Deyan’s last option
When Deyan Cashmere relapsed in February, following a stem cell transplant, his only option was to go to the U.S. for potentially life-saving immunotherapy, at a cost of USD1 million.
Even though CAR T-cell therapy was approved by the TGA in Australia last December, it is still several months away from being made available to people like Deyan who’d had an allogeneic transplant from a matched unrelated donor.
And he couldn’t wait that long.
So, on March 16, Deyan, 20, travelled to Seattle with his parents, Kelly and Bruce Cashmere, to have the procedure where his T-cells are harvested, re-engineered, grown up in large numbers, and given back to him.
It was his first overseas trip.
In the lead up to his diagnosis in March last year, and during the series of different treatments he’s since had in Sydney in a bid to gain remission, Deyan has had a tough time.
And in those 12 months, he only got to go home once, when he spent three days at his parent’s wheat property at Hillstone, 680km west of Sydney.
When Deyan was 19, and just months away from completing his welding apprenticeship at Griffith, he started feeling unusually tired and lethargic. He lost weight rapidly and the bones in his hips and legs ached.
“He’d come home to help with the harvest in November 2017 and felt a bit off,” said Kelly.
“He went to the doctors numerous times and not once did they take a blood test, even though he asked for it,” said Kelly, describing the months that followed, when he was working on another farm.
Then, on March 11 last year, Deyan was rushed to hospital in Griffith with severe appendicitis.
“They took some blood and found he had leukaemia as well! He had no white blood cells whatsoever,” said his mum, Kelly.
“When they took out his appendix, they didn’t think he was going to make it through the operation because he was so badly infected, and he also had a stroke while he was under the knife.”
That night Deyan was flown to Sydney. He had sepsis “all through his body” and it was “touch and go for the next five days”. He still has a stoma from another operation 10 days later when his bowel burst.
It took two months to get Deyan’s infections under control and it was too risky to treat his ALL, so he didn’t start chemotherapy until May.
The first round knocked his ALL down to 70% blasts. But a second, different chemo saw an increase, to 80% blasts. It was the third chemo that got him into remission.
This was followed by three days of full body radiation before his stem cell transplant in October 2018. His donor – one of three potential donors in Australia – lived in Queensland and was a 10 out of 10 match.
But six weeks later, the cancer was back in his bloodstream at 0.001% and within another three weeks, it was back up to 100%. Deyan had relapsed. That was on February 4 this year.
“He was told there was nothing else they could do for him and that he had three to six months to live without any further treatment,” said Kelly.
During Deyan’s transplant, she’d read a news article about CAR T-cell therapy in America, which she discussed with his haematologist in October.
“She said ‘yes, we’re looking into that, in about January, if he relapses’. She had a fair idea he was going to relapse,” said Kelly.
The week after Deyan’s relapse, the Cashmeres looked into access to CAR T-cell therapy and fundraising, to pay for it.
“I wrote a letter to Greg Hunt [the Health Minister] in Canberra to say what had happened and that we needed assistance,” said Kelly.
“His secretary sent through a Medical Treatment Overseas Program* application. I filled it out and sent it in and we got approved.
“It’s wonderful to have this opportunity. It’s taken the weight off our shoulders.
“We would have had to mortgage the farm, and were ready for that,” she said.
“$1 million is a lot of money and we don’t have to worry now about how we pay that back when Deyan gets home.”
In addition to the treatment cost, the Commonwealth government is paying for Deyan and Kelly’s return flights, passports, visas and taxi fares to and from the airport.
One of Deyan’s two sisters, Jenny, set up ‘Deyan’s dash to the USA’ GoFundMe campaign which raised $76,000 in a month.
Kelly said this money would pay for Bruce’s airfares, and accommodation and living expenses for the three of them in Seattle during Deyan’s 12-week CAR T-cell treatment. And to help when they return to Australia. Deyan will spend another three months in Sydney being monitored and having follow-up treatment.
“Whatever is left, we will donate to the Leukaemia Foundation, which has been very generous,” said Kelly. (See adjacent story.)
On Friday night, March 1, the Cashmeres received word of Deyan’s eligibility for government funding.
“Deyan’s spirits have picked up since they gave him that option,” said Kelly.
“He’s probably the best he’s ever been in the last 12 months, even though he’s full of cancer.
“He took his diagnosis hard at the start, but he’s willing to keep going. He’s not given up yet.
“He’s looking forward to it [CAR T-cell therapy] actually. He just wants to get over there and get it done,” said Kelly.
Deyan was about to leave for Seattle when ALL News spoke to Kelly. But his departure was delayed based on the results of his last bone marrow biopsy. His response to three doses of inotuzumab ozogamicin (Besponsa®) “to get him overseas” was better than expected.
“It worked too well and knocked out all his cells,” said Kelly.
Deyan needed to have transfusions every couple of days over the following week or two until he was ready to travel.
When Deyan returns from the U.S. and he has fully recovered, he’s keen to get back to work and has a job waiting for him at Hillstone. And he can’t wait to be back with his friends and to go fishing and pig chasing and shooting.
* The Medical Treatment Overseas Program (MTOP) provides financial assistance for Australians with a life-threatening medical condition to receive proven life-saving medical treatment overseas where effective treatment is not available in Australia.
OUR ACCOMMODATION IN SYDNEY HELPED KELLY COPE
In Sydney, the Leukaemia Foundation provided the Cashmeres with accommodation at Waverton, six kilometres from the hospital where Deyan had appointments, blood transfusions and treatment, mostly as an outpatient.
“If we hadn’t had this free accommodation, it would have been even harder on us,” said his mum, Kelly Cashmere.
“It’s made a huge difference. It’s saved us a lot of money. They’re great little units.
“Most of the time, it’s just me and Deyan. Bruce comes and goes from the farm but it’s shut down at the moment.
“Neighbours have said they’ll put the crop in for us this year if it rains, because we’ll have no money this year if we don’t. We’ve been in drought for two years. We got no crop last year either.”
Kelly said she had adapted well to living in Sydney.
“I’ve had some rough spots, especially when Deyan had his transplant. He was very sick and in a lot of pain all the time. But I got over that hurdle and everything’s been going alright.
“When I get bad news, it hits me for a little while, but I get over it pretty quickly. You just have to keep going until the end.”Last updated on July 18th, 2019
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.