The 15th September is World Lymphoma Day, a time to raise awareness around symptoms and diagnosis. To mark it, Mike has written about his experience of being diagnosed and the treatment he received.
Mike, from Inverness in the beautiful Highlands of Scotland, is married with two daughters and four granddaughters. He was diagnosed with Non-Hodgkins Lymphoma in 1999. He also has his own blog called Thehighlander’s journey.
I often refer to my 19-year journey with Non Hodgkin’s Lymphoma as my Magical Mystery Tour.
Lymphoma is the fifth most common type of cancer in the UK. It can occur across the age ranges including children but it is on the whole very treatable with people living for many years after being diagnosed. But the diagnosis of Lymphoma can be long and drawn out as Lymphoma can be very hard to identify. Some of the treatments used can be full on and on the whole Lymphoma can not be ‘cut out’ It takes a very clear treatment plan that can take months to years to complete.
Lymphoma is a cancer of the lymphatic system. The body is made up of cells that need to be replaced as they age or are damaged. This happens through cell division, which is when a cell divides and makes new copies of itself. Normally, cell division is carefully controlled. But sometimes this process can get out of control. Too many cells may be made and a cancer, such as Lymphoma, can develop.
In Lymphoma, our White Blood Cells called Lymphocytes become abnormal, these are the Lymphoma cells. Usually the body’s immune system destroys abnormal cells. But Lymphoma cells are often able to avoid the immune system. This means they can keep dividing and grow out of control. Over time, there are enough Lymphoma cells to form a lump. The most common place for this to happen is in the lymph nodes.
But lymphoma can start growing in other parts of the body. Lymphocytes travel around the body. This means that Lymphoma can spread from where it first started. It can spread through the lymphatic system from lymph nodes in one part of the body to lymph nodes elsewhere. Lymphoma cells can also travel in the bloodstream to organs such as the bone marrow, liver, lungs and skin. The cells may then keep dividing to form a new area of Lymphoma.
There are over 80 types of Lymphoma with the two main sub-types being Hodgkin Lymphoma and Non-Hodgkin Lymphoma and are often treated in different ways.
For me, my journey with a rare type of Cutaneous T-Cell Non Hodgkin’s Lymphoma started in 1999. I had none of the normal lymphoma symptoms, no lumps, bumps, night sweats or fatigue, just a very itchy skin rash. My GP did all the blood tests and nothing was showing: he worked through the normal skin treatments for dermatitis, eczema and psoriasis but nothing was actually doing the job. So after 8 - 9 months I was referred to dermatology. A surprising quick appointment came in. My dermatologists had an initial look at me then sent me for a CT scan and bloods. At my second appointment he said that nothing was showing but he was convinced I had a very rare type of Cutaneous T-Cell NHL known as Mycosis Fungodes. It actually took 6 biopsies to finally find the problem cells under the microscope. It had taken over 20 - 21 months to get my diagnosis.
He told me that my condition could remain stable for many years but I would have to have regular skin treatments. So for 14 years I was treated with creams and retinoid drugs basically treating me for very bad psoriasis and at times I had 70% body coverage. I was having 20 weeks a year, 3 sessions a week UVB treatment where I was exposed to ever increasing UV rays. After three years this become ineffective so started 20 weeks a year 2 times a week having PUVA treatments where I was exposed to unfiltered UVA rays and was taking a drug called Psoralen that made my skin absorb the UV rays clearing up my skin.
But in early summer 2013 a small lump appeared above my right eye and within 4 weeks it was the size of a tennis ball and it had attached on to my eye lid closing my eye. I was fast tracked to oncology and radiotherapy was the next step. I was told it was 50/50 that my right eye could be damaged but I did the 'Man in the Lead Mask’ thing, had 5 sessions of radiotherapy and it was gone in 5 weeks leaving a little indentation on my forehead. But as my dermatologist told me back in the year 2000: “you are living with a time bomb” and it had just gone off.
Almost immediately after my radiotherapy the Lymph-nodes on the left of my neck reacted so I was now fast tracked to haematology. It did take a few weeks to get the referral, CT scan and biopsy and during this the time the Lymph-nodes were getting bigger but eventually the Haematologist told me that: “your condition is life threatening” and “we can give you about two and half years on the clock and the only way forward is 6 cycles of strong chemotherapy and a very successful Allogenic Stem Cell Transplant (SCT)”
So I started my chemo just before Christmas 2013. It looked like I had swallowed a brick! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and were coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. My initial 15min blast of chemo got me through our family Christmas. It was amazing the difference that first chemo blast made, to the point that I actually had some Christmas dinner!
(the amazing view from Mike’s back yard)
I went on to have 6 Cycles of R-EPOCH - 5 days of 24hour a day continuous chemo. By the end of my 2nd/3rd cycle the swelling was well down. The final cycles were used to further control the condition. I had 720+ hrs of chemo! I got through the chemo ok but my hair was like snow when the sun comes out.
June 2014 I went on to have my first Stem Cell Transplant (SCT). I had an allogeneic blood related 10/10 donor match SCT with cells from my brother. I was in the SCT Unit in isolation for about four weeks and was released home to see what would happen. The SCT did not actually work out as planned so by Christmas 2014 the SCT had failed.
So my team told me to go away, have some R&R and build myself up and then I went back in October 2015 for a second and final attempt. The second SCT was very traumatic, I ended up in ICU as my team were very concerned I was having a heart attack. Then re-admitted a few days later with a fib and a suspected stroke. But my blood counts went up and after 4 weeks I went home.
The following 16 months post second SCT were very hard work. I was walking with walking sticks for three months, could not drive and needed a wheelchair to get me through the hospital to get to clinics. The fatigue was extreme and I spent lots of time in bed but always got up and had a shower regardless of how I felt. We live a 9 - 10 hours round trip away from my SCT Unit so we had to do the journey once a week for the first 4 weeks then moved to every second week then after 2 months on video conference.
So, between September 2013 to June 2018 I had 115 days in hospital: 45 radiotherapy sessions, 800+ hours of chemo, 2 Allo SCTs, 2 Trips to ICU, 4 visits to hospital with chest infections, lung fungal infections, the RSV virus, pneumonia, sepsis and two months of low blood counts caused by GvHD so regular blood transfusions every second week and GvHD of the skin. I was left with peripheral neuropathy in my hands and muscle pain in my neck and legs.
My Magical Mystery Tour took me on a journey that was full of magical treatments. I found it mystifying as to what my team did, taking me on a Tour that has lasted 17 years. In September 2016 I was told I am in remission for the first time in over 17 years.
My wife and I see the past 19 years to be a test of how much we wanted to hang on to this life we have been given to live. Some of our survival slogans are:
Questions about Non-Hodgkin Lymphoma? Join our Non-Hodgkin Lymphoma group and start a discussion today.
