At the end of 2015, I seemed to have a constant cold and cough, it just went on and on. I blamed the children for bringing bugs home from school. The cold eventually went but the cough stayed.
Around February, my husband nagged me to go to the doctors, and I came home with antibiotics. When this didn’t help, I went back to the doctor who prescribed another round of antibiotics but said if it persists, I would be sent for an x-ray. I went for an x-ray while on my third lot of antibiotics to which looked fine but for a bit of infection so started on stronger antibiotics number four. During all this time the cough was worsening and I was constantly coughing up clear fluid.
One Monday, I was at my desk at work, when all of a sudden it felt like I had a ton of bricks on my chest and I felt pretty rough. I had yet another doctors appointment for that evening as knew by this point something really wasn’t right. I came home and went to lay down waiting for my husband to get in as I’d called him. He said to me good job you’re going to the doctors tonight and I just said no, call me an ambulance. By now it’s early May so I’ve been coughing for over 5 months, and I’m admitted immediately with double pneumonia. They couldn’t get my sats up and the oxygen wasn’t helping so I was sent to icu where I remained for 8 days while they stabilised me. After that I was back on the ward for a couple of days then I was allowed home to recuperate.
Recovery was slow to non-existent and I literally had no breath. I received a call from the lung clinical nurse specialist (cns) Nicky as a sputum test had come back abnormal. I had a broncoscopy that came back inconclusive. I then had a biopsy taken from my left lung. 25th July 2016 I was told I had stage 4 lung cancer. I had just turned 45. I had cancer on both lungs. It was quite a rare type as I didn’t have actual tumours but cancer in the individual cells of the lungs so it kind of looks like infection.
It was the first day of the school summer holiday, I just said no, I can’t die. I was blindly led to an oncologist who immediately offered to get me on a trial, which I jumped at.
A sample from the biopsy was sent to America to see if I was compatible. I was going downhill fast by this point, couldn’t walk up the stairs without stopping for a breather. I was so breathless and I had clear fluid almost pouring out my nose and constantly coughing. I remember feeling so helpless as I was unable to do any housework or even walk my kids to school (I had two girls at primary aged 7 and 10 and a son in secondary aged 12).
I got approval for the checkmate trial and there were three arms of treatments that were picked randomly and I was chosen to have chemotherapy. I was disappointed at first that I wasn’t picked for immunotherapy, but things turned out the way they were supposed to.
I started on cisplatin and premtrexed every 3 weeks and after the first session, the next morning my nose was dry and I was excited over having a bogey. Within a couple of weeks, my cough was gone. Chemo was rough for 10 days for the 6 cisplatin cycles I received but I got up everyday and dressed before the children went to school, both for my benefit and the kids. Trying to keep a bit of normalcy.
I continued on with the premtrexed for 2 years, but the damage to my kidneys was becoming critical. The trial wanted me to continue, and my oncologist said she would recommend to a patient not on trial to discontinue. I came to the decision to discontinue. It was a very scary decision to make and I felt bereft by it, but it was the right choice.
It was around this time, summer 2018 that the oncologist was looking back through my notes and discovered I had the ros1 mutation. She ensured me this was good news and opened up treatments when I needed them again.
I had 18 stable months without treatment which was bliss. My scans at the end of 2019 showed some growth so I was put straight on crizotinib.
My kidneys didn’t like it at first when I started on crizotinib, so I was on weekly blood tests. It was great all through lockdown that I escaped for one afternoon for blood tests. Although meeting a phlebotomist in a supermarket carpark had a seedy feel to it (they were in a legit mobile van), I enjoyed my outings, no traffic and a bit of me time. I ended up on more than half the dose I started on, 200ml a day.
I continued on with crizotinib for over four and a half years. I had a routine brain mri in early April 2024. Results came back clear. Probably less than a month later I started feeling a bit dizzy when I stood up and wasn’t balancing very well in yoga. My friend Clair, who is stage iv ALK, nagged me to call the cns team. I myself wasn’t worried as had had the clear mri, so thought it might be inner ear infection so tried the epley manoeuvre with no effect. I eventually gave in and rang the cns team.
With the guidance of the oncologist, cns Mandy rang me and told me A&E was expecting me and to go straight there. I had a ct scan of my brain which was inconclusive, I was admitted with the possibility of a lumber puncture.
I’m so fortunate that my oncologist team is so active at my local hospital as has a weekly clinic . They cancelled the lumber puncture, put me back on crizotinib when they took me off it at admission and ordered an mri.
During this time, I was deteriorating fast and I knew what was coming. It was devastating watching my family sit by my bedside yet again while my future was unclear. I think them now being 15, 18 and 20 made it harder as they are more knowing. I had another brain mri (is now a good time to mention I’m claustrophobic?), my oncologist Alex Georgio sent my previous mri along with the new mri to be read by a specialist at kings college hospital. The results were in pretty quickly and I indeed had progression in one of the linings, the leptomeningeal part, which is hard to treat (I assumed that meant radiotherapy was out). Reading up on it as well, the outcome looked pretty bleak. Time definitely was of the essence.
Alex immediately applied to NHS England for entrectinib and also to Pfizer for lorlatinib on compassionate grounds. We were literally now playing the waiting game.
I had no idea until this point, that because I already had first line treatment, I wouldn’t automatically be eligible for the treatment available on the NHS. I was throught with stress and worry at the time, but have since learnt that entrectinib wouldn’t necessary work much better than crizotinib in the long run as very similar and only works marginally better. NHS England turned down the appeal.
Alex came to see me with the fantastic news that Pfizer had responded and had agreed to fund lorlatinib. I was totally over the moon. I was deteriorating rapidly at this point and could barely cross the room unaided without falling. I was discharged home while Alex waded through the mountains of paperwork.
Alex arranged to see me Guy’s Cancer Centre to get my first cycle of lorlatinib. It was made clear to me that if Pfizer decided to pull funding in the future, the hospital/NHS wouldn’t take over funding. That was a worry for another day. I was aided to Guy’s by my husband Gary and my mum. While there, I saw the physio team and was given a granny trolley with a seat. I was passed embarrassment by this point!.
Alex checked me over, there was a concern over my vision. I had double vision and was given a tape over one lens when I was sent to the eye hospital when an inpatient. It was caused by pressure. My retinas were extremely swollen. I had to wait about two hours, but walked out with the lorlatinib in the basket of my new trolley.
I started them that evening. Within a couple of weeks my dizziness and headaches had started to subside. Alex was pleased with my progress when he next saw me and new brain mri and lung ct scans were booked.
I had a meeting with Emma, one of the physios at Guy’s and she put together an exercise routine to help me rebuild my muscles and fitness. We mainly had our appointments via video link but we did have a session at the gym at Guys. This was very beneficial to me. I had slowly put on weight over the years with crizotinib and with weight gain and cholesterol being among the side effects of lorlatinib I knew I had to change. I have now changed my lifestyle with exercise and healthier eating (I’ve basically cut out carbs). After a few weeks I felt so much better.
I was seeing Alex for scan results and I knew there had to be some improvement. Apart from the double vision, I had improved tenfold. I could walk without the trolley and was using a stick occasionally. First was the brain mri. After 8 weeks on lorlatinib, there was no evidence of disease. The lung ct also showed no evidence of disease after 8 years. I was totally dumbfounded.
Alex told me not to get too excited, to get another scan under my belt. Sorry to say, I ignored that advice. I was celebrating this. If it shows different next time, so be it. The feeling for these three months has been amazing. I have always been pretty laid back and have taken things in my stride. But I feel so much lighter and for as long as I can keep the beast at bay, I’m going to treasure it. Another plus is my vision has returned to normal. I’m so lucky there hasn’t been any lasting effects.
A massive thanks and gratitude of course goes to Alex Georgio. I cannot put into words how grateful I am. I’m also super grateful to the CNS team at the PRUH in Orpington. Nicky, Mandy and Karen visited and supported me in my darkest times. They are absolutely amazing and their knowledge and enthusiasm rolls over to the support group Everybreath Lung Cancer Support, which I have been involved with for a number of years also. I am now one of the charities trustees.
Going into 2025, I’m full of thankfulness and optimism. My youngest daughter will be sitting her GCSE’s. At the beginning it didn’t look likely I’d get to see her finish primary school. My middle daughter has trained as a hairdresser and is thriving. My son is training to be a personal trainer while working as a builder. I’m lucky I get to see this and also give others hope at the beginning of your diagnosis that all is not lost. I’m not dying with stage iv cancer, I’m living with it.
