Grandfather with blood cancer praises new drug trial at Milton Keynes hospital

Marc Auckland, 62, is taking part in a trial of a new drug for chronic lymphocytic leukaemia (CLL) at Milton Keynes University Hospital.

The FLAIR study - run by the University of Leeds - is looking at whether ibrutinib has fewer side effects than current treatment of chemotherapy drugs fludarabine, cyclophosphamide and rituximab (FCR), which can result in infections and breathing difficulties.

Mr Auckland was diagnosed with CLL - where the bone marrow makes too many white blood cells which are not fully developed and do not work properly - in February 2016. This leads to an increased risk of infections, persistent tiredness, swollen glands in the neck, armpits or groin and unusual bleeding or bruising.

Treatment cannot usually cure the disease, but can slow its progression and lead to periods of no symptoms. About 70 percent of people will survive for more than five years after diagnosis.

The grandfather-of-two said: “I did notice I was getting tired a lot and I was picking up coughs and colds and I was taking a long time to get rid of them. I just thought maybe that’s just part of ageing. I didn’t suspect anything until my GP kept calling me in for blood tests, which showed something awry with my white blood cell count.

“At the time it was very shocking because you hear cancer and you hear chronic and you hear leukaemia and I heard very little of the rest. He told me that it would be put on ‘watch and wait’. It wasn’t curable, but hopefully it was manageable and I would come in for regular blood tests.”

Watch and wait involves doctors monitoring a patient's condition without giving any treatment until symptoms appear or change. As CLL progresses slowly and often has few symptoms at first, patients may not need immediate treatment.

Mr Auckland said: “The symptoms are subtle, but gradually as it’s progressed, my immunity has lowered. I loved my allotment but eventually I had to give it up as I was getting too many repeat illnesses.”

To learn more he attended a conference by charity CLL Support, where he found out about the study, which was recommended to him by his consultant.

Mr Auckland, now chair of trustees at the charity, said: “I knew the standard treatment would not be very good for me, so I saw my consultant and he said ‘have you heard of the FLAIR trial?’, which I had. It was almost a relief that he wanted to put me forward for it.”

Participants with previously untreated CLL are randomly allocated FCR or ibrutinib with rituximab, to compare the two.

Ibrutinib works by blocking Bruton’s tyrosine kinase, a protein that keeps cancerous cells alive, whereas FCR kills these cells.

Mr Auckland has taking ibrutinib since he joined the study in October 2018. He said: “I still get tired, I still get infections, but not as many as before. In myself, physically and more importantly, mentally, I feel much better.

“The real deciding factor for treatment is a bone marrow biopsy. A year ago it was at 95 percent infiltration of the cancer in the bone marrow and this October they couldn’t find any trace of the disease.

“My specialist said from my blood test results there was still some there, but I had made a remarkable improvement.”

Mr Auckland was well enough to travel with wife of 37 years, Breda, to Madeira in August. He said: “I’ve been given a semi-green light that my cancer is under control so I’ve got more confident to go further without picking up a strange infection.

The FLAIR trial is funded by Cancer Research UK with support from the National Institute for Health Research (NIHR).

Consultant Haematologist Dr Moez Dungarwalla, the study’s lead investigator at Milton Keynes University Hospital NHS Foundation Trust, said: “Ibrutinib has a lower risk of infections and side effects, which could potentially lead to significant improvements in quality of life for patients with CLL.

“Taking part in drug trials can also have great benefits for patients as it gives them access to new treatments prior to their availability on the NHS.”