I am 25 and have recently been diagnosed with Hairy Cell Leukaemia. I have had 5 injections of Cladribine and some Rituximab (but only a little as my body reacts extremely badly to it and had very scary experiences). On monday I start Rituximab again (8 sessions, but will take a long time as my body can only tolerate it very slowly), and just wondered if anyone was in a similar position? I know hairy cell at 25 and female is pretty rare, and I’m worried what this means long term/ treatment wise. Whilst I know people can live normal live spans with Hairy Cell, can I being diagnosed so young? How many times can it be treated? Will this “get me” eventually? My head is a mess atm, but I’m sure everyone’s is at diagnosis.
Hi @Kayleigh5297 a great big welcome to our forum.
It must be very scary being diagnosed so young; I know I was diagnosed with another blood cancer 18 yrs ago and I immediately came home and wrote a list of my funeral music.
Somehow I had my life mapped out with the usual events and milestones and after my appointment so many potential losses came flooding into my mind.
I am not surprised that your head is a mess at the moment, it is so natural, you have had a complete shock, be very kind to yourself.
You now have the opportunity to write down all your fears, thoughts and questions for your medical team, it could be your CNS (Clinical Nurse Specialist) consultant or GP.
I have found it is best to try and keep it in the day, not easy with a head like mine going round and round.
Also, research is coming on in leaps and bounds so I feel it is the best time to have blood cancer, partly thanks to the brilliant, dedicated researchers and partly thanks to Blood Cancer UK funding.
If you would like to talk to someone the Blood Cancer UK support line is there for you and I will copy this to the Blood Cancer UK nurse advisors in case, they can add anything @BloodCancerUK_Nurses.
Have you got any support?
Really look after yourself and I really look forward to hearing more about you so please keep posting.
Welcome to the Forum, I’m glad you posted.
Just to let you know I have sent you a Direct message, and it’s rather lengthy - sorry!
Hope all goes well tomorrow with your Rituximab treatment, I’m sure it will. You’ll be well looked after and given lots of pre-meds to stop reactions. Just make sure to take something to read or listen to, they’ll be a long days for you!
Take care, Heidi.
Hi @Kayleigh5297 I have been thinking about you and I just wondered how you are doing now although it takes a long time to get your head round things, so take your time and be ever so kind to yourself.
Welcome to the forum. It’s really brave for you to share your current health status with us.
I too have Hairy Cell Leukaemia and was diagnosed nearly seven years ago when I was 31. I can totally relate to how you are feeling. It comes as such a shock at such a young age and it’s absolutely natural to feel uncertainty and worry.
So far I’ve had a really good reaction to Cladribine which I also had via subcutaneous injections and am monitored with blood testing every six months.
Hopefully the information that Heidi has sent you has been a big help and I really do hope your treatment is going well.
Please stay positive and be kind to yourself. I believe in you and am thinking positively for you.
Please keep us up to date as to how you are feeling and how things are going for you.