My mum has Hairy Cell Leukaemia

Hi! I'm Charlotte, 22 years old from Harrogate, North Yorkshire. My mum has recently been diagnosed with Hairy Cell Leukaeumia. She has known for a while but waited to tell me as she knows that I am crazy paranoid about any kind of illness, especially if it involves her. She has had MS since she was 28 years old so I've grown up with that and although I am totally used to it of course I worry about her a lot (what daughter wouldn't?) 
I didn't react very well to her diagnosis but I am fairly confident that it isn't serious. She will receive Cladribine (chemo) in the form of an injection over a short period of 5 days and the treatment is more precautionary than necessary as her neutrophils and platelets are lowish but not worryingly low. Her spleen is fine etc. and she is well in herself. Her brother, my uncle, had exactly the same cancer and is fine 15 years on. It is very unusual that they both have it (I say "have" as it is a chronic illness) and it is comforting to know that you can live a happy and healthy life even with a leukaemia. I know plenty about chronic illnesses as MS is also chronic and infact, Cladribine is also used to improve MS symptoms! 
I am writing to ask for any further info on Hairy Cell Leukaemia, ideally comforting info as I overthink and don't want too much negativity haha, and it would be great to hear from anyone living with it and how it has impacted their day to day. Another thing is my mum has told me this 2 weeks before I go to Sydney, Australia for a few months (till Christmas) and of course she wants me to go and enjoy myself. My flight is still booked and I have a job lined up but of course I love my mum and want to be here for her. I will be back in December and will wait on her hand and foot but if she receives treatment earlier than then I won't be here while she's going through chemo. She has plenty of family and friends around but I am the only one at home with her. I'd like to hear from any mums about their opinions on this. Currently my plan is to go with money saved so I can grab a plane back at any time if necessary, but I feel like a bad person. My family think it would be silly for me not to go as this is not a serious illness and the doctors are all positive and my mum doesn't want this to impact my future and experiences. 
Anyway, thanks for reading. I'm very up and down with my emotions right now and thought this would be a good way to reach out. 

Charlotte xx 

  • Welcome to the forum Charlotte although I'm sorry to hear you're mum's been diagnosed with hairy cell leukaemia.

    I know you're looking for information about this type of cancer so I have included some information we have about it on our website here for you to have a look at. If you have any questions about this do feel free to give our cancer nurses a call. They're available Monday - Friday between 9a.m - 5p.m on 0808 800 4040 which is free to call if you use a UK landline.

    Hopefully other members who have this type of cancer will be along soon to share their advice and experiences with you but in the meantime do have a go at using the 'search forum' option above to find and join in on previous discussions about this that may already be on the forum.

    I hope your mum's chemo goes well and that you're able to come to a decision about heading out to Australia.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hi Charlotte I have hairy cell leukaemia and had treatment in 2017 cladribine and rituximab i am fine at the moment but still suffer from tiredness. I also had bowel cancer in 2012 i had an operation and chemo for 8 months and was told i was clear in 2017. It was during my checks for bowel cancer that i was referred to the blood clinic where they discovered i had hairy cell leukaemia. I have asked how i got hairy cell leukaemia and the consultant said he did not know. Did your mothers consultant explain to her how she got hairy cell leukaemia?