You will know when you feel ready to access support x
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Hi @Pickle23 I have been thinking about you and I just wondered how you are doing now, especially with the festive season approaching?
Look after yourself
Hi @Erica. Thank you so much for thinking about me. It’s a strange feeling this year what with being newly diagnosed. Sometimes it just catches me at the strangest of times that I have actually got cancer and it stops me in my tracks. I am just trying to focus on my girls this Christmas as my eldest is off to uni next September. Sometimes on bad days I wonder how many more Christmas’ I have left but hoping that it will be lots xx
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hey…i joined this forum today having been recently diagnosed with Chronic lