Jeff’s Story – Stage 4 NHL

I was a fit and healthy 51 year old, a husband and father of five. Holding a Ph.D in engineering, I carried out a challenging and demanding role as environmental manager for one of the world’s largest resource companies. However, all this changed suddenly in July 1999, when diagnosed with non-Hodgkin lymphoma.

I was naturally devastated by the news.  As I had had no symptoms, which is often typical of lymphoma, the disease was widespread when eventually diagnosed at Stage IV level. I immediately underwent six courses of chemotherapy, only to relapse several months later.  I was then given four courses of the new monoclonal antibody drug, MabThera.

The cancer has been traumatic for me and my family.  I had to retire from work due to the effects of the disease and the treatment, and being at home whilst feeling unwell put a strain on family life and relationships.  Finances became tight when my sick leave was used up and I have had to rely on a modest pension from my superannuation fund.

When first diagnosed, I was appalled at the low profile of the disease and found there was little support for people with lymphoma. “You feel like you are fighting a rare disease all on your own, when in fact it is the sixth most common cancer in Australia!.  I found there was no-one he could talk to and no Australian resources that provided technical information on the condition.  I became a member of the LSRA in 2003, to help raise awareness of lymphoma and help others with the disease.  I have also been a consumer representative on a number of committees including the Australian Cancer Network which developed the Clinical Practice Guidelines for the Diagnosis and Management of Lymphoma, and was recently appointed the Consumer Representative for the Australasian Leukaemia Lymphoma Group (ALLG).  I make it my business to keep up to date with technical developments in the treatment of lymphoma, and consider myself an informed patient.

My disease relapsed in 2004 and I again had monoclonal antibody therapy, which was not effective this time, so I had further chemotherapy in 2005.  2006 saw yet another relapse, and this time I opted for a personalized idiotype vaccine developed by the Centre for Immune and Targeted Therapy at Greenslopes Private Hospital in Brisbane.  Now almost 2 years later I am disease free and continuing to do well.  Despite these minor setbacks, life continues much as normal and I continue to manage my property investments, play the share market, and undertake consultancy work on greenhouse gas emissions.  I remain otherwise fit and healthy, even continuing cross country running during treatment.  My belief is to remain positive and refuse to let the cancer control you.