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my mother was diagnosed with Hairy Cell Leukaemia back in December '91 and she suffered similar symptoms to your sister - a long running virus that had her washed out and lethargic, and which was initially interpreted as flu. She also bled profusely from small wounds (things such as a tiny cut might take ages to heal, and that kind of thing)

By chance she was diagnosed thanks to a routine blood test. She was put on a course of interferon injections - initially every day, then three times a week, then once a week, then she was taken off the treatment all together and has only just gone back on the drug, taking it at the moment every Mon, Wed and Friday. Although of course she has some side effects from this medication - generally tiredness - she has not suffered hair loss or severe symptoms such as vomiting or the like, and has continued to live a practically normal life (she is now 54, 55 in the summer.)

The treatment my mother takes is not curative, and she has tumours of the spleen as a result of the hairy cell leukaemia which leaves it enlarged. However the interferon vastly increased her platelet count and has succeeded in putting her into remission for a three year period (she has returned to treatment as a preventative rather than a desperate necessity).

It might also be completely coincidental, but my mother has also changed aspects of her diet which seem to have improved things somewhat. She has cut a lot of dairy from her diet (taking soya milk in tea and coffee instead) and regularly eating whole grain products.

The trouble with Hairy Cell is that it is so uncommon. The doctor who treats my mother has only one other case on his books and many doctors do not seem to be aware of all the options there are regarding the disease. Of course I don't know your sister's case and her own personal problems first hand but if she is having trouble managing the chemotherapy they are prescribing her, perhaps you could enquire about interferon and whether or not it might be applicable in her case?
It also seems possible, since HCL is a generally slow acting disease that some of her other symptomatic diseases such as CFS might have been related to or linked with her HCL. My mother suffered on and off for many years with glandular fever and other conditions which appear to have been contributory to her HCL.

However, my mother has been diagnosed with this for 12 years and as I write this is still very much full of life and fight, so I wish your sister all the best and similar good fortune :D

Rose





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