ALK positive - research and fundraise
Lung cancer charity

Kay's story

I had noticed some shortness of breath, as well as having a persistent cough, when I initially went to my GP in March 2016. I returned again one month later as I felt I was struggling even walking to the bus stop. I was studying Health & Social Care at Doncaster College as I planned a career in nursing. I remember one of my tutors describing living with Chronic Obstructive Pulmonary Disease (COPD) and me thinking I feel just like that. In April my Mum took me again to my GP, Dr Singh, who immediately spotted that there was a problem with the right side of my chest. We were sent to the Acute Unit at Doncaster Royal Infirmary where I was put straight into a wheelchair. We were laughing thinking they were over reacting and that started a tour of the hospital starting with a chest x-ray, CT scan, heart echo and biopsy of my pleural fluid. My right lung had completely collapsed due to fluid a condition called pleural effusion. I was admitted and pumped full of IV antibiotics as TB was assumed initially. The warning sounds were there as one of the Doctors told my Mum I think this is more than infection but she didn’t dare ask like what.

The next day a chest drain was fitted and I also had a biopsy of a lymph node under my right armpit. I felt absolutely horrendous, loads of fluid was drained, and I was completely wiped out. One of the Doctors spoke to Mum and Dad again the following day and delivered the devastating news that lymphoma was suspected. I spent the next 6 days in hospital, having more tests and a second chest drain and eventually we were discharged with the diagnosis of probable cancer. What seemed like a life time later we attended Weston Park hospital for a consultation with an amazing Doctor, Lucy Walkington, who specialised in cancer of unknown primary. While in the consultation her email pinged to confirm I had cancer as my biopsy result arrived from Doncaster. We were taken to the Teenage Cancer Unit by Shona Tuttin, a specialist oncologist nurse, where we shed a few tears then picked ourselves up with the help of her humour and the amazing staff who work on the unit. The following week we learnt I had lung cancer we couldn’t believe it. I was 17 years old, how was that possible? We met with Professor Hatton who said "I can’t get rid of all of it, Kay, but I can make you feel better."

After another few biopsies I started IV chemotherapy Cisplatin and Pemetrexed in three weekly cycles. I had four cycles over twelve weeks, a very tough time - two weeks feeling horrendous followed by a week starting to recover then back to horrendous again. I spent the summer of 2016 on the sofa watching the football Euros, followed by the Olympics. In August Professor Hatton said "...enough, lets get you on maintenance Pemetrexed three weekly cycles again", so only one weekend feeling horrendous. At last I was able to return to Doncaster College and back to hitting the town with my friends. I planned my first girls holiday to Ayia Napa but two days before the holiday I was readmitted to the Northern General in Sheffield as my lung had collapsed again - I was absolutely devastated. A week was spent there while my friends flew off without me.

Professor Hatton then put me on Crizotinib, fantastic, I was then able to move to Sheffield and start my nursing degree at Sheffield Hallam. I had a good 17 months on Crizotinib when Professor Hatton detected some progression so wanted to put me on Brigatinib. That took about three months as it wasn’t NICE approved but I eventually started on Brigatinib in March 2019. I am still on Brigatinib and have finished my course but COVID forced me to shield so I am now waiting to finish my placement. I have got a new job in Urology at Doncaster Royal Infirmary and I can’t wait to go back to work. I am living back in Doncaster and I am enjoying going out again as lock down restrictions are easing. I have received fantastic support from Weston Park, the Teenage Cancer Trust and particularly Shona who has gone way beyond the role of nurse in supporting me and all my family. Sally Hayton, who Mum spoke to through Roy Castle support site, recommended the ALK worldwide site set up by Merita and Tom Carroll. This has been invaluable to her for support and hope as worldwide sufferers share their stories. She has organised a few fundraisers over the years - Cake and Prosecco, walking, 5K RUN, 50 birthday fundraiser for ALK/lungevity, Teenage Cancer Trust and Weston Park. She did a skydive in 2019 for ALK positive Uk but as their focus is fundraising for support rather than research that is why she has founded Research ALK +ve to raise money specifically for research, which is her number one priority, she says, as a Mum. At the moment I am feeling good and living very well with lung cancer, with your help raising funds for research, long may this continue.

ALK Positive Case Study

Andy's story

My story began somewhere around the latter part of 2016. I had been complaining of being short of breath upon exertion and I was aware of wheezing when lying down in bed. I saw my G.P. and he referred me to a respiratory specialist.

I was sent to Good Hope Hospital, Sutton Coldfield for a breathing test. The test didn’t reveal too much wrong and my peak flow results (based on a whole month’s recordings) were right on the optimum level for someone of my age, weight and height. I was heartened by this. The medics decided that I was suffering from “Adult Onset Asthma”. I was prescribed two different inhalers, Clenil Modulite and Salbutamol. These seemed to offer some relief although something was still not quite right. I was still finding strenuous activities very problematic. However, I persevered with the inhalers as I had placed my trust in the hands of the so-called “experts”. Then, back in March 2017, I found myself starting a new job. At the age of 54 I was amazed that this had happened. My wife gave me a congratulatory hug. It was during this hug that she said to me "I can hear a crackling sound in your chest!"

