Ron

‘I was 57 and had taken early retirement from the Civil Service 2 years earlier with intentions of looking after my wife Katherine who had health problems over a number of years. We were living in Somerset, but had been planning to move to North Lincolnshire.   

In 2005 I noticed a lump in my testicle so went to see my doctor and from there everything happened very quickly. I was referred for a scan, as my doctor suspected testicular cancer. However the results from the scan and a biopsy revealed that I had diffuse large B-cell lymphoma. Strangely I wasn’t shocked by the news. I think by then I had come to the conclusion that it was cancer.

I was treated with R-CHOP chemotherapy which I tolerated pretty well. At least I thought I had, although others told me I was a bit more snappy and bad tempered, and looked very ill. I experienced side effects, with my hair dropping out. I was also really aware of how fatigued I became. This was easy to measure as where we lived was very hilly; my walk into town was down a steep hill, but I found the hill on the way back increasingly difficult and had to sit down to get my breath back.

Despite the diagnosis and treatment, we decided to carry on with the house move which eventually came together just before my final course of chemotherapy. I thought it would keep things more straightforward to have the last treatment in the same hospital as the previous treatments. Looking back, I’m not too sure how I managed that! The chemotherapy was to be followed by radiotherapy, so treatment was moved to our new location.

The house we bought had been described to us as in a quiet and peaceful spot. But when we moved in, the youth club next door was a nightmare. Within a month, I was having meetings with police and local councillors and set up a neighbourhood watch. This immediately got me involved in the community. So much so, that I became a councillor and in 2014 was elected Mayor of Crowle. I thrive on being busy and as well as all the community activities we breed, show and judge King Charles Spaniels at championship show level.

Throughout all this, my lymphoma was persistent. In 2007 it came back and on this occasion my medical team decided to harvest stem cells in case I relapsed and needed an autologous stem cell transplant, using my own stem cells. This proved to be the case in January 2009 and I found the transplant to be the hardest experience I had. It took me months to recover. In April 2010 I was diagnosed with lymphoma for the fourth time, leading to a 2-year programme of maintenance rituximab. This was followed by another 2 years cycle starting in 2014. Half way through another lump appeared which was treated with radiotherapy because it was localised. But within a month the lymphoma was back again very close to where it had been treated, so I then needed another course of chemotherapy.

Lymphoma Action got in touch with me in 2012 because they had been invited by NICE to make a submission. This was in support of a chemotherapy drug called Pixantrone which is used to treat non-Hodgkin lymphoma when a person has relapsed or has refractory disease (where treatments are no longer working). I was pleased to have the opportunity to share my experience and I understand from Lymphoma Action that this was a powerful addition to the submission.

I had occasion to use Pixantrone myself when my lymphoma relapsed again in 2015. I spoke to my doctor, who was aware of the drug, and agreed it would be suitable for me. Unfortunately the Pixantrone did not work for me, although I know that not everything will work for everyone. I then went on to have Etoposide, which has since been discontinued, followed by another course of radiotherapy.

It has felt fairly non-stop, but on each occasion a suitable treatment has been found

Ron

It has felt fairly non-stop, but on each occasion a suitable treatment has been found, so I am delighted to have been able to support the addition of another drug for people with relapsed or refractory lymphoma.’

October 2016