CLL hasn't stopped Piers being "as busy as ever"
Being diagnosed with CLL in 2003 came completely out of left field for Piers Hartley, and proved to be a double whammy for the retired school principal.
When Piers had a blood test because he had diabetes in his family, CLL was picked up along with Type 2 diabetes. Although Piers, 69, of Mt Beauty, in Victoria’s northeast, said he had no CLL symptoms, he believes he may have had the condition for a while. When he went to see a general physician after his diagnosis, Piers was told his diabetes was much worse than his CLL. “My GP said - ‘I won’t see you again for your CLL for 20 years. If you’re going to get cancer, this is the best one to get’, so I came home and felt very pleased about that,” he explained.
“However, his comment was wrong, and this is a common misconception by some medical practitioners. CLL varies a lot from one person to another and some cases need prompt medical treatment. Much better diagnostic tests are available today and anyone now diagnosed with CLL should seek the advice of a haematologist, preferably one with specialist CLL expertise,” said Piers.
To keep an eye on the CLL after this diagnosis, Piers had a full blood count every six months with his local doctor, but gradually his lymphocyte count started to go up. Over three years, it went from 15% at diagnosis, to 60-70%, and when Piers started getting swollen lymph glands, he was referred to a haematologist in 2006.
“He was quite encouraging and said he’d watch and wait and when it got to a certain level, we’d talk and do something about it.”
Piers’ levels continued to increase over the next 18 months and when this rise became more rapid, he started a course of oral chemotherapy (chlorambucil) for several months. “It had a modest impact and reduced my lymphocyte count
initially, but didn’t hold it,” said Piers, and when his count reached 180, in April/May 2009, Piers began a course of rituximab. “Again, the treatment had some affect, but didn’t deal with it,” said Piers, and in September that year, he chose to go
to Melbourne to start a six-month course of the combination treatment, FCR*.
“It was brilliant. It just knocked the lymphocytes right out, and over three months they went from 180 to zero. It absolutely did the trick, and quickly.”
After the fifth cycle, in January 2010, Piers stopped the treatment because he was too sick and his blood counts were very low. “I felt pretty awful, had no energy, was very tired, and susceptible to infection.” Over the next four months Piers
was unwell, was hospitalized for an infection, and developed skin rashes, which required a course of prednisolone. “It fixed my immune system within a few days and I have been fine since then. In a short time my blood counts improved, I got my energy back, and I haven’t had any problems since.”
Piers said the Leukaemia Foundation had helped him in several ways, although he “didn’t get connected with the Foundation” until well into his CLL journey. ** “When I was in Melbourne, they provided financial assistance and accommodation close to the hospital. “I was involved in the Foundation’s review for the update of the CLL information booklet and I take part in the CLL telephone forums, which I think are both very good. I’ve been on the Foundation’s website a lot and to the Talk Blood Cancer website forum (www.talkbloodcancer.com) where I put in my two cents worth, if it’s relevant,” he said. “I live in a small rural town and I use the
internet a lot. It’s a wonderful source of helpful information and there are some fantastic CLL patient websites. I check in every day to see the latest posts, but you have to be careful and not take everything as gospel. When I go to the doctor, I tell him what I’ve read and we discuss it – it is a most helpful relationship.
“A subtle thing about CLL is that it’s not a physical tumour. It’s not visible and I think the long-term effect of that hanging over your head can be quite draining. This is something family, friends and medical practitioners all need to be conscious of in providing care and support for people with CLL. I feel that from time to time, but you have to get on with life and not worry about the next blood test,” said Piers, who is as busy as ever. He started learning the flute, aged 59, has played in the local community band, and co-ordinates 50 volunteers who provide disaster recovery in the region, mainly for bushfires. “Having an accurate diagnosis, an approachable specialist and knowledge about the most appropriate treatments have all helped me have a sense of control over this disease, and allowed me to truly get on with my life.”
* fludarabine (F), cyclophosphamide (C) and rituximab (R)
** Many people with CLL do not need treatment when diagnosed and often they are not referred to the Leukaemia Foundation as there is a perception that they don’t need the same support as those who are treated immediately.