Date: 14 September 2017
A PhD student being treated for blood cancer has encouraged patients to learn about NHS research after a new trial drug helped him get out of bed again by himself.
Oxford’s Thomas Nealon is now able to regularly commute to London’s Brunel University thanks to a drug - given to him as part of an NHS trial - which has eased pains from his Multiple Myeloma (MM).
He spoke during National Blood Cancer Awareness Month (September), an annual drive to raise awareness of the symptoms of blood cancers, which are vague and often confused with other illnesses.
Multiple Myeloma is a type of cancer that causes plasma blood cells inside the bone marrow to expand, damaging the bones and affecting the production of healthy blood cells.
Researchers are conducting a trial to see if a drug, taken with two others, is more effective at making the cancer go into remission than a stem cell transplant, which can cause complications.
The 39-year-old was diagnosed in October 2015 with MM, for which symptoms include weak bones, tiredness, shortness of breath and repeated infections.
He enrolled on the “Carfilzomib/Cyclophosphamide/Dexamethasone with maintenance carfilzomib in untreated transplant-eligible patients with symptomatic MM to evaluate the benefit of upfront ASCT” (CARDAMON) trial after his diagnosis.
Mr Nealon said: “I was almost immediately offered the CARDAMON trial when I saw my doctor because it had just started up and they needed people who had just been diagnosed, so that they could have a trial where nothing else would affect the result. I was in the right place at the right time.”
Patients on the trial - run by University College London - are treated with the trial drug carfilzomib as well as current chemotherapy drug cyclophosphamide and steroid dexamethasone.
The aim is to see whether participants are able to maintain their remission period - the period where they are free from cancerous symptoms - without having an Autologous Stem Cell Transplant (ASCT), the current treatment.
ASCT involves taking healthy stem cells from the blood or bone marrow of a patient and using those cells to replace damaged ones.
ASCT is used because studies have shown an increase in overall survival. However, the procedure requires three weeks in hospital and has an increased risk of infections and fatigue.
Mr Nealon said: “When I was diagnosed I was just blank. I was trying to stop myself jumping to conclusions because it’s quite unusual in that people don’t really know what it’s like compared to something like leukemia, people know what to expect and that it’s going to be really rough, but they stand a better chance.
“When I started treatment, I couldn’t get out of bed unaided. Like with all cancers, little problems like tiredness suddenly reach a crescendo with all these different side effects.
“I was thinking ‘I’m lucky I don’t have a physical job’, one guy I met was a scuba diving instructor and I don’t think he could do that anymore because of the damage.
“Now I can stand up and move around and drive a car to meetings and walk the dogs whereas before it took me an hour to walk around a tennis court.”
Patients on the trial have stem cells collected from their bone marrow and frozen for later use and are randomly allocated to receive either ASCT or further treatment with the trial drugs.
After patients have completed either the drug treatment or ASCT they are given a maintenance treatment of carfilzomib alone for 18 months.
Carfilzomib was this year made available to eligible MM patients in the NHS and researchers want to determine if this is a better option to delay ASCT.
The CARDAMON trial is recruiting participants at the Oxford University Hospitals (OUH) NHS Foundation Trust until May 2018.
Mr Nealon, who was treated at OUH’s Churchill Hospital, Oxford said: “Thanks to treatment, I can take public transport, I can wander around London and take the underground. That’s quite a chore for anybody so if I can do it now, I think that’s a good example of how much better I’m feeling.
“When it was obvious how much it helped me, I went to my local support network and looked at all of the people who had been diagnosed later on in life and had been treated and thought ‘well I hope this is used to help them’.
“As it’s National Blood Cancer Awareness Month, everybody who knows somebody who has a condition like multiple myeloma should realise treatments are progressing really fast in this area.
“I’m pleased that now it’s not just for people who happen to be young and relatively healthy and just been diagnosed, it’s being rolled out to everybody who needs it.
“It’s made a great improvement in all of our lives; this research is amazing.”
Dr Jaimal Kothari, consultant haematologist at OUH’s Department of Haematology, said: “The three drugs used in this trial work together to kill plasma cells, which are the malignant cells in MM.
“Carfilzomib is the most active drug of the three, and belongs to a class of drug called proteasome inhibitors.
“These are very effective drugs in MM, and research is actively going on to try and work out the how to combine carfilzomib with other active agents to optimise its effect, and minimise toxicity.
“One of the key questions in this trial is around the pros and cons of delaying the stem cell transplant. Most patients who go on the study will still have the transplant eventually, but later in their disease course.
“We still have a huge amount to do, myeloma is still for the vast majority of patients something we can control, but not cure and most patients die of their disease.
“We need to continue to perform research from the laboratory bench to bedside so we can quickly turn scientific understanding into tangible benefits for patients.”
Multiple Myeloma is uncommon, with around 4,800 new cases diagnosed each year in the UK. It is most common in men over 60 and rarely affects people under 40.
The CARDAMON trial is supported by the NIHR Clinical Research Network Thames Valley and South Midlands, which is part of the National Institute for Health Research, a Department of Health-funded organisation that provides funding to get trials up and running in the health service.
Research helps develop better treatments for conditions like cancer to improve NHS care.
This includes trials of new drugs to test whether they are more effective than current treatments.
Patients are encouraged to ask their doctor about research opportunities and view trials seeking volunteers at The UK Clinical Trials Gateway www.ukctg.nihr.ac.uk.