Mrs P - caring for husband who is having targeted cancer treatment for enlarged spleen. Concerned about some of the side effects he's having

Hello to you all.

this is my first post on here . I’m the wife and carer for my husband . We are 76 yrs of age an until recently . These last few weeks Allen has been out on targeted cancer treatment for enlarged spleen due to white cell count over crowding in spleen . He has a 18 cm increase to spleen size in 3 months. He has been on Zanubrutinib for a month now and white cells still climbing. Main probs atm are waking up with really bad head aches. I mean like thunderclap head aches. Feeling sick and head bombed. We think this maybe a side effect to TCD. The spleen isn’t painful unless pressed. Husband has had non symptomatic CLL 3 yrs . Watch and wait treatment until this last month. What can we expect now as to treatment for spleen? Radiology or Slpeenectomy  or something else? Thank you for reading my post and just wondered if anyone reading this knows of this problem from themselves or a professional on line to advise. 

  • Hello Wrac, and thank you for your post,

    I’m really sorry to hear what your husband is going through. It sounds as though the headaches are having a significant impact on him. It would be worthwhile letting his haematology team know how severe they are. If he has a specialist nurse, they may be the best person to contact first so they can assess what’s happening and advise whether anything can be done to help manage these symptoms.

    It’s difficult to say for certain what is causing the headaches. They could be a side effect of the Zanubrutinib, or they might be related to the changes the treatment is causing in the leukaemia itself.

    What happens next will depend on how your husband responds to treatment. In rare cases, some people may need surgery to remove the spleen, but this is not a common approach. His specialist team will be able to advise on this as they know his situation.

    Hopefully, other people will respond with their experiences to this post. The CLL Support Association is a UK patient‑led charity that also offers support and runs an online community specifically for people with CLL.

    Please feel free to get back to us. If you’d like to talk things through with one of our nurses, please do give us a call. We’re available Monday to Friday, 9am to 5pm, on our freephone number 0808 800 4040.

    Best wishes,

    Jemma