Interview: Clinical trials patient, Lyn Barrington

Theatre nurse, Lyn Barrington, also a former colorectal nurse specialist, describes her experiences of being diagnosed with lung cancer and of her journey to being accepted on an immunotherapy trial. With many thanks to Lyn for all her time, commitment and honesty.

It took two years for your cancer to be diagnosed. Why did it take so long?

I started coughing at the end of 2009, probably about November time. Just an irritating cough really. I didn't actually go to the doctors until June 2010 because I was in between jobs. I thought it was just a bit of a tickle and it probably wasn't really anything. It sounds really stupid but I didn't feel ill. I didn't have any other symptoms and I just thought it was nothing really; nothing to worry about. Eventually I went to see my doctor who asked my smoking history, I said I’d never smoked and I was sent for a chest x-ray. The results said there was nothing there.

Within a few weeks, the cough was getting worse and worse to the extent that I couldn't really hold a conversation without coughing after speaking just a few words. I'd just got a new work contract  in Oxford,  and I think I'd only been working there for about three weeks when I collapsed with pleuritic chest pain. This is now November 2010 so I've now been coughing for a year, as daft as it sounds.

I was admitted to A&E and was put on some monitors but everything was normal. Blood pressure was normal, pulse was normal, heart rate was normal. Respiration rate wasn't normal because I couldn't really breathe. My temperature was normal. I had an x-ray which once again showed nothing. The blood test showed an increase in the inflammatory markers so they then thought I had had a pulmonary embolism. I was thinking, how on earth could that have happened? It didn't really ring true. Anyway, they sent me for a VQ scan. That showed that there was no blood clot, but they did say that there was something on the base of my lung. I was then sent for a CT scan. I was admitted to hospital over the weekend and given IV anti-biotics; they had diagnosed me with pneumonia and pleurisy.

I then had a week off work and another week of antibiotics but I wasn't feeling any better. I went back to see my GP two weeks later. I was given more antibiotics. I went back again after another two weeks as I still didn't feel any better, still coughing and still having the pain. I was told that it takes up to nine weeks for pneumonia to resolve, so to go away and come back after nine weeks if I still didn't feel any better. After the nine weeks, I went back again as by this time I could also feel a 'grating' in my chest when I breathed.

I was sent for another x-ray when a lateral view was also ordered. I was then told at the hospital that they wouldn't do a lateral view because they said they didn’t do them as standard (even if it's requested by the GP). I did say that without the lateral view they wouldn't see if the 'mass' had gone as it had never showed up on a standard PA x-ray and how else were they going to see if it was still there? The radiographer then spoke to the radiologist who agreed to do the lateral view.

The GP then sent me a letter telling me the mass was still there and now I'd got pleural effusion. I was sent another x-ray form and asked to have this x-ray repeated in three weeks to see if it was still there. After three weeks it was still there.  I told the GP that I was getting really worried now, and at this point I'd actually coughed up a blood clot. I'd never coughed anything up before. My GP referred me to see a thoracic medicine doctor at this point. It was now January 2012, but the referral came through for May which was five months away. I just thought, I can't wait until May because I now was feeling quite unwell. I actually phoned the hospital about who to see privately and spoke to a nurse in the thoracic medicine department who happened to be a lung cancer nurse. She said that my symptoms warranted an urgent referral. I went back to my GP and this time got a referral for two weeks’ time.  I went to see the thoracic medicine consultant, he was the first person that mentioned that, yes, my symptoms could be an unresolved pneumonia, but he also said it could be a slow-growing tumour (as in adenocarcinoma). At that point I just got scared. He said we'll do a bronchoscopy tomorrow to get a biopsy and see what we are dealing with. I visited him again the following week for the bronchoscopy results, they were all 'inconclusive' as the 'mass' was to low down to reach. I was then sent to see a cardiothoracic surgeon at another hospital with a view to doing a VATS biopsy. In the meantime, I was sent for another CT scan looking at my chest, abdomen and pelvis. Now I knew it was serious, they were obviously looking for something. The surgeon told me that a VATS biopsy wouldn't work as the instruments would not reach the 'mass' as it was too low down, therefore I would have to have a thoracotomy. I asked when he wanted to do it and he said 'this week'.....