I went to my general practitioner who listened to my chest and determined that it was probably a chest infection. I was prescribed Amoxicillin and was told it should clear up after a week or so. It seemed to clear up so I thought no more about it. Then, a few weeks later, as I was saying goodbye to my wife before setting off to work, she informed me that she could hear the crackling sound from my lungs again. I went back to my general practitioner who listened to my lungs again and prescribed more antibiotics as well as some steroids (Prednisone). Once again, this seemed to do the trick and I thought no more about it until a few weeks later when the audible crackling returned yet again. My wife informed me that my chest sounded like a three hundred years old Ascot water heater which had been filled up with extremely thick custard! I returned to the Doctor who referred me for a chest X-ray.

The X-ray revealed a shadow on my lungs and I was referred to a respiratory specialist at Queen’s Hospital, Burton on Trent. The consultant there sent me for a CT scan (which was first thing on 2nd January 2018) and organised a heart scan and a breathing test. On completion of these tests I was informed that the results were inconclusive. A second CT scan was organised and the results of that were, again, inconclusive. The consultant asked for me to undergo an EBUS Bronchoscopy + biopsy where they feed a thin tube with a camera on the end of it into the lungs. It was a thoroughly unpleasant experience despite the back of my throat being sprayed with anaesthetic. It tasted like a combination of banana and pilchard! They took samples of lung tissue and told me to go home and rest.

Eventually, on Friday 9th February 2018, I received a phone call to attend an urgent appointment with the consultant. I was informed at this appointment that I had lung cancer. It was a good job that my wife came with me and was able to take notes. As soon as the consultant said “Cancer” I entered a state of bewilderment. Everything he said went in one ear and straight out of the other one.

I was able to nominate my own choice of hospital where I wished to be treated at. After some thought, I chose the Queen Elizabeth Hospital, Birmingham. I am seen at the Cancer Centre by Professor Gary Middleton’s Oncology team. I was given an initial consultation on Thursday 1st March 2018 and this was where I discovered that the biopsy samples had shown my diagnosis to be Metastatic lung cancer with ALK translocation and PDL1 90-100%.

I have been taking 1200mg Alectinib (600mg in morning and 600mg twelve hours later) since 1st March 2018 and, to date, it has caused my tumours to be virtually nonexistent. The result of my most recent scan showed that I continue to be stable. I feel really well and, at the moment, I am leading a perfectly normal life.

Genuine ALK positive cases

ALK Positive Case Study

Sally's story

I was diagnosed with ALK Positive Lung Cancer in November 2013. I was very surprised to say the least that I had lung cancer as a never smoker it was a diagnosis that I hadn’t even considered. When I was first diagnosed after chemotherapy treatment with cisplatin and permatrexed, the only targeted medication that was available for me was crizotinib. However due to clinical research and advances several other new drugs have become available. I am now on my second targeted medication. Even though research has progressed in this area, further research is still needed to extend the lives of people with this disease and to find a cure to overcome it.

Genuine ALK positive cases

ALK Positive Case Study

Jamie's story

I was diagnosed with lung cancer at age 33.

To say my diagnosis was unexpected seems like an understatement. I had no noticeable symptoms, and had never really been ill much. It seems naive to say now but I had the mindset of being relatively young and I just didn't know something like this could happen. That all changed, on what was otherwise a mundane Saturday in April 2019.

I'd had a twitch in my thumb a couple of times in the fortnight before; I don't think anybody would think anything of that, but I felt it again. This time it sharply became a numbing pain and I remember calling for my girlfriend to help as i lost control of my body. I was having a seizure. The next thing I knew an ambulance was taking me to hospital, where I spent a week having scans and tests. They told me they had found something in my brain and lung. I had a biopsy and a week later it was confirmed, I had stage IV lung cancer which had metastased to my brain.

I can't describe how that felt. I could only think about my family. My son and girlfriend. My brother, his wife, my niece. My mum and step father.

The inhibitor drugs patients like me take, are personalised medicine, described as the future of treating cancer. The side effects are minimal and I'm able to live mostly a normal life, although in three month segments when I have new scans, hoping they are still working. My girlfriend is now my wife, I now have a nephew, my son is now 3. Life goes on but the inescapable truth is my life is in the hands of research. That and anyone, anyone can get lung cancer. We need more treatments, and a breakthrough for ALK could have dramatic effects on how we treat cancer as a whole.

Genuine ALK positive cases

The following week we learnt I had lung cancer we couldn’t believe it. I was 17 years old how was that possible!

Research ALK+ve

Lung cancer is shockingly under funded relative to most other cancers. There is a misconception that lung cancer is caused by smoking, so somehow sufferers deserve it, making it an unpopular cancer to donate to. Let us state right now that NO ONE DESERVES LUNG CANCER even if the wrong choices were made.

Because lung cancer research is so under funded, and ALK only affects 5% of lung cancer cases, research into ALK needs relies heavily on public fundraising if we are to achieve the same groundbreaking advances and success rates as other cancer treatments.

So, at Research ALK+ve our aim is a simple one - to raise much needed funds which will be used specifically for research into alk positive lung cancer. The distribution of the money raised will be carefully considered by our trustees to ensure that it is targetted at research that is more likely to succeed, or make a greater impact, within a reasonable time frame.

Trustees and Associates of ALK+
As soon as the consultant said “Cancer” I entered a state of bewilderment. Everything he said went in one ear and straight out of the other one.