by May.
But after round four, a scan showed the tumour had grown.
Although doctors said this was significant, they were hopeful the final rounds would stop the cancer in its tracks.
I guess there’s always the thought that it’s not going to work, but you push that aside straight away when you’re diagnosed. You just believe, yep, I’m going to do what they tell me, the rounds of chemo, and then it’s all going to be finished.”
“I never thought it wouldn’t work. So, when I heard after the sixth round that it hasn’t worked and it had grown, well, how’s that possible? I was feeling so unwell on the chemo, surely it was doing something? I was completely bald by that stage.
Hair loss and eyebrow wigs
Tahli was deeply affected by her hair loss.
It’s more than hair,” she says. “It’s something you can’t control and makes you feel like everyone is looking at you because you have no eyebrows or eyelashes.”
“The looks that people gave were of pity and you just want to feel as normal as you can. You don’t want to have to go out and think, ‘What’s everyone going to think?’
When Tahli was admitted with a fever after her first week of chemotherapy, one of her doctors mentioned she would now begin losing her hair. She didn’t believe him.
After he walked out, I fixed up my ponytail and had a huge clump of hair come out. It looked like a little bird’s nest on the bed. I burst into tears.
One of the nurses comforted Tahli and told her about eyebrow wigs which are made of real hair.
I bought a pair of eyebrow wigs,” Tahli recalls. “But I was never brave enough to use them. I thought I might end up with one up here, one down there.”
“But my mum showed me how to use an eyebrow pencil and, by the end, I had the best-looking eyebrows.
Meanwhile, Tahli’s kids knew she was losing her hair and were keen for her to shave it off completely.
Then one day, I went to the hairdresser, cried and she shaved it. I came home and said, ‘I did it’. I was scared to take off my hat because I didn’t know how the kids would react. They just said, ‘Oh, it looks nice,’ and they kept touching it.”
“My husband was happy because, you know, he finally had more hair than I did. I said, ‘Well, it’s not permanent so don’t get too excited.’ And then, yeah, I just kind of got used to being bald.
On the road to a stem cell transplant
When the six rounds of chemotherapy failed to remove the tumour, Tahli was advised to undergo an autologous stem cell transplant. This meant her stem cells would be collected and transfused back to her following high-dose chemotherapy.
She underwent two more rounds of chemotherapy then daily injections to help her body produce enough stem cells for the transplant.
After five days of injections, with Tahli experiencing terrible bone pain as a side-effect of the process, doctors were able to collect three million stem cells.
It looked like things were heading in the right direction. Then Tahli received bad news.
A PET scan found the chemotherapy had been unsuccessful and the cancer was not in remission. This meant Tahli could not have the stem cell transplant.
A different road to remission: CAR T-cell therapy
Tahli’s oncologists were prepared with another option – CAR T-cell therapy. This revolutionary approach involves collecting a patient’s T-cells then altering their genetic make-up so, when they are reintroduced into the body, they seek out and destroy cancer cells. If cancer re-emerges in the future, the altered T-cells will once again activate and destroy the cancerous cells.
Tahli would be the first person in Australia to receive CAR T-cell therapy through the Pharmaceutical Benefits Scheme.
She was approved for the therapy within six weeks and once again, her cells were collected. This time it was T-cells (white blood cells that play a vital role in fighting infections and diseases) and they could be collected in around five hours because fewer cells were needed.
They got packaged up into a cardboard box, the padlock was on and then they said, ‘Okay, wave goodbye to your cells,’ because they were being sent to Los Angeles,” Tahli recalls.
It was Friday August 6 2021.
In the Los Angeles laboratory, Tahli’s cells were changed to help fight her cancer. Scientists added new proteins called chimeric antigen receptors (CARs) to the surface of her T-cells. These CARs help T-cells find the cancer cells and then destroy them.
Tahli underwent radiation to slow the growth of her tumour while waiting for her cells to come back. She also had lung function and fitness tests, and worked with a nutritionist to ensure she was as healthy as possible.
The week before the cells returned, Tahli had cell-depleting chemotherapy for three days to reduce the number of normal T-cells and make room for the modified CAR T-cells.
Her genetically modified cells returned from Los Angeles and were reinfused back into her body. It was one month since her cells had been collected.
A big tube-like container of dry ice gets wheeled in and you think it’s going to be amazing and massive,” Tahli recalls. “Then this tiny little tube comes out and it gets infused back in through my PICC line [thin intravenous line]. And about 20 minutes later, they said, ‘Okay, that’s it,’ and I was admitted into hospital.
After the CAR T-cell therapy
Tahli was discharged from hospital 11 days after receiving CAR T-cell therapy. She experienced some side-effects including a slight hand tremor, a slightly elevated heart rate, nausea, fatigue and high fevers for a few days.
Thirty days later, a PET scan showed Tahli’s tumour was gone. It was the first time she’d received good news about her health in almost a year.
Subsequent scans continued to show her body was clear and she remains in remission almost four years later.
Although she still experiences fatigue and cramps in her legs, feet and fingers, Tahli says she is happy to live with these side-effects because the cancer is gone.
Making the most of every day
A year later after CAR T-cell therapy, Tahli met the team who had tracked her cells and arranged for them to be transported to America. She says this was a wonderful moment for everyone involved.
Without them, I wouldn’t be here,” she says.
“I’ve made it my mission to advocate for CAR T-cell therapy and awareness around blood cancer.
Her advocacy has included speaking at a conference for teams involved in CAR T-cell therapy and travelling to Canberra to lobby politicians to make it more widely available for patients in Australia.
I’ve met so many beautiful people along the way. I feel very lucky to have met them. Terrible circumstances, but beautiful people.
These days, Tahli is enjoying life with her family and in remission.
I missed my kids’ first day of the school year when I was on my first round of chemo. That was probably the worst day. Now, I get to take them and pick them up.”
“You realise the little things, they don’t really matter. As long as you’re healthy, that’s all that matters.”
“Every day is a special occasion, you know, after you’ve had cancer. Because, unfortunately, you don’t know what tomorrow will be. One minute I was perfectly fine and then the next day, I was knocking on death’s door.
The importance of advocating for yourself
Looking back, Tahli often wonders how her tumour was misdiagnosed as pneumonia.
I look back at that X-ray and I’m like, ‘How did they miss that?’ You can actually see the massive tumour and fluid.”
“I guess the biggest thing for me out of this and for anybody else is, if you believe that something’s not right, then you have to keep pushing until you are happy with the answer. You know your body better than anyone else.”
“Because if I didn’t push for that X-ray, I wouldn’t be around.
This article shares personal experiences and general information. For tailored advice, please consult a healthcare professional.
Listen to the full interview with Tahli Batkilin on our Talking Blood Cancer Podcast.
