Living well with myeloma
At 78 years old, Jane Jackson has no intention of slowing down.
Qualifying as a physiotherapist in 1969, Jane worked in the field for nearly 50 years. She spent her youth travelling as much as she could, and in her mid-30s, she decided to get fit. “It ended up taking me to places I never expected,” Jane says. “I’ve done several marathons, I did an Ironman and the Coast to Coast. I was New Zealand’s top race walker. So I did a huge amount.”
Even into her late 60s, Jane stayed active, entering the World Masters Triathlon in 2017.
“I wasn’t as fit as I had been, putting it all down to age, of course,” she says. “But I was still competing, still teaching pilates, and still travelling around New Zealand and overseas.”
Throughout 2020, Jane had noticed she was getting more infections than usual. “In early 2021, my doctor did some blood tests, probably for that reason. While I was away in Stewart Island doing a tramp, he rang me. He said he wasn’t happy with one of the results, and that I had an appointment with a haematologist when I got back.”
On the same trip, Jane broke a rib while rolling over in bed. She was also feeling more tired than usual and had been short of breath. “It all came on quite suddenly,” she says. “I hadn’t really cottoned on that I was getting less fit, or that I’d had all these infections. But then it was quite clear something was wrong.”
At this stage, it was February 2021, and Jane’s appointment with the haematologist was scheduled for just days after she got home. But the life-changing news came sooner than expected.
“My eye specialist actually rang me the night before my appointment,” Jane says. “He said he thought I had myeloma because the MRI for an eye problem showed I had lots of holes in my skull. He shouldn’t have told me, really. I wasn’t even sitting down.”
Her diagnosis was quickly confirmed with a bone marrow biopsy, and she was started on CyBorD treatment almost immediately. “I got the huge stomach and the fat face and the weak legs, things like that,” she recalls. “But it did put me in remission.”
The next step in her treatment plan was a stem cell transplant. “Even though I was older, they decided I was fit enough for it and had a good attitude,” she says.
But unfortunately, it wasn’t to be. “Sadly, I couldn’t produce enough stem cells, so that was off the table,” she says. “That was gutting to start with, because it seems that people who’ve had stem cell transplants have a longer remission.”
But over time, she came to terms with it. “I thought that at my age, I probably would have been quite knocked around by it and not have had such a good quality of life for a while. So I came to accept it.”
When Jane’s myeloma came back a few months later, she was put on a new trio of drugs – lenalidomide, cyclophosphamide and dexamethasone. “They were able to fund it because the stem cell transplant had failed,” she says.
This combination didn’t give Jane another remission, but it did keep things under control for a while. “I had a couple of visits to the hospital for pneumonia,” she says, “but apart from that, I was reasonably fit and well.”
When the lenalidomide eventually stopped working, Jane was offered an experimental stage clinical trial. Unfortunately, it didn’t go well.
“It was the worst time in my life,” she recalls. “The side effects were absolutely horrendous. All my skin peeled repeatedly, my nails fell off, I had a rash from head to toe, and I couldn’t eat for six months.”
The trial group Jane was allocated to meant she was taking the new drug in combination with an already proven drug. “That’s the only reason I stuck it out,” she says. “Because I knew it was going to help me. I did get close to remission, but after five months, I felt very, very unwell.”
When she came off the trial, she was started on yet another drug – this time, pomalidomide. She’s tried it in combination with several different drugs, and now seems to be in a place where her myeloma is well-managed and her side effects are tolerable.
“Quality of life is important to me,” Jane says. “And over the last year, I’ve had a good quality of life. I still enjoy overseas travel, I love watching movies and shows, and I exercise almost every day. Nothing like the level I used to, but I think it helps me with pain tolerance, and it helps my mood. And exercise sometimes entails coffee with friends afterwards – so the social side of it has helped me, too.”
Something else that has helped Jane through is attending her local myeloma support group run by Blood Cancer NZ. “I’ve found it really, really helpful,” she says. “It’s not just that I don’t want to burden the people around me, it’s that they don’t always understand. So it’s good to go along and tell your story, and hear other people’s stories.”
Jane doesn’t know what the next few years will hold, but she’s prepared for whatever is to come.
“I feel accepting of my future,” she says. “It’s quite reasonable that someone of my age might have something terminal. When this treatment fails, I don’t want to spend hundreds of thousands of dollars on a new treatment that will also have side effects. So I’ll stop, and we’ll just see what happens.”
