Thursday, 15 October 2009

How it started

I've been having spells when I've been very tired for a couple of years. I put it down to my age, and my sedentary lifestyle- periods of sitting at a desk punctuated by periods of intense activity. I'd had an industrial injury back in 2003 that took a while to get over, so I can't pinpoint exactly when it started.

The Leukemia Research website tells me that "Chronic lymphocytic leukaemia (CLL) is a form of leukaemia in which there is an excess number of mature, but poorly functioning lymphocytes in the circulating blood. In CLL the major reason for the build-up of tumour cells is the failure of lymphocytes to die at the end of their normal life span. The rate of production of lymphocytes is not significantly increased and may even be lower than normal.
Lymphocytes are white blood cells that are vital parts of the body's immune system. Lymphocytes can be classified into sub-groups according to their function - the main groups are B cells and T cells. This is called immunophenotyping. All cases of CLL and most lymphomas (tumours of glands) affect the B cells. T cell leukaemias are extremely rare.
Chronic lymphocytic leukaemia is overwhelmingly a disease of later life, it makes up 40% of all leukaemia in patients over 65 years old. The overall incidence is about 3/100,000 per year with a median age of onset of 65 to 70 years"
..... Which is a bit of a bugger, 'cos I don't get my bus pass until Christmas. (in the UK you get free bus travel when you're 60).

I first noticed that the glands in my neck had swollen up when I was playing bass on the Patsy Cline Theatre tour earlier this year. I didn't have any other symptoms, but did report it to my GP. During July 2009 I played bass on Nicky Gillis' UK tour, and I realised that I hadn't had any time off with Sue all summer, so we went away to Wales for a long weekend. It was great, the weather was good and we had a trip on the Welsh Highland railway- over 20 miles of steam through Snowdonia- awesome.
On the way back I stopped to pick some bilberries that grow in with the heather on the mountainsides. The next day I noticed something on my leg and guessed (correctly) that I'd picked up a tick. Two days later my GP confirmed that it was a tick and removed it. He then gave me some strong antibiotics (which laid me low with a headcold). After two weeks he sent me for a blood test to check if I'd contracted Lyme's disease. When the results came back he sent me to the haematology clinic at the hospital for more tests including a CT scan and a bone marrow test.
The results came back and I was told by the specialist that I had CLL.
My treatment is due to begin next monday 18th October 2009.
I hope that this will be a regular log to describe the highs and lows, and a means whereby friends can keep up to date with my progress.

I'll close this first post with some more from the Leukaemia Research website

"Chronic lymphocytic leukaemia is a form of cancer which affects blood producing cells in the bone marrow. The disease is unknown in childhood, very uncommon in young people and becomes progressively more common with increasing age. Men are more likely to be affected than women. The majority of patients with CLL have a slowly progressing form with a survival of ten years or more. Chronic lymphocytic leukaemia is not considered curable with the possible exception of younger patients who receive stem cell transplants. A minority of patients have a more rapidly progressing form of the disease with a much shorter median survival. Standard practice is not to treat patients who have early-stage disease or have no clinical symptoms. There is no evidence that early treatment prolongs survival for these patients. Treatment is started either when patients become symptomatic or when laboratory results indicate that the disease is progressing.

The mainstay of treatment is chemotherapy. In most cases this involves low doses of drugs taken by mouth. The drugs most commonly used are chlorambucil, prednisolone and fludarabine. Radiotherapy has a very limited role in treatment of chronic lymphocytic leukaemia. Most people with CLL would not be considered for a stem cell transplant because of their age and the indolent nature of their disease. For younger patients with rapidly progressing disease a transplant may be curative. There is not yet sufficient evidence to be sure that transplanted patients have achieved cures.

Most patients are able to enjoy a good quality of life for many years, with little or no treatment. For the minority of patients with more rapidly progressing or late-stage disease more intensive therapy may be required. In between 10% to 15% of patients the disease will transform into either prolymphocytic leukaemia or into a high-grade non-Hodgkin's lymphoma (Richter's syndrome)."

So that's the news. I don't feel ill. I do get tired if I do too much. I may have lost about half a stone (7lbs). I'm still the same grumpy old git. I've got a lot of things I need to accomplish. This blog is the first. More later.


  1. Watching your journey and holding you close in our hearts and prayers dear Dave.
    Love and hugs from us both,
    Pat and Colin XX

  2. Dave, Just make sure you stay a grumpy old wouldn't be the same if you changed (only joking). Thinking of both you & Sue. Take care.Love from both of us. Tricia & Neil xxx

  3. Dave and Sue

    'we aint quitting'


    Andy and Denise xx