Lymphoma: new drug gave Chris another chance
Chris Brugger has been fighting Hodgkin lymphoma (HL) for seven years.
He’s been in and out of remission several times. He’s had two transplants, and his latest treatment was brentuximab vedotin (Adcetris™), which he’s had to pay for himself at $16,000 a dose.
Chris and his wife, Naomi, have also had two children since his diagnosis in January 2008, at the age of 28.
“One thing we’ve learnt is to keep going and to make the most of our times together,” said Chris, now 35, of Griffith in NSW.
In December last year, when Chris relapsed yet again, his options were limited, having already had a range of chemotherapy, radiotherapy, an autologous transplant, and an allogeneic transplant.
“My wife had read about brentuximab on the internet,” said Chris about the drug that potentially gave him another chance of surviving lymphoma.
“But it wasn’t covered by the Pharmaceutical Benefits Scheme (PBS) and it was pretty expensive – $16,000 every three weeks.
“That’s when we started fundraising; it’s been a lot of work.
“Our community has been incredible. We’ve raised almost $60,000 to date,” Chris said.
He started brentuximab in January 2015 and it’s been very effective. Within a couple of weeks he was back at work as a logistics manager for an engineering firm.
“As soon as I had the first dose, I started feeling better.
“It’s very mild, didn’t make me sick like chemo and it didn’t seem to affect me side-effects wise except for some stomach cramps and nerve damage in my fingers and toes.
“There’s just no comparison to chemo. It’s like a walk in the park,” said Chris who finished his seventh and final dose of brentuximab in late-May.
In April, Chris and Naomi, along with the Leukaemia Foundation, appeared before a Senate inquiry into drug access to explain their family’s plight in Chris gaining access to a new and proven treatment.
“People should have greater and more affordable access to lifesaving drugs rather than having to fundraise and worry about how they’re going to pay for it, as well as going through the treatment,” Chris said.
Despite being devastated when the Pharmaceutical Benefits Advisory Committee (PBAC) reported not having the information needed from the drug sponsor for a positive recommendation for brentuximab vedotin at its April meeting, Chris remains positive.
“I’m trying to do the right thing; listen to the doctors, eat healthily. There’s not much more we can do. I’m a bit sick of being sick all the time.”
Before his lymphoma diagnosis, Chris had itch symptoms on his lower legs for a couple of years.
“It was really bad and my GP couldn’t figure out what it was. I went to a skin specialist who said it was in my head and prescribed anti-depressants.”
Then, when Chris noticed a lump in his neck his GP organised tests and scans and a bone marrow biopsy showed he had HL. Looking back, Chris remembers waking at night all sweaty and he had dropped five kilos in weight.
“I’d put it down to working too much,” said Chris.
After his first treatment in 2008, he was in remission for 2½ years, when Chris and Naomi’s firstborn, Tomas, was conceived naturally and born in 2010.
Chris was back at work when he had his two-year check up: “I was told it was rare for the lymphoma to come back after two years.”
But a few months later Chris was having physio for a torn pectoral muscle when he noticed a lump, then other symptoms started reappearing.
“It wasn’t easy, especially when you know what’s coming,” said Chris about being diagnosed again, in March 2011.
He began a different course of combination chemo and when he went into remission again the decision was made to have an autologous stem cell transplant.
He went back and forth to Sydney to have his stem cells harvested and to have the transplant at the end of November 2011. He got a series of infections and lost 16kg before heading home 10 days before Christmas. But on the drive back to Griffith he had a mini stroke, so the next morning an air ambulance took him back to hospital in Sydney. He flew home again on Christmas Eve.
“I ramped up pretty quickly after that and went back to work part-time in March and full-time in April.
“Everything was back to being normal-ish and we decided we wanted to add to our family.”
Then, 18 months later, a chest infection was the sign that all was not well for Chris and in mid-2013 “it all started again”.
“We were in the middle of IVF and as we had paid all the money, we decided to give it a go and see what happened. Naomi was heavily pregnant when I had another transplant at the end of February.”
This time, Chris had an allogeneic transplant with a matched unrelated donor.
Chris stayed in Leukaemia Foundation provided accommodation in Sydney for seven weeks after leaving hospital.
“This was fantastic and a big help. Everything was there, a kitchen so you can cook, a washing machine and dryer.
“The Foundation’s transport to and from the airport, hospital and cancer centre was really good too.”
As Naomi was expecting, she stayed home at Griffith with Tomas. Friends took time off work to go to Sydney and help look after Chris until his 100-day post transplant milestone. For some time afterwards one of his mates sent him a text every night at 10pm.
“It said – ‘it’s time for your pills’. That sort of thing is really special,” Chris said.
While he was still away recovering, his second son, Liam was born.
“I didn’t get to meet him until five days after his birth when Naomi brought him up to Sydney.”
Chris said the second transplant was really hard on his body. He tired very easily and picked up every bug going around.
“I was getting to the stage where I could go back to work at the end of the year. Then I started getting random high temperatures again.”
In early-December 2014, he was flown back to Sydney for scans and biopsies and it was confirmed – his lymphoma had come back again.
Following his treatment with brentuximab this year, Chris was told he’s in remission again.
“I’m looking forward to things getting back to normal a bit and hopefully to staying in remission. I don’t have a problem getting into remission – it’s staying there,” said Chris.