Rob Steele – Aged 51 – 24/03/1970
I started to notice a small mole growing on the left side of my neck which I presumed was just where I had caught it shaving due to it bleeding. It gradually started to grow to approx 4-5mm, bleeding and itching I still didn’t think it was anything sinister.
My wife Mel said to make an appointment with my GP who at that time was a locum. He had a very quick look, said it’s nothing come back in 6 months time if anything changes. My wife was still very concerned so I booked to see another GP who said it doesn’t look right and would need a dermatologist.
I was referred to DR Mallet (Stamford hospital) who took a biopsy and called me 7 days later to tell me It was in fact skin cancer. I was referred to consultant Dr Moncrieff at Norwich hospital who explained that it is very dangerous, specially where it was located on my neck and it is Melanoma stage 1, I had no understanding of Melanoma nor that it can be an aggressive form of skin cancer. He then operated 3 weeks later on my neck (sentinel lymph node biopsy ). I had a deep incision on my neck and it was approx 3 inches long, with most deep tissue removed.
He also removed my lymph node in my left chest to perform a biopsy to see if the cancer had travelled to the lymphatic system.
3 weeks later 23rd December 2009 he called and told me it was all clear, cancer had been all removed and I was very fortunate. I was checked regularly every 6 months by Dr Mallet at Peterborough Hospital check for any unusual moles or lumps forming to make sure the cancer doesn’t return.
I was fit and healthy back to normal life until July 2015, woke on 23rd July feeling very disorientated, weakness or no movement hardly on my right side.
I was sick first thing in the morning and really couldn’t focus or understand anything that was happening. Paramedics took me to LRI (Leicester Royal Infirmary) where I had a CT scan which resulted in a front left lobe brain tumour. No idea how long it had been growing, but I can remember feeling very depressed a couple of months prior to this so maybe it could have been a warning.
I had further MRI’s scans where they also found lung, liver & chest gland tumours. Consultant had many conversations with my wife as I wasn’t capable of any understanding or had any mental capacity. My symptom’s (myself) were random light shows, language deficiency, memory, didn’t know who people were that came to visit or remembering family members, occasionally it did return and I could speak but its more off than on.
I was transported to Nottingham Queens Med after 3 weeks in LRI to have brain surgery, my operation was a huge success and after my operation I can remember firstly being very hungry and my speech had returned but not back to 100%. I still had memory issues, speech and a lot of weakness to my right side specifically my leg.
After returning home I went to see DR Guy Faust at LRI to have a consultation about what would happen next in my treatment. He discussed what treatments were available to me and gave me a rough prognosis of 6-9 months.
The first initial treatment was an Immunotherapy called IPILIMUMAB. A very powerful treatment which after all my recovery and brain operation my body was unable to benefit because of 0n-going toxicity levels, colitis & Steroids I therefore had to stop the treatment after 2 doses. My lung tumours were now growing rapidly so it was very difficult to deal with physically and mentally each day was a grind.
Most of my family were extremely supported but some thinking that after treatment everything is all ok and I am back to normal.
My cancer and the treatment’s take’s its toll on your body so looking after yourself and trying to avoid daily stress is quite a battle.
Weighing now 7 stone because of no appetite & colitis I was put on a relatively new treatment called DAB/TRAM targeted therapy which was called a wonder drug and would either stop the Melanoma spreading or possibly make the tumours grow quicker, I was happy to take the risk. I was now starting to get back to some routine and even started eating more to increase my strength, now learning to walk again by taking my wheelchair to our local shopping centre I would walk for 5 minutes then sit back down to rest.
I was a very fit cyclist so decided to moved my indoor trainer upstairs and started pedalling on my indoor trainer 1 legged (right side) to get the strength back, 10 mins and I was exhausted but decided to increase each day until I got to an hour before I took the bike out. I was on DAB/TRAM for 2 years and each scan showed complete stable cancer, not gone but stable. Sept 2017 – the wonder drugs stopped working and now my cancer was growing more in the chest gland and one now on my left lymph node under my arm. I was put on PEMBROLIZUMAB another wonder drug, was concerned that my colitis would maybe return which stopped me eating previously on IPI.
December had treatment, January had a seizure in our bedroom can’t remember much but was told by nurses at LRI that my potassium levels were very low. After many tests they found out that the PEMBROLIZUMAB had swelled up my pituitary gland resulting in a sudden drop of cortisol levels (Autoimmune hypophysitis). This was something else I had to deal with as they presumed I had Addison disease so was put on long term hydrocortisone. I no longer take this as my pituitary gland went back to a normal rate.
I was on treatments for every 3 weeks at LRI and my first scans showed a massive change in all my tumours, remained on treatment til January 2020 and after my PET scan showed now no activity I was told to come off treatment. I now have 3-4 monthly scans to check my cancer isn’t hiding out or ready to have a party again. I am very pleased how I have came through this journey so far and I am fully aware my life can be turned upside down again at any point and think I wouldn’t be here without not only the treatments but also my wife and close family support. I hope this can show you just being positive looking forward and never thinking about what could happen but take everything in each step along the way.
I am still left with fatigue, weakness, headaches and processing issues but am truly grateful to still be here today. Rob & Mel x