Beverley’s Story – Remission after R-CHOP and a stem cell transplant

My job as a professor in the tourism field has provided lots of travel opportunities. In April 2004 I boarded a plane bound for Korea.

However, as we travelled, I started to suffer serious discomfort in the left abdomen region, which became increasingly more painful (I had experienced a similar event some 6 months earlier but dismissed it as a virus). Over the next few days I made several trips to the local hospital and undertook x-rays and various medications – being in a foreign country with no language in common made the whole event really scary.

On return to Australia, I visited a local GP. My blood tests came back normal so I was quite relieved. But then I got a call from my GP to say that an ultrasound I had a few days earlier had identified "a mass", which might be a tumour. I remember feeling totally numb and disbelieving – perhaps like many people I thought it might be a mistake. A CT scan then revealed lymphoma – cancer. As a fit middle-aged person, this came as a complete surprise. I knew very little about lymphoma and found myself, together with my husband (Graham), embarking on a medical "merry-go-round". It seems I may have had the illness for many years before it advanced and started pressing on vital organs.

I started CHOP chemotherapy treatment, followed by another drug Mabthera. While the treatment period was not something I enjoyed, it has become something of a distant memory (the more distant the better!!). I have also had a stem cell harvest and these have been saved for potential later use.

Challenged by my illness, and wanting to inspire research into lymphoma, I spoke to my artist father (Howard Sparks) about holding a fund raising art exhibition. In December 2004 we held an art exhibition to raise funds for the lymphoma research program and raised $13,000. This fund-raising program supports a project under the leadership of Professor Lyn Griffith, Director of Griffith's Genomics Research Centre.

In 2005 I set myself the goal of getting my life on track for a healthy future. I attended a health retreat which provided me with a way of feeling positive, and partially in control of my destiny. It was also great fun, even if a bit tough! The retreat provided a significant turning point for me in terms of moving from the 'sick' person to a 'well' person. It also helped me at a time that my conventional treatment finished and I was 'on my own' to cope with an uncertain future. I have since taken up Yoga, have travelled and am now able to reflect and to regain confidence in my own physical and mental abilities.

Like many people who face life-threatening illness, I have appreciated the value of friends, family and a supportive work environment. Life will never be as it was before diagnosis but it is the life I have to deal with and I aim to do the best I can at remaining healthy and happy. When the future looks tough, I try my best to 'live in the moment', although I am not always successful at this!

Right now, I feel positive; I am working and am focusing on living a happy and healthy life. That doesn't mean I don't think about my illness, I do. I'm still on regular blood tests and an annual body scan but so far so good. My goal is to maintain a state of remission for as many years as possible!

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Please note: Lymphoma Australia staff are only able to reply to emails sent in English language.

For people living in Australia, we can offer a phone translation service. Have your nurse or English speaking relative call us to arrange this.

Useful Definitions

  • Refractory: This means the lymphoma does not get better with treatment. The treatment didn’t work as hoped.
  • Relapsed: This means the lymphoma came back after being gone for a while after treatment.
  • 2nd line treatment: This is the second treatment you get if the first one didn’t work (refractory) or if the lymphoma comes back (relapse).
  • 3rd line treatment: This is the third treatment you get if the second one didn’t work or the lymphoma comes back again.
  • Approved: Available in Australia and listed by the Therapeutics Goods Administration (TGA).
  • Funded: Costs are covered for Australian citizens. This means if you have a Medicare card, you shouldn’t have to pay for the treatment.[WO7]

You need healthy T-cells to make CAR T-cells. For this reason, CAR T-cell therapy cannot be used if you have a T-cell lymphoma – yet.

For more information on CAR T-cells and T-cell lymphoma click here. 

Special Note: Although your T-cells are removed from your blood for CAR T-cell therapy, most of our T-cells live outside of our blood – in our lymph nodes, thymus, spleen and other organs.