Hairy cell leukaemia - treatment update

[frankmok]

Quick update one week after my 5 day subcutaneous chemo jabs ended. So far so good, I've managed a few one mile or so walks with my daughter, am sleeping well, eating well but have lost nearly a stone (13 lb) weight over the last 6 weeks, and get tired if I over-exert myself. Also having a lot of night sweats, but they started in April when I went down with Sepsis and had those two spells in hospital. I'm having weekly blood tests over the next few weeks and my haematologist is happy enough with my progress. My background is I was diagnosed with the hairies back in 2003 and treated with a cladribine drip, so I've had a good 17 year run before needing more chemo though in retrospect I probably should have had chemo 3 or 4 years ago. I'm now 72.

[2003UK Champion]

Thanks for the update, I was diagnosed with CLL Dec 2003. Perhaps you are being very hard on yourself. Your body has been through so much emotionally, physically and practically and I think it will take you a long while to build back up, give yourself time and be kind to yourself and have the odd treat. Keep posting.

[frankmok in reply to 2003UK]

Hi, I think what really floored me was the sudden onset of sepsis and also hyponatraemia back in April, when the previous week I'd been feeling great. So a week in hospital, then 10 days at home, then another week in hospital.... and then the 5 day cladribine chemo a fortnight ago after a week or two back home recovering. Yes, I'm happy enough with where I am after the chemo, a little impatient for things to improve quicker, and spending a lot of time taking it easy, being well looked after by my two daughters and ex-wife who have been taking turns staying with me for a few days at a time - which I really appreciate although it impinges on their lives, especially as they all live near Nottingham 100 miles away from me.

[LineofDuty]

Hi Frank, Thank you for sharing your story.

I too have HCL, diagnosed 2006, relapsed 2013 and had the 5 day chemo jab.. feeling great, however blood counts on the decline but stable. Just enjoying the lovely weather we have at the minute.

[frankmok in reply to LineofDuty]

Thanks - good to hear that you are feeling good, despite falling blood counts. Mine were mostly low but stable for quite a few years - as I was asymptomatic, the docs left me be, though in retrospect I should have had chemo a couple of years ago.