Hairy Cell Leukaemia

[Sajsingers]

Hi. I was diagnosed with hairy cell leukaemia in may 2018. I was treated with cladribine.

I gained partial remission in December 2018.

After a bone marrow biopsy in March 2019 my leukaemia is growing again and I need further treatment.

I’m would like to talk to anyone who is having a similar journey

Thank you in advance

[2003UK]

Hi, unfortunately I cannot help you as I am not in the same situation as you but the Leukaemia Care Charity is there for support and advice:

Email: [e-mail]

Freephone helpline: 08088 010 444

Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm

However we are there to support each other whatever is going on, it sounds a scary time for you and we often all share the same fears, what if's, thoughts and feelings so take lots of care and keep posting.

[frankmok]

Hi Sajsingers,

Sorry to hear that your initial cladribine treatment might not have worked. I was diagnosed with HCL way back in 2003, had a course of cladribine which worked, and although my blood results have often been somewhat borderline over the last few years, the docs are still watching and waiting with me. I've certainly had a good run since my chemo, how was yours administered - drip, subcutaneous injections and for how long?

Like someone else advised, it really is worth talking to LeukaemiaCare and their helpline.

Best wishes, Frank.

[TM1972]

Hello, I've just been diagnosed with the same condition and am extremely worried. Currently I am on 'Wait & Watch' which is an extremely worrying and anxious time. Were you the same?