When I woke up from the surgery one of the surgeons and a nurse came to see me, the nurse was crying. The surgeon just said, I'm really sorry, we couldn't do anything. He said the main tumour was 11cm and there were multiple smaller tumours throughout my right lung. I also had a malignant pleural effusion.

As a medical professional, did you feel more prepared when you were finally diagnosed?

I think my reaction would have been the same if I’d not been a nurse: how has this happened to me? how on earth was that ever missed, an 11cm tumour? How long have I had it for it to be 11cm?

I now know how it was missed; when they perform a standard chest x-ray it doesn't see below the diaphragm. What I've since found out is if you've got adenocarcinoma it develops around the periphery of the lung, so if it's at the top or the middle edge of the lung you'll see it, if it's at the base of the lung you won't.

It really is quite frightening. But at that point I just thought: oh my God. I mean, I'd been a bowel cancer nurse in the past, I was a stoma nurse, I had cared for bowel cancer patients. I knew what stage 4 meant with cancer. I knew the prognosis of lung cancer. I knew lung cancer had one of the worst survival rates. So at that point you just think: oh my God. I remember telling the surgeon, (he came to see me the following day): 'I've got so much to live for'.  I thought ‘this can't be happening to me’. I wanted him to give me some hope.

He just said 'I'm really sorry, I just suggest you get on and do everything you want to do then'. When you hear words like that, you just can't believe they're being said to you.

With the surgery, because I'd been a theatre nurse I think that's what made it worse for me as I knew exactly what they were going to do.  When I woke up on the high-dependency unit – obviously I knew I'd have an arterial line, monitors, catheter and drains. I just thought they would tell me the operation was a success and they had removed the mass.

What treatments did you receive prior to being accepted on the trial?

I knew I couldn’t have radiotherapy because the tumour was too close to my heart, but my doctor said not to give up hope. He said they'd taken quite a big specimen and they'd sent it off for genetic mutation testing. He did say there was a new drug, Iressa, that had not been long licensed by NICE which was a targeted chemotherapy and if I tested positive for the mutation I could have this new treatment. I had to wait three weeks to find out if I had the genetic mutation. I've spoken to some patients since who've said they wanted to start their chemo straight away to give themselves the best chance. I just thought, no I'm going to wait the three weeks, because I've waited God knows how long already. I was told that only 10 per cent of Caucasian people have got this EGFR mutation. However, I've since found out that if you're female, under 50, have never smoked and have got adenocarcinoma, there's a 50 percent chance you've got a gene mutation. So the odds are quite high really if you're younger with cancer, or with lung cancer at least. Anyway, I did have it. I had the EGFR mutation. So I started the targeted chemotherapy on that day.

They did say to me that the treatment wasn’t supposed to shrink the tumour, just to make it stable. But when I had my first scan my tumour had shrunk by 20 per cent. So it had gone from 11cm to 8.5cm, which was great news in six weeks. Next scan, the tumour was collapsed and immeasurable. We booked a trip to Jamaica there and then.

How did you find out about the trial and why did you agree to go on it?

I was now focusing on my bucket list. We’d been to Las Vegas, Wisconsin, San Francisco, Mexico. After the Mexico trip, that took me to 20 months on Iressa. Every time I'd been on a trip I came home with a bit of a cough/chest infection from the air conditioning on he plane. I'd normally just have antibiotics and then I'd be fine within a week. But after Mexico the cough didn't go anyway. They scanned me and the tumour had started to grow again. At this point it had gone up to 3.2cm. After that, they watched me for six months, but by this time I had become more symptomatic.

I went to a talk at the local cancer group and there was an oncologist there called Simon Grumett who was talking about how good these new targeted drugs were. So I kept in touch with him after the seminar by email. When my oncologist retired I emailed Simon to say I had progression and he suggested I get referred to him and that there were clinical trials or I could try Afatinib.

The criteria for getting Afatanib was that I had to show that I had failure from platinum-based chemotherapy first. At that point it was June 2013 and I needed to start treatment so I went on to Cisplatin and Pemetrexed.

It was horrible. After two cycles, the tumour shrunk by 3mm. After four cycles, which was all I was having, it was stable. I did have the option of going on to Pemetrexed maintenance, but I hated what the steroids had done to me. I'd gone up to over 11 stone which is like two and a half stone heavier than I am now. I looked and felt terrible, I looked like a 'patient', which I hadn't done before. Within five weeks of finishing treatment, I had started coughing again so another CT scan was ordered. It showed the tumour had grown by 7mm. So really you could safely say platinum based chemo didn't work for me at all. By this point Boehringer, who make Afatinib, had had it licensed for first-line use, which meant getting Afatinib was no longer on the cards. I could have paid for it, but it would have cost me about £2,500 a month. When you don't work and you've got cancer, how can you afford to pay for that?

At this point Simon, my oncologist, said, look, there's some really good immunotherapy trials going on at the moment. He said there is one recruiting now. There were 10 places for the UK. All I needed was to have this PD-L1 marker in my tumour – which is the criteria for acceptance onto the trial. I had another tumour biopsy done and I tested positive.

Can you tell us what it’s like to be a patient on a phase 1 trial? Does being a nurse change your experience do you think?

Initially, I always used to view clinical trials as being the last resort, because it is experimental and you don't know whether it's going to work or not.

But I did a lot of homework and found that there had been previous immunotherapy trials, and this drug in particular, MK-3475, had been trialled on patients with malignant melanoma with some fantastic results, I think around 54 per cent response rate. I think I would feel differently if this was the very first one, where nobody really knew.

My next option would have been Docetaxel, the response rate to that was nine to 12 percent; I would have lost my hair and looked like a 'patient' again. With the trial, they said that, if you've got the PD-L1 marker, the response rate is 24 percent. So I'd almost double my odds being on this trial than if I’d been on Docetaxel. So to me it was a no-brainer really. If you're a betting man, what would you go for? Nine to 12 percent odds or 24 percent odds?

The first scan after nine weeks on the trial showed that the tumour had actually shrunk slightly but the main node had grown. Initially, I felt quite disappointed because my cough had noticeably improved and I convinced myself it was working.  I did a bit of homework, looked on the forums and at all the research, which said that that was what they normally expected to happen, because it's almost like the immune system is being kick-started, so it has a bit of an ‘oh what's going on’, and you get a bit of a pseudo-progression sometimes.

Is there any advice you would give the research community about your experiences?

To be honest, I think because I'm the only one they've got in the whole of the midlands area, everybody's rooting for it to work because they really want it to set a benchmark for other people. I know the team that I've got around me are available when I want to speak to them. If ever I've got any concerns they're always there. I feel very well looked after because I'm on this trial, more so than if I were just having standard treatment, because it is a trial and nobody knows what to expect. I just want them to know how extremely grateful I am to be given this chance and just how important all the work they do is for people like me.

You are now very active in communicating your experiences. Why is this important to you?

It has been important to me right from the word go. I'd say probably six months after diagnosis when I had got over the surgery and started to do well on the treatment, I realised that lung cancer was like the poor relation, and there was nothing out there for lung cancer patients. I was thinking, if lung cancer's the biggest killer, where are all the supporters and advocates?

I thought, no, I'm going to change this; I'm going to start shouting it from the rooftops. I'm going to make it into something you shouldn't be ashamed of. It deserves as much help as any other cancer, although you can say 80 per cent is attributed to smoking, smoking causes so many other illnesses as well, but the same stigma isn't there with those. Plus, there is a sizeable number of people like me who get lung cancer who have never smoked.

I think it’s probably valuable having patients speaking to the research community about their experiences, because it does reiterate why they're doing what they're doing. This is some of the feedback I got when I was down in London for the ECMC meeting:  you do your job day in day out, but to actually see somebody who has benefited from the work that you've done has got to give you that sense of really making a difference to people, not just on paper.

I started writing a blog from the beginning of this journey and also promote things on twitter and Facebook where I have started my own group, I Am A Face Of Lung Cancer. I’ve even been on Central News and Midlands Today a few times too. Recently, I presented for AstraZeneca at BTOG, and talked as a nurse about a patient who had lung cancer, only revealing I was that patient at the very end. So I do feel as if I'm actually getting somewhere now with all my campaigning

What would be your message to the research community?

Thank you for all the hard work you're doing. Please keep it going because people like me really depend on you. It is the difference between having hope for the future and despair from such a diagnosis as lung cancer.