I’ve recently been diagnosed with hairy cell leukemia, and my consultant has advised chemotherapy with Cladribine. Has anyone got comments or experience with this. Thanks
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Sorry I cannot help you @DavidJohnSmith but I will copy copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses in case they can assist and hopefully someone will be able to share their experiences.
For me I hate the unknown.
Please do keep posting how you are getting on.
Look after yourself
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Thank you very much 
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Hi @DavidJohnSmith, thank you for sharing. May we ask how you’re doing? If you’d like to talk things through at all, you’d be very welcome to reach out to our Support Team (Blood cancer information and support by phone and email | Blood Cancer UK). You may have seen this already, but our colleagues at Macmillan have useful summaries about cancer treatments ( Cladribine (Leustat® or LITAK®) | Macmillan Cancer Support).
Do you have a Clinical Nurse Specialist (CNS) allocated to you? Might you find it helpful to reach out to them for their comments too?
Please do let us know if we can support you at all.
Best wishes,
Tanya.
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Tanya
Thank you very much for your reply and concern, i went to the hospital yesterday and signed up for the chemotherapy. I was assigned a specialist nurse, and the consultant was very caring and informative ( as was the nurse). I am completely at ease with what they told me, and was happy to put myself in there capable hands.
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It sounds like you have a great medical team around you. Trust in your team is essential and makes the journey a lot easier. Please keep us updated on how you are doing 
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Hi David
I had Cladribine treatment last last September and i had no side effects though others do. The isolation after while your bloodcounts recover can be quite waring but eventually you come out the other side. My treatment did not kill all the Hairy Cell and I’m left with 20% as I am 73 so will have to wait and see what my consultant suggests as he said that some new treatments are on their way, fingers crossed. That no doubt will now be monitored but my blod counts are back up to normal for now .
Suggest you sign up to the Facebook book site Hairy Cell Leukemia as it has many members from all over the world.
Further it is worth signing up with Hairy Cell Leukemia Foundation.A free association, they have a free seminar in October in London that is being broadcast live. Luck my consultant Professor Farconi is one of the talkers. Unfortunately i can’t be there as we are on holiday but i see him before we go.
Hope this helps
Bruno
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Welcome to our forum @BrunoB and thanks so much for sharing your experiences, it sounds as if you feel in good hands.
Please let us know how you get on.
Look after yourself.
Thanks for your information, I’ll certainly do as you suggested. My consultant explained to me if my Cladribine treatment didn’t kill off all my hairy cell leukemia, i would be given Rituxan (Rituximab). To get rid of the M.R.D.(minimal residual disease). I would be very interested to learn what new treatments your consultant is suggesting, stay safe and upbeat we will conquer this.
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Hi @BrunoB and welcome to the forum,
Some great resources shared here.
I look forward to learning more about you
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Hi @DavidJohnSmith
Sorry to read about your diagnosis - I was treated with Cladribine 6 years ago now (in fact, today was anniversary of finishing chemo - and after a spell in hospital).
I blogged about my experience here
https://www.dmq-online.net/category/leukaemia/?orderby=date&order=asc
and there is a very good group on facebook where Hairy cell leukaemia (HCL) patients share stories.
Best of luck with your treatment! Take care. Be sure and shield!
David
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David Quinlan many thanks for your excellent replies to my condition, I read everything with interest ( as you can understand). I’ve just finished X 5 days of chemotherapy, with Cladribine and am having regular blood tests and another meeting in a couple of weeks with my consultant.
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Looks like i haven’t been shielding enough, currently in hospital on iv anti biotics. Temperature 
at home rang my emergency contacts,who said come in straight away. First thing covid test, which was positive. So I’m currently into my Fourth day at my caring hotel, yesterday i was being looked after by a nurse who’s doing the Great North run for blood cancer charity, i hope i can see her again today and get her just giving page details.
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Oh @DavidJohnSmith Sorry to hear you have Covid and are in hospital.
Don’t beat yourself up, it’s the luck of the draw getting Covid.
What a caring nurse you have, thank her from me for doing the Great North Run For Blood Cancer
Look after yourself and please do keep posting how you are doing
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We’re so sorry to hear you’re poorly and in hospital, @DavidJohnSmith. Take good care of yourself and do hope that you are on the mend soon. We’re all here for you.
Best wishes,
Tanya.
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So sorry to hear you are so poorly and really hoping you start to feel better soon. I’m glad you are being taken care off
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Hi, Firstly sorry to read that you’re back in hospital. I completely sympathise with you as I too recently received a diagnosis of Hairy cell leukaemia (HCL) and have been told my bone marrow is riddled with it so I started a 5 day course of Cladropine 4 days after being diagnosed. I’ve not experiencsd any side effects and was able to return home on the same day as my last injection. However, that was 12 days ago and I’m also back in hospital for the third time now as my temperature keeps spiking. My blood counts are all really low and I’m severely nuetropenic too so I would just say really listen to your body and keep a close eye on your temperature and be aware of the early signs of infection. I hope you get to go home really soon
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Hello @Dangermouse. I like your user name by the way! I wonder what made you choose it? A warm welcome to this forum. So sorry to hear what you are going through. I guess you are still trying to get your head around your diagnosis. I hope your blood counts soon pick up and you can get out of hospital. I have a different blood cancer but you will hopefully find we can all support one another on this forum and find it a safe place to say how we really feel. I send my warmest wishes, Willow x
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Hi @Dangermouse I would like to welcome you to our forum family.
Yes, it is a good philosophy to listen to your body, however I have never monitored my temperature, thanks for the handy tip.
As @Willow says we might all have a different diagnosis on here but we can still support each other on here.
My diagnosis was a complete shock to me and it took me a long while to come to terms with so be very kind to yourself and please keep posting. I look forward to hearing more about you.
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Thank you @Erica and @Willow. Yep, I’ve had very little time to try and process everything and still trying to get my head around it all.l whilst bouncing back and forth between stays at home and the hospital. I’m glad I’ve found this forum and think it will be really useful. I’ve requested to join the aforementioned Faebook page and it will be good to know I’m not alone on this journey with others who understand.
My username is simply my favourite tv show when I was a child (child of the 80’s!). 
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