“In December 2012, I had an egg-shaped lump on the side of my neck, so my wife Helen made an appointment at the GP. I had blood tests and a urine sample taken, and I was subsequently referred to the hospital.
Within a few days, they had removed the lump for a biopsy and I was told they would let me know the results as soon as possible. I received a call to attend the hospital on Christmas Eve where Helen and I were taken into a room and I was diagnosed with leukaemia. I was told that I would receive an appointment from haematology to let me know more.
We went to the hospital in the new year to meet my consultant. They explained my particular diagnosis of chronic lymphocytic leukaemia (CLL) to me, and what treatments would be available. Despite our discussion on treatments, they opted to put me on Watch and Wait as they believed it could be a few years until I would need it.
Fast forward to New Years’ Eve 2013, I was told that my CLL had quickly progressed and I would need treatment. I started the treatment in January and it was to be six rounds of FCR. 10 days after the first round of chemotherapy, I had an infection and ended up in the hospital for a week. We also discovered I was allergic to allopurinol and I had a severe reaction at the same time. Once recovered, I was able to return home however it was only a few days before I was readmitted due to another infection.
After my second round of chemotherapy, I was really poorly with pericarditis and therefore hospitalised. The consultant wanted to give me a month before my next round of chemotherapy and they wanted to cut my schedule to only three FCRs, but I wanted to continue to have all six and by doing so I was in remission.
For three years, my bloods were stable and I continued to see my consultant. However, I was starting to feel increasing pain in my side, so I visited the GP who booked me in for an ultrasound of my stomach.
A day later, I was told I had lesions on my liver and that my CLL had evolved into a Richter’s transformation of non-Hodgkin lymphoma. I was admitted to the hospital with a temperature and they went on to do a liver biopsy. That afternoon they confirmed my diagnosis and I was starting treatment the next day.
I was in complete shock upon hearing about the transformation; I was told it was very rare and survival rates were very low. I had just assumed that my CLL had returned, so I was very worried. The day after receiving this news, I began R-CHOP (a specific treatment for non-Hodgkin lymphoma).
I had six rounds of R-CHOP; one every three weeks. I wasn’t hospitalised this time around after each round of chemotherapy. My new lymphoma consultant explained I would need a stem cell transplant and that they would start looking for a new donor. Three months later everything was green for go. I had a 100% match donor and a bed was made available to go through radiation and transplant.
My wife Helen and I were at the hospital waiting to go to a private room when my consultant and another two asked us to come into the office. We were told they had a four-hour meeting with other experts that my non-Hodgkin’s lymphoma was not as genetically linked to my CLL as previously thought. They said it was my choice if I still wanted to go through with the transplant, but it would make no difference in stopping it from coming back. So, Helen and I talked privately and I decided against having it.
A few months later, I went for a check-up. My pet scan showed I was in full metabolic remission! Helen and I just hugged and thanked the doctors. It was completely overwhelming and it took a while to sink in.
That was five years ago and now I just have blood tests every six months and a check-up.”
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