hello ive been on 160mg of zanutrubanib 2 x per day for 18 months working really well but my lymphodenopathy has returned and im wondering if anyone on the forum has had similar symptoms /issues ?
chrism
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Hi @chrism
I’m sorry to read about the return of Chronic lymphocytic leukaemia ('CLL') symptoms.
Hopefully getting good support from your clinical team.
My diagnosis is a different blood cancer and hopefully some others might be able to share experiences.
Take care
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Hello there @chrism, welcome back to the forum. Glad to read your treatment has been working so well, but that’s got to be a bit gutting having the lymphadenopathy return. May I ask what your specialists have said about your lymphs changing? I’d suggest you speak with them, and certainly if the lymph nodes ache—I had inflamed lymph nodes a few years ago and they were most unpleasant. I treated mine with warm flannel compresses laid over the affected area after speaking with my doctor.
Like dear @DuncanB says, I’m sure others around the forum have experienced similar to you with a diagnosis of Chronic lymphocytic leukaemia ('CLL'). One way to look is to use the search box at the top using relevant terms.
Hope you don’t mind but I had a quick look to see if there are any threads with comments relating to Chronic lymphocytic leukaemia ('CLL') and/or lymphodenopathy and here’s one that may be of interest: CLL - starting treatment
I know of some lovely forum members who also live with Chronic lymphocytic leukaemia ('CLL') and have shared support with you previously, might you have a word or two of wisdom dear @Erica, @GenesisDevice and @DottieB? No pressure at all. I see that Mike shared this only today: CLL and tracking blood results
Have you found anything that helps with your lymph nodes @chrism? I tend to be recommended paracetamol for any aches as I already take daily aspirin, but that warm compress really helped my lymph nodes when they were inflamed.
Do let us know how it goes and what you find that is helpful @chrism.
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Hi @chrism I am really glad to see that you have posted again when you have concerns.
I am a great one for immediately informing my medical team of any changes or concerns that I have. I would rather know than my imagination whilst not knowing.
Please do let us know how you get on, your forum family are always here. So are the Blood Cancer nurses on 0808 2080 888.
Really look after yourself and please do keep posting.
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Hello @chrism
Thank you for taking time to send your post into the forum
I am also a Chronic lymphocytic leukaemia ('CLL') patient - but i was only diagnosed in April 2025, so i guess i am only at the beginning of the journey so to speak
I have not had any treatment to date, remaining on active monitoring via regular blood tests.
If you prefer, please remember you can call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
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Sending you kind thoughts as you navigate your way through the challenges the condition ca bring
Do let us know how you get on
Best regards
Mike
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Hi @chrism, good to see you posting, though I’m sorry to hear the lymphadenopathy has returned. How are you feeling?
To echo what has been said, it’s really important to let your haematology team know about this if you haven’t already - returning lymph node swelling while on treatment is something they’ll want to know about and investigate.
It’s great to see @Erica and @GenesisDevice here - both have real Chronic lymphocytic leukaemia ('CLL') experience. And I can see that @Duncan has linked some useful threads. You might also find our chronic lymphocytic leukaemia pages helpful while you’re waiting to hear from your team.
Do keep us posted on how you get on.
Best wishes,
Ceri - Blood Cancer UK Support Services
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Hi @chrism
I am very late to post so apologies for that, I see you have had great responses from everyone.
I have Chronic lymphocytic leukaemia ('CLL') too and am currently going through treatment, which I started following a fast increase in my lymphodenopathy
It responded quickly to the treatment but has slowed significantly this last month
Unfortunately I have no wise advice but hope you are doing okay
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Hello there @chrism, just popping in to say your personal details are shown publicly here in the forum so you might want to delete your comment and send those details via a direct message instead?
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