By the grace of the drug Glivec

By JILL MALCOLM

I don't know if I really want to talk about this," says Areta Wilkinson with a smile as wide as the door we've just walked through. "I don't want to think about how I was - that other person. It's how I am now that is important because it's so wonderful."

Joining us in a quiet room upstairs in a Kingsland cafe is Caterina De Nave. "I know how you feel," she says. "I have been overwhelmed by the support and love I have received. But my illness is only one aspect of my life. I don't want to be defined by it. There are still my work, my house renovations, my relationships."

Areta, 32, is a design tutor at Unitec and a talented jewellery artist. Her exquisite gold and silver brooch representing the Mt Cook lily was presented to the Queen when she visited in February.

Caterina, in her early-50s, is head of the drama and comedy unit at TV3. She made her name as the driving force behind the Topp Twins, the original producer of Shortland Street and much more.

Both women are attractive, articulate and confident. Both work hard at their careers and both have a rare, potentially fatal illness called chronic myeloid leukaemia (CML).

Two years ago Areta received the blow that spun her life down-side up.

"It was the new millennium and things were going well," she says. "I was working hard and playing often - even going to the gym every day.

"Looking back, I suppose I was tired, but I had thought it was just because I had this really energetic lifestyle.

"In January 2000 I got the flu - or so I thought. Only there was something a bit odd about it because I had it over two weekends with a 'well' space in between. I spent one weekend sweating because I was so hot and the next shaking because I was so cold.

"I also had a cold sore on my lip which didn't quite go away. I thought I must be run down and went off to the doctor for a checkup. It never crossed my mind that anything could be seriously wrong.

"I had a blood test and various other checks in the morning and that afternoon I got a phone call from my GP. She told me that the result of the blood test was serious but wouldn't tell me why over the phone. She said she would come to my house. That was really scary."

The bad news was that Areta had an astronomical number of white blood cells which almost certainly meant chronic myeloid leukaemia.

"Leukaemia. I'd only heard of the name. But I knew it was a type of cancer and to me that meant it carried the strong possibility of death," says Areta. "I was stunned, I mean how do you deal with news like that? I went numb. I think I was numb for about the next three weeks.

"That night I had to ring my poor mother and tell her. She lives up north. We tried to get hold of my father but he was at the other end of the country and we couldn't find him. I sat up and cried most of the night. It was hard to believe that I might be going to die."

First thing next morning Areta was in the Auckland Hospital's haematology unit for a bone marrow test to confirm the diagnosis.

It did.

The consultant told her CML is diagnosed by the presence in bone marrow of the so-called Philadelphia chromosome, which causes an explosive proliferation of white blood cells.

The illness has three phases. At first a reasonably symptom-free "chronic" phase lasting two to five years, a six- to nine-month "accelerated" phase, and the "blast crisis" which lasts from three to six months.

Each phase is marked by an increase in the number of white blood cells and, as it progresses, the disease becomes increasingly resistant to treatment. Patients generally survive for around four years.

The consultant also said that, to date, bone marrow transplant was the only known cure for this type of leukemia and a search for a donor for Wilkinson would be started immediately. In the meantime she would be given a chemotherapy drug called hydroxyurea to get her white cell count down, followed by Interferon which would mask the symptoms and slow the progress of the disease. Neither treatment was considered to be a cure.

A FTER the numbness had worn off and some sort of reality had started to set in I was deeply traumatised," says Areta. "But early on I had one bit of luck. Someone at work had an ex-colleague who had CML and had had a bone marrow transplant.

"He was more or less cured in that he was leading a full and happy life. I went to see him and that showed me a bit of light at the end of the tunnel.

"I can't say that hydroxyurea made me feel any better because I didn't feel sick in the first place. I had lots of support. My friends and family rallied around to the extent that I had to put up some boundaries. Every time I had to tell another friend that I had cancer I went through it all again - all the shock and crying - and that in itself became exhausting.

"After a few months I became part of a trial that was using chemotherapy drugs and Interferon together. Interferon was the most effective drug available at the time. I reacted very badly to this. I lost weight. I had stomach pains, vomiting and diarrhoea. But worst was the exhaustion.

