Hi, 4 weeks ago I was diagnosed with Hairy cell leukaemia (HCL) after a number of years struggling with fatigue. I’ve had over a years worth of blood tests every few months and was told I was neutropenic. In the last year I’ve also been anaemic from my red blood cells being too large. I’ve been on iron tablets most of 2023 which have helped with the side effects of the anaemia. I have a number of symptoms, fatigue, feeling weak, breathlessness, unexplained bruises, night sweats, a persistent swollen lymph node in my neck and at the end of 2022 I also developed pulsatile tinnitus which I strongly believe is due to the anemia. I had a CT scan earlier this year and the cause wasn’t clear from the scan. My Consultant has suggested Cladrabine. I was told that any previous viral infections I’ve had could be reactivated, the example given was shingles. The thing that I’ve read about and I’m the most fearful of is neutropenic sepsis. There seems to be limited information on how often this occurs. The Consultant did say that they could give me antibiotics and antivirals, however surely unless you have an infection they don’t know what antibiotics to give you until you have an infection? I know I need to ask more questions about this and have a follow up with my Consultant on the 4th January, however I thought I’d try and put my mind at ease by reaching out on here to see what other people’s experiences of infections after Cladrabine have been.
Hi there, so sorry you have found yourself here, however, we are here to support you, there are so many different types of blood cancer, which then will inform your treatment, I was given an emergency prescription for antibiotics during treatment, and this was in case of Sepsis and this drug would help to protect me if required. Many of your concerns seem to be clinical so I would suggest you write down your questions and contact our support line where a clinician will be able to advise further, please do take care of yourself, the waiting is the worst part, hopefully in few days you will know much more information. Take Care, rest up, and remember you are not being lazy you are taking care of yourself so please REST. 0808 2080 888 support line.
Hi @anitajayne I am so glad that you have found us and had the courage to post. @McVey has already given you a great response.
Yes, I always write down all my questions otherwise I always miss something when I get into my appointment.
Also self care is not being selfish I find it is vital.
I will copy your post to the Blood Cancer Nurses in case they can add anything @BloodCancerUK_Nurses
Please do let us know how you get on
Thank you so much for posting and it is understandable you have the questions around Cladribine. We are glad you have come to the forum as it is such a supportive and welcoming space where I am sure you will gain other’s experience.
The process of managing neutropenic sepsis is reactive as there is no definitive frequency for individuals but you will be given clear escalation on how to manage this if it happens to you from your treatment team. If you are neutropenic you will be advised to take your temperature at home if you feel unwell or feverish, if you do have a temperature over 37.5 degrees you will be guided to call your treatment team who will then arrange for you to be reviewed and treated. The antibiotics they give will be broad spectrum to cover the most common infections, in the meantime, the team will have taken blood cultures or swabbed any potential infection areas (for example the throat, wound, central venous line site) and adjust antibiotics if needed when these results are reported.
We have some information on neutropenic sepsis here that may be useful but I would be reassured that your treatment team will give you definitive and local advice for you: Neutropenic sepsis | Blood Cancer UK
We are currently working on some new information about hairy cell leukaemia. If you are affected by hairy cell leukaemia, please get in touch with Abi on ahowse@bloodcancer.org.uk if you’d like to help shape the new information.
Our Support Service is also here for you - we can help you find out more information about hairy cell leukaemia, so do please call us if you need.
Kind regards
Gemma