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30 year old with CLL

Zobo
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Hi, im 30 years old and i was diagnosed with CLL a year ago. I have been on treatment of ibrutinib and Venetoclax since Feb 2025. My neutrophil count has been up and down more on the low side. Diagnosed neutropenia. Was taken of Venetoclax two times while my neutrophil count came up then back on Venetoclax but counts went down again so I’m now on GCSF injections but my neutrophil count has now dropped to 0.5! I’m experiencing excruciating bone pain and muscle aches almost like my whole body is in cramp. And terrible headaches/migraines. I’m already taking tramadol for my bone pains and aches but it just isn’t doing anything for me. Spoken with GP and nurse specialists (as my next appointment with consultant isn’t until after the new year) but no one seems to know how to help. Keep being told this form of cancer is rare for someone so young and that people 60/70+ don’t experience these kind of symptoms. I’m getting sick of being compared to older adults with this form of cancer. Feel they don’t know how to help me with having this form so young and now I just don’t know what to do. I can’t live like this I have a 9 year old son and I just can’t function I never have the energy I’m just so tired all the time. 

  • Hi Zobo

    Thank you for getting in touch with us and welcome to our online community. I hope you find it helpful and supportive.

    My name is Paula, and I am one of the Cancer Information Nurse Specialists  here on the Macmillan Support Line.

    I am so sorry to hear you have been going through such a difficult time following your diagnosis of Chronic Lymphocytic Leukaemia (CLL) with neutropenia and pain and coping with the recent treatments.

    I hope you have some support in place to help you navigate this. You may find CLL Support and Shine cancer support useful resources. They ensure younger adults with cancer have access to knowledge and support and connect a community of younger adults with cancer supporting their physical and mental wellbeing.

    Chronic Lymphocytic Leukaemia (CLL) is rare in individuals aged 30, however when it does, it often carries different long-term implications with varying side effects.  

    Coping with fatigue and weakness is often caused by anaemia as the cancer crowds out the healthy red blood cells which carry oxygen around the body.

    Bone pain happens because there are too many leukaemia cells in the bone marrow, this causes pressure on nerves and causes pain.

    If you are still experiencing headaches, migraines and bone pain, please contact your CNS or haematology team or consultant via the helpline number if you have one. If not, you can call the consultants secretary today to inform them and ask for a clinical assessment of your pain.  Always tell your haematologist about bone pain, as it needs proper evaluation to distinguish what the cause is and this then helps to find the right treatment to help you manage this. It can take time and a few trials and errors but its important to keep them informed of any new worse or change in a symptom.

    I have also attached a link to Fruitfly collective which can help you navigate family life whilst parenting with cancer.

    It may be helpful to call us on the Macmillan support line. It can help to talk things through whilst also giving you a chance to ask any questions you may have. The Support line is open 7 days a week from 8am till 8pm.

    I hope this helps.

    Take Care and Best Wishes

    Paula L

    Macmillan Cancer Information Nurse Specialist

    You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am till 8pm) or send us an email

    Ref: PL/FS

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