Lyn's second chance at life
In 2021, Lyn had recently retired after a long and varied career in the business world. She and her husband had moved to Lincoln and were looking forward to enjoying this next stage of their lives.
Then Lyn’s health took a turn. Between thyroid issues and a cough she just couldn’t shake, it wasn’t the start to her retirement she’d hoped for. She began having all sorts of investigations to figure out what was going on.
“I had a blood test a week before Christmas,” Lyn says. “They were monitoring my thyroid because I was quite ill – like a zombie, really.”
In the lead-up to Christmas, she felt as though she might be coming right. But then things went south. “On Christmas Day, I was just a mess, and on Christmas night, I saw angels,” she says. “I nearly died.”
Her husband went to ring the ambulance, but Lyn stopped him, promising she would go to the medical centre the next day.
On Boxing Day, she was started on antibiotics. When she saw her regular GP a few days later, he ordered urgent blood tests and rang her soon after with the results.
“He asked how I was feeling, and I told him I felt really lousy,” Lyn recalls. “He said, ‘You’re going to haematology tomorrow. You’re having a bone marrow biopsy, a scan, blood tests – the whole works.’”
At the hospital, a doctor took Lyn and her husband into a room. He explained that within just one week, one of her blood results had gone from being in the normal range to showing over 70% blasts, indicating she had acute myeloid leukaemia (AML).
“I said to him, ‘What’s the treatment?’ and he told me there wasn’t one,” Lyn says. “He told me that, in my case, being over 65 meant I wasn’t eligible for a stem cell transplant.”
“So I asked, ‘How long have I got?’ and he told me five to eight weeks.”
Before Lyn and her husband could fully take in the news, they were visited by another specialist who spoke to them about a clinical trial for a new drug. “They said this trial had just started, and that I would be eligible to go on it, but I would need to start very quickly,” Lyn recalls.
It seemed like the only option available, and Lyn didn’t need any convincing. She didn’t know it at the time, but she was signing up for the first New Zealand trial of venetoclax.
Just days later, Lyn was back at the hospital to begin treatment. At first, it made her very sick. “It was just the combination of everything at the start – with the chemo injections, the venetoclax and the antibiotics,” she says. “It was all a shock to the body. I was eating very little, and I was up to the toilet every five to ten minutes.”
Lyn was given a break to allow her body to recover, then put back on the venetoclax at a lower dose. She was told that even with this treatment, she might still only have 11 months left to live.
“I didn’t think I’d see Christmas,” she recalls.
Lyn was desperate to talk to someone about how she was feeling. She researched what support was available and ended up connecting with Kate, her local Blood Cancer NZ Support Services Coordinator.
“Kate was brilliant,” Lyn says. “I caught up with her one day, and she was just lovely. I told her that even my friends couldn’t grasp what I was going through. She was really good.”
Lyn also regularly attends Blood Cancer NZ support groups. She enjoys hearing from the different speakers that come along, and she’s made a good friend who also has AML. “He and I have a lot of contact,” she says. “It’s good to have somebody to talk through everything with.”
It has now been four and a half years since Lyn was diagnosed. “I’ve been extremely blessed,” she says. “I’m fortunate that it has worked so well for me. And overall, I’ve had so few side effects.”
The venetoclax trial has now ended, and Lyn is on a 10-week treatment cycle, which involves two weeks of venetoclax and 10 days of chemo injections. She has blood tests before the start of each round.
Although the treatment is still working, Lyn’s haematologist recently reminded her that this is not a cure, and it’s likely her leukaemia will come back at some stage.
Lyn has no idea how long it’ll be before that day arrives, but she is glad to have taken part in the trial, and that venetoclax is now funded for Kiwis in her situation – giving people an option where previously they wouldn’t have had any.
She finds that during chemo weeks, she needs to take things day by day. “I might get stomach cramps or feel lethargic, and I’ll just want to crash a bit,” she says. “It’s unpredictable, so I don’t plan anything during that time.”
But otherwise, she feels quite good. “Most of the time, I can still carry on quite normally, but I do have to pace myself. Although I say to people, ‘If you take me out shopping, I’ll cope!’ I can always handle an afternoon of shopping.”
Her diagnosis has been life-changing in ways she didn’t expect. Knowing she may be short on time has given her a greater appreciation of life, and she says it’s also made her more direct with people.
“Sometimes that doesn’t go down well,” she laughs. “But I just don’t hold back!”