"It was like the worst jet lag. Life was an absolute slog. Sometimes it was hard just to move. I couldn't concentrate, and from being the most positive person I know, I became depressed.

"My working capacity was reduced by about 90 per cent and eventually I had to go on a part-time benefit. I kept going to work because it kept me connected to the world. When my whole identity had been blown apart, it was a kind of stabiliser."

The search for a bone marrow donor drew a blank. Areta has three siblings but none of their marrow matched. "I have a Maori gene," says, "which is apparently a rare one. I am registered on the International Bone Marrow Register and the search continues. It's been two years now."

Interferon reaches its maximum benefit at around 15 to 18 months. At that point, 66 per cent of Areta's bone marrow cells had no Philadelphia chromosome, which was not a great result. Because of this poor response and lack of prospective donors, she become part of the Expanded Access Programme for a new, dramatically effective oncology drug, Glivec.

The programme, which had been set up by the drug's manufacturer, the pharmaceutical company Novartis, undertook to supply Glivec free until this month to CML patients for whom other forms of treatment had failed.

"That was my second bit of luck," says Wilkinson. "There are 30 of us on the programme in New Zealand. And thank God, if I have to have leukaemia that I have it now, not five years ago.

"I'm just so grateful to be on the programme. Glivec costs around $70,000 a year and it would have been impossible for me to fund myself."

So, last November Wilkinson started swallowing a daily dose of four yellow capsules. Within a month the side effects of Interferon disappeared. Her energy began to return. Three months later a biopsy showed, incredibly, 98 per cent of her cells no longer had the Philadelphia chromosome. She felt fantastic, returned to working fulltime and enjoying every aspect of her life again.

Six months later she was 99.5 per cent free of the chromosome.

"It's miraculous," she says. "A few weekends ago I went for a 14km bike ride, walked from Milford Beach to Takapuna and back, and swam half a kilometre. This time last year I could barely walk around the block.

"Of course Glivec is still experimental. It's only been around for three years so no one knows the full extent of its effect - but from my perspective it's looking good."

On the first day of this month, Wilkinson got her third piece of good news. Novartis announced it would continue to supply the drug to those on the expanded programme until it becomes publicly funded.

"Another stroke of luck," says Areta. "I don't have to worry about where I am going to get $6000 a month to stay alive. You can imagine how grateful I am."U P to a crucial point Caterina's story is similar to Areta's - she suffered the same flu-like symptoms that sent her to the doctor, the bone marrow biopsy and shock diagnosis, the stunned disbelief and then treatment with hydroxyurea followed by Interferon. But she did not get the lucky breaks.

"I'm on a lower dose [of Interferon] than Areta was," she says, "but its a pretty battering drug. I feel knocked out all the time. Let's say that right now instead of talking to you, I would rather be lying down.

"I'm weepy and often short of breath, my legs ache and I get a lot of headaches. Some days my work output drops by about 25 per cent. I don't know what effect it's having on my cells as it's too early to tell."

Although her illness was diagnosed seven months ago, she still has no matching bone marrow prospects - and she did not make Novartis' Glivec trial. Worse, while Pharmac has agreed to fund the drug only to people who are in the accelerated and blast crisis stages of the disease, she sits outside the criteria.

"But the most effective time is during the chronic phase which is the one I'm in now," says Caterina with a shrug.

"It's very hard to know that there's something out there that's available and that would not only arrest the progress of this terrible illness but could possibly cure it - but that it's not available to me. It's like a death sentence.

"I know Glivec is very expensive, but when you consider time spent in hospital, the cost of Interferon, the cost of other drugs, the cost of a [sickness] benefit if I can't work, the loss of my taxes and all the care I am going to need, it makes Glivec look like a good option.

"I understand Pharmac's difficulty and I think they're really trying because they are in discussion with Novartis about how the drug can be funded."

Caterina's life could well depend on the outcome of that discussion.

For all that, Caterina is adamant she has had some luck. "I think Areta and I have both been incredibly lucky to have been looked after by the haematology department at Auckland Hospital.

"The way the staff there have cared for us and made themselves available whenever we've needed them has been fantastic. Having that support has made a big difference to my ability to handle whatever comes along."