Submissions to "Patients' Stories" cannot be verified for their accuracy.  They do not necessarily represent validated medical research.  The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation.

I was first diagnosed with HCL in 1979 and had a splenectomy,following that I had bowel adhesions and was back in hospital for treatment.I was then put on Interferon which I injected myself daily for about 4 years the medication worked and I went into remission.After 2 years I had severe infiltration of the marrow and went back on Interferon,but a reduced dose this marginally improved my condition.

In 1994 I was given cladrabine in rather primitive conditions in my doctors surgery,along the way I had a series of Bone marrow biopsies the methods used were frankly Medieval and extremely painful.

things went well with a marrow that was free from HCL and blood counts that were normal however in 2002 I was travelling in India and China on business and became extremely ill I thought I had caught a bug however It turned out a tumour had formed blocking my stomach access and food was just fermenting resulting in vomiting and severe reflux.

I was then operated on to bypass the obstruction the op was successful and a credit to my surgeons skill,I then had another course of cladrabine which improved my condition.Things went well until

In march this year (I was having CT,s and Pet,s to monitor)a tumour was evident and growing between my right kidney and adjacent to my liver,I then had a course of Mabthera which had no affect,so then they tried CHOP,I lost my hair and hated every minute of It,It did nothing,so I then in June had Radiotherapy

and am awaiting the result I will have a CT next week.
So summarising my history with HCL I have had 2 major Ops,5 different sorts of Chemo,17 applications of Radiation,12 CT,s 2 Pet,s apart from the trauma of treatment and the waiting, I am in good health (I am 61)still working until 19th November when I will retire, and confident with my oncologists and my wifes and Gods help I can beat this thing.Doctors look at me sideways when I tell them I have had HCL for 25 years so I beleive I am doing Ok.

I would be interested to hear from other suffers of HCL and share their experiences and treatments.My email is areed4@ford.com I am in Australia and will be at this email until Nov. 19th, and then my mailing address is 16, North Mountain Rd, Heathcote Junction, Victoria, Australia..3758

Tony Reed