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Chris’ empathy based on his own experiences with CML

Published Date: 9 November 2016 Categories: CML, Patients, Volunteer

Since Chris Davis’ diagnosis with CML, he’s had three different treatments, endured debilitating side-effects, has taken part in an international clinical trial and is now disease-free.

Chris, 69, of Melbourne, discovered he had CML by accident in August 2005.

Prior to that, he was “really fit”, regularly rode 100km on his bike, had taken up rowing again, and was about to rack up 30 years operating his own trucking business. 

“In April 2005 I noticed I was starting to feel like I was getting old. I was getting low on horsepower and every time I exerted myself I had pain in my back and shoulders,” Chris said.

When his daughter found out she had haemochromatosis, Chris had a blood test to see if he had the inherited iron overload disorder too. It turned out that his iron levels were fine but his white blood cell count was up to 67.3; he had CML.

“I had no idea what it (CML) was. I asked my GP for a rough prognosis and he said my best case scenario was 12 months of ‘normal life’; he wasn’t aware of the new treatment (imatinib) which had become available.”

Chris and MaryWhen he consulted a haematologist after his diagnosis, Chris mentioned the pain he felt when he did anything strenuous, only to discover he was on the brink of a massive heart attack. Not as it turned out because he had a heart problem, but because his blood was too thick to pump normally through his heart.

His treatment for CML was delayed for a week while he had his heart checked and in September 2005 Chris went on the first generation tyrosine kinase inhibitor (TKI), imatinib (Glivec®).

He was severely affected by a range of side-effects including eye problems that affected his sight, extreme sensitivity to the sun, nausea, fatigue and walking was always difficult.

“It felt like I was continually walking upstream, pushing against the current.”

“Glivec used to make me sick every time I took it. It was horrible. But it did the trick – it got my white blood cell count down and I have to be grateful for that. It went down from 100 to 6-7 in 18 months.

“But the Glivec was very hard on my liver in particular, and after 18 months of treatment, I had to go off the drug before my liver collapsed.

“There was a bright side,” said Chris with a touch of humour. “I was getting a bit of colour back in my face ... from the jaundice!”

“My eye troubles cleared up as soon as I went off Glivec and my liver recovered very quickly.

“I needed another treatment but there wasn’t anything available at the time.”

Over the next six weeks, Chris felt that the CML was coming back, and this was confirmed by a blood test.

“Then I was offered a three-month free trial for dasatinib (on compassionate grounds) before it was listed on the PBS.”

After four months on the second generation TKI, dasatinib (Sprycel®), his BCR-ABL count reached zero: “It got down to less than 1 cell in 10 million and stayed at that level.”

This was confirmed with a blood test every three months. However, after 18 months on dasatinib, Chris could hardly walk and was literally drowning from the build up of fluid in his lungs.

“If I tried to mow the lawn, I’d pass out.”

So, in October 2008 Chris changed his treatment again, moving on to nilotinib (Tasigna®).

“It was the pick of the three for me and Glivec was the worst by a long way,” said Chris.

He took nilotinib consistently for 4½ years until he was asked to take part in a clinical trial for people with a deep molecular response to their TKI treatment.

“I thought I’ve got nothing to lose and everything to gain and I was glad to get off drugs for a while,” said Chris about his decision to go on the trial.

“My motive was to get off the stuff that I had to take every day for the rest of my life. I constantly felt sick and was always half an hour away from vomiting.”

By that time he’d had more than five years with less than one (CML) cell in ten million – considered a deep molecular response.

“I had taken my tablets religiously for 2674 days (seven years and four months). There was hardly a day when I missed a dose. I wasn’t going to wimp up on anything and because I stuck to it so hard, the CML had become undetectable.

The protocol for participants on the international multi-centre trial was to stop their TKI medication and that’s what Chris did in January 2013.

“I still felt like crap,” said Chris about the side-effects he continued to experience.

But, importantly, he had no (disease) returning symptoms and after seven months his CML had not come back.

In August that year, Chris was given the ‘all clear’.

“It was a bit of a surprise and it didn’t hit me until I got to my car. That’s when I got excited. I couldn’t drive for 20 minutes. I called my daughter and she burst into tears. I’d beaten a heart attack and leukaemia!”

That’s when his haematologist said to Chris – “now we’re going to fix up all the side-effects”, and top of the list was depression, which is now fully under control.

“It was never unbearable but it went on day after day after week after month and it affects the soul.

“When I finally got everything beaten and got a good blood report, I retired in June 2014.”

When Chris got CML, he had been running his own trucking business and maintaining his vehicles for 30 years, but two years after his diagnosis, Chris found he could no longer function at work due to his debilitating side-effects.

Chris Pickering TransportIn early 2008, he took a job as a “wage slave” driving for another company, the Pickering Transport Group.

“I didn’t initially tell them I had leukaemia, but when they found out, the company looked after me – it was sensational. Their support was fundamental to my survival. I will forever be grateful to them.”

“When I explained that I didn’t ‘come good’ until about 11am, they said I could start my working day at 10am. It was a lifesaver – the company had such faith in me.” 

It is now nearly a year since Chris has had a blood test and he hasn’t had any medication relating to leukaemia since January 2013.

“It’s like I’ve had three lives. There’s the life I used to have before CML, my life on drugs that I have no memory of, and now, when I have another chance at life and it’s utterly brilliant.

“I feel relaxed and peaceful and there’s nothing else I want,” said Chris.

“Sometimes, these fierce challenges show you what’s right and what’s wrong in the world. I’ve fought off the devil and won, I’ve tested myself to the limit and won. I never gave up. The thought did cross my mind, but I had to keep going.”

Chris says he’s happily married to Mary, his wife of 48 years, and they have a wonderful life together in retirement. He has five “beautiful grandchildren” and prides himself in being ‘the softest granddad in the world’.

And when he spoke to CML News, he was spending a few days in the country at Ararat, near the farm where he grew up, restoring an old 1951 Fordson tractor that was his father’s when he was a kid.

He currently has two tractors, a truck he kept from his business, and an old plough on the go.

“Life’s pretty darn good – I can tell you that.”

Chris LF transport car

Chris and the Leukaemia Foundation

The first thing Chris did when he retired was to work for the Leukaemia Foundation as a volunteer driver.

“I get the biggest buzz out of doing this and a big warm feeling inside.

“The great advantage of having had leukaemia is that you have immediate empathy with the people whom you are driving to and from appointments. And you don’t have to talk about the weather or football, you can talk about leukaemia and about how their treatment is going.

“I picked up a lady in her seventies one day who was accompanied by her daughter. She wore a little red hat and a lock of hair protruded from it. I said to her ‘at least you haven’t lost all your hair. I was an eggshell blond when I was on chemo. The only time I ever had hair on my chest was after I had picked up the cat!’”

Chris and his grandchildren“She had looked a bit sad and sorry for herself so I cracked a few cancer jokes and she was smiling by the by the time I dropped her off. Her daughter rang me later and said ‘thanks for making mum laugh’. God, I felt good.

“I’m also a Blood Buddy and have been a Buddy to two people so far. It’s good for me and I hope it’s good for them too.”

His first contact with the Foundation was when he picked up a brochure in hospital soon after getting CML, and he subsequently went along to a support meeting.

“I was still working for myself and was struggling. I just wanted to talk to someone with CML.

“I think the Foundation is terrific. I love the camaraderie and doing something positive – that’s a big thing.”

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