I'm a married man aged 64, living near Plymouth in the southwest of England. My diagnosis with HCL was two years ago and happened really by chance. I had no noticeable symptoms, in fact I seemed one of the healthiest people among our circle of friends. When I went to my doctor it was because my erections had become weaker, not unusual at my age. Instead of prescribing Viagra (as I'd rather hoped!) he ordered a blood test, which showed a sub-normal white blood count, then an urgent appointment with the haematologists at our local hospital. Incidentally I do have private medical insurance, having retired from the Shell oil company, but my doctor advised taking the NHS (public medicine) route to get the best treatment for blood disorders.

The haematologist at the hospital discussed the possible causes with me and ordered a bone marrow biopsy. Done under local anaesthetic, that was not particularly uncomfortable; just pressure and some moments of a 'funny bone' sensation. Since it was taken from my backside I wasn't really aware of the details, though there must have been some blood - a student observing had to sit down before she fainted! After the biopsy suggested HCL, I was given an ultrasound scan to measure the size of my spleen, which proved to be right at the top of the normal range. The advice then, as on this website, was just to wait and see how things developed. For the next year, still feeling perfectly well, I went regularly to the hospital for blood tests. My blood counts varied from time to time, but with no particular decline.

The turning point occurred last year while my wife and I were on vacation, camping in central France. Over a period of two days I felt increasingly weak. The local doctor I consulted could find no obvious cause, but suggested I go to the nearby hospital for a chest x-ray. That showed pneumonia, even though I'd had no cough, so I was immediately admitted. Fortunately we had with us the printout of my latest blood test, so the nature of my underlying HCL could be made clear. For the first time in my life I was in a hospital bed (I was even born at home!) and experiencing the public health service of France, generally considered one of the best in the world.

There I stayed for the next three weeks, still with no overt symptoms except weakness and occasional chest pains. Nevertheless the x-rays and a rising fever each night showed some infection, still not fully diagnosed. In fact my main suffering was just boredom, alleviated each afternoon by my wife who faithfully brought in English tea and the Scrabble set! The treatment was to try a whole succession of different antibiotics intravenously, none having any evident effect good or bad. Incidentally, I suspected here a difference in practice between countries: in UK it's normal to finish a course of antibiotic once it's started to prevent the evolution of drug-resistant strains, whereas my experience in France was that each was stopped as soon as it proved not to be working. An inspection of my lungs with a endoscope inserted through my nose still gave no special clue. The 'washings' from my lungs were also cultured but failed to grow any bacteria. After three weeks, when my count of antibiotics had reached nine and I had also been given a chest CAT (computer tomography) scan, it was suspected I was suffering from a inflammation of the lungs called BOOP. Confirmation would require transfer to another hospital for a biopsy, taken by an unpleasant-sounding incision through my chest wall.

As you can imagine, my wife and I were very impatient to get back to our own country. After some discussion, I signed a form absolving the hospital of responsibility, we paid the surprisingly small bill (later reimbursed by the UK government), and my wife drove me back to the ferry for England. Having phoned ahead, I saw my own doctor the following morning and was immediately admitted at our local hospital, where I stayed the next two weeks. Treated with a tenth antibiotic and an (expensive) anti-fungal, my fever was cured within a week. However, a fresh inspection of my lungs, this time with an endoscope able to recover a small sample of lung tissue, did confirm the French doctors' tentative diagnosis of BOOP. Out of hospital, but monitored with regular x-rays, this was cleared up by a course of steroid tablets. The dose was tapered off in stages over a period of weeks.

Following this rather alarming infection, I opted for chemotherapy treatment for the HCL as soon as the dose of steroids (which also depresses immunity) was at a low level. First there was a second bone marrow biopsy to confirm the diagnosis of HCL, then treatment with Cladribine (0.14mg/kg). For this I went to the hospital on five consecutive afternoons, suitably equipped with a book and MP3 player to occupy me. The drug was slowly injected for two hours, just under the skin of my abdomen. I was able to drive myself to and from the hospital and felt absolutely no ill effects, during or after this treatment. In fact, feeling perfectly well, it was rather embarrassing to have the sympathy of kind friends who assumed that 'chemotherapy' must mean I was suffering seriously; and especially humbling to see non-HCL patients coming for their chemotherapy who obviously were suffering. The only side-effect that I did have, an ugly skin rash, proved to be caused by the antibiotic (Co-trimoxazole) that I was given to ward-off infection while my blood recovered. The rash cleared up quickly when I stopped taking those tablets. Instead I've been given Pentamadine, breathed in as a mist once a month. As I write, the last of those sessions is this week, six months after the chemotherapy. My blood counts are all back in the normal range, so I guess I'm as near 'cured' as we ever can be with HCL. Certainly I feel fighting-fit. Best of all, if you'll forgive a typically male preoccupation, that original problem has gone away!

Finally, let me mention something that may be relevant for others with HCL. My daughter works in medical publishing, which gives her wide access to the literature. At each stage of this story she was picking out relevant research papers and telling me what she'd found. One paper of 2009 seemed especially relevant, reporting the excellent survival rates for 233 HCL patients treated with either Pentostatin or Cladribine, followed up over a median period of 16 years. The paper emphasised very strongly the importance of a subsequent bone marrow biopsy some months after the chemotherapy, in case it needed to be repeated for full effect. Evidently that was not (or was not yet) the normal practice at the hospital where I was treated. When I showed doctors the paper and requested it, another biopsy (my third) was willingly done and it did confirm a complete effect. How wonderful that I can now expect a normal lifespan, yet as recently as the 1970s I could have expected only four years.

(If you are interested and have access, the reference for that paper is: M.Else et al, British Journal of Haematology, 145, 733-740, March 2009).