Adrian Warnock
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Joining the FLAIR trial

Adrian Warnock
Posted by
08 Sep 2018

After 16 months of watch and wait it’s now time for treatment for my CLL. I’ve opted to be part of the FLAIR study.

On April 28 2017 I was working as the medical director of a pharmaceutical company. I’d spent years working on clinical trials and communicating the results, and before that had worked for eight years as a doctor in the NHS. I had no idea I was about to become a patient and my life would change for ever.

That afternoon I was travelling home from my office on the underground. As I stepped off a train my legs suddenly buckled under me. I became very breathless, and my smart watch showed a fast pulse. I also felt my brain became fuzzy, like cotton wool. I was carried out of the station, taken to A and E by ambulance and diagnosed with pneumonia.

A couple of days later I was an inpatient at a different hospital. A doctor from the first hospital telephoned me to say they were almost sure that I had blood cancer. There was no support made available to me at the time.

It took more than two weeks to confirm I did indeed have Chronic Lymphocytic Leukaemia (CLL), and that as a result my immune system was weak. Perhaps we should have been suspicious years earlier when I had shingles twice, much younger than most people.

Many people with leukaemia do not die from the illness directly, but from an infection their body can’t fight off. Early diagnosis and careful monitoring could save lives.

If I had known about my leukaemia, I would have gone to the GP with the mild cough I had for a couple of weeks and perhaps avoided weeks of hospital treatment. A mild infection can be much more serious for someone with leukaemia. Like many men I rarely visited my GP before this illness. Now I am there often dealing quickly with infections and other symptoms.

My experience of ‘Watch and Wait’ has not been smooth. I have had multiple infections, been admitted to hospital several times, and needed two lots of surgery to remove the cancer growing in my throat (in my tonsils and lingual tonsils). I also experience severe fatigue and have had to stop working for now which was a major shock. I’m very fortunate that my company has an insurance policy which means I’m still being paid a proportion of my income, many are made destitute by getting a chronic illness.

I have been living in what some people call “CLL purgatory”. I was too sick to work, and was struggling to do very much, but not so sick that I needed treatment yet. I was on something called ‘watch and wait‘

For the first nine months my illness was relatively stable despite the operations I need. Since February it has sped up significantly. The number of cancer cells in my blood is now doubling every three months.

My fitness levels have dropped further and now I often experience an increased heart rate as if I was running when walking slowly around the house. My lymph nodes are also growing quite quickly.

My doctors said they wanted to start chemotherapy or similar treatment in the next few weeks, which prompts both the fear of side effects and the hope of improvement in my symptoms.

They asked me if I wanted to enroll in the FLAIR trial. The recent British guidelines for the treatment of CLL advise that it’s still the case that wherever possible patients with CLL should be treated in a trial.

The good thing about the FLAIR trial is it’s comparing three options of treatment all of which have been used before in CLL and have a license for that use from the EMA. The arms are all known to work. We just don’t know which one will work for longest for which groups of patients.

Having worked in clinical research for so long myself I decided it would almost be hypocritical of me not to volunteer now it’s my turn. I am glad to help future patients with my condition. But already I have realized I will be getting even better care than in the NHS normally. I am confident that whatever arm I am allocated to I will be carefully monitored and the research nurses will be there for me to ask any questions along the way.

I won’t be trapped in the study. If for whatever reason it doesn’t work, then of course I will be able to leave and get other treatments.

Right now I’m in a holding pattern and will have a CT this week and go back on the 25th September to hear what treatment I will receive.

Comments

21.09.2018

Thank you for writing this Adrian, it was very moving and interesting. I hope you'll keep sharing your story if you're able, of your experience of being in the trial and how you find it. I wish you lots of luck - Dawn