From clinical trial to remission
Dr John Rogers is one of the first Australians with chronic lymphocytic leukaemia (CLL) to successfully stop treatment on a venetoclax clinical trial. Two years later, he’s still in remission.
At the start of the trial, just hours after having his first dose on 9 July 2013, John noticed a response.
“I knew by feeling the glands in my neck that it had an effect,” said the now retired geneticist and psychotherapist, 77, of Melbourne.
Six months later his bone marrow was clear of CLL.
“It was great news but I wasn’t officially in remission until 19 February 2016, when there was no evidence of enlarged lymph nodes on a CT scan… my lymph nodes had been as large as 10cms each!”
John stopped treatment on 29 March 2016 – two years and nine months after going on the trial for a combination of venetoclax (called ABT-199 at the time) and rituximab.
His original start date for the trial was in mid-December 2012 but at the last minute there was a seven-month delay.
“I was due to start on the Monday and on the Friday [before] they suspended the trial… two people on the trial had died in North America, from tumour lysis syndrome,” said John.
His initial reaction to the suspension was distress but also pragmatism.
“There was nothing I could do about it.”
More than 20 years earlier, John had been diagnosed with lymphoma and treated with high dose chemotherapy. It was an experience that changed his life.
“Having a lymphoma gave me the courage to do something I had always been keen on doing,” he said.
“I had a strong interest in grief and loss and life-threatening disorders,” said John, who had previously worked with Elizabeth Kübler Ross*, training as a staff member in her workshops.
He decided to resign from his position as director of Clinical Genetics at the Royal Children’s Hospital and started training as a psychotherapist. Then he divided his time, working in private practice with a special interest in psycho-oncology, and in genetics at the RCH.
“I learnt two lessons from having lymphoma. One was the ability to say ‘no’ and the other, to be more pragmatic about life and live each day as it comes.”
He had six-monthly follow-up blood tests and in 2002 the results showed an elevated lymphocyte count, which turned out to be CLL.
“They were watching me at that stage. Then in 2010, we thought it was necessary to have some treatment due to the large glands in my abdomen.
“I was offered fludarabine but was concerned about how sick it was going to make me. I preferred a gentler approach and had a course of the old fashioned treatment, chlorambucil, for several months.”
Venetoclax clinical trial
John’s next treatment was a monthly infusion of rituximab which he had for a couple of years until it stopped being effective.
“The glands in my abdomen keep enlarging and I looked nine months pregnant,” said John.
He had low dose X-ray therapy to his abdomen in November 2012. This made it a little easier for him to breath and he was “worked up” at the Peter MacCallum Cancer Centre for the venetoclax trial with “blood tests, a bone marrow test, CT scans and heart scan”.
“I realise how fortunate I have been to participate in a trial with such an outstanding outcome, REMISSION,” said John and he describes venetoclax as “quite miraculous”.
“This was an oral drug that was easy to take and, compared to CHOP2 which were intravenous drugs that made me very sick, it was amazingly simple,” he said.
“And it was quite interesting because I started at 20mg. John Seymour came and gave me the tablet.
“When he came around again at the end of the day, he asked, ‘what do you think?’
“I said, I think the glands are softer. He felt my neck and said ‘I think you’re right’.
“The next day I went from 20mg to 50mg and it was clear that it had an effect even at that very low dose. I suppose I have the advantage of being a doctor – I knew by feeling the glands in my neck.”
Over three weeks, John’s daily dose was gradually increased to 400mg before he began having monthly rituximab infusions for six months, and in 2015 his venetoclax dose was reduced to 300mg, based on the results of more studies.
“The trial had its own demands involving time and travel to Peter Mac. Participating was easier as I am retired,” he said.
Stopping blood cancer treatment
John’s decision to stop treatment almost three years ago was made in conjunction with Dr John Seymour.
“I looked at the figures. There was not a lot of information. About 11 people in the world had stopped the treatment at that stage. Not all were in remission. Some had stopped because they couldn’t tolerate it or didn’t want to continue.
“There was a small handful that had stopped and I was reassured that if the CLL reoccurred I could recommence the treatment.
“I can’t say I felt confident, but I thought it was reasonable to stop, and I stopped cold turkey.
“I’m still part of the trial and every three months I go back to Peter Mac for a review and blood test (which I have a few days before the review).
“They’re carefully monitoring how things are going but that’s all remained normal.
“After the last blood test I am still officially in remission and have no enlargement of lymph nodes clinically. I’ve stopped having CT scans. I was having them every three months but eventually they decided that was unnecessary,” said John who is enjoying life.
“I do some reading, some writing, pick up grandchildren from school, try and keep fit, walking and swimming. I enjoy film, theatre, classical music, time with friends and overseas travel and holidays.”
Last year John and his wife, Margot, pictured, took one of their four grandchildren, Sam, to Central Australia.
“We promised we’d take him when he was 10 and we got there a week before his birthday.”
Clinical trial information
“I think there’s nothing to fear in a trial. You have to be prepared to do the work and comply with the things they want you to do,” John said.
“I had to keep an accurate diary of the time I took the venetoclax tablets each day and the food I had for breakfast. This was not difficult and my visits to Peter Mac reduced as the trial proceeded.
“At the beginning of the trial, frequent attendance at hospital was necessary. I was an inpatient for a few days as it was the start of dose escalation and they took blood every four hours so they could monitor me closely.
“You need a bone marrow biopsy to go on the trial and bone marrows are done at various times afterward. The way they were done, they were never a problem.
“CT scans are so quick and easy and even though you have contrast media with them, they also are no problem. Blood tests could be a challenge as my veins are bad from previous chemo. It was necessary to find the best blood collector!
“The follow-up, at one level, is simple. I don’t think anybody should be put off by the investigations they will have along the way.
“Having a strong, supportive partner makes the journey easier.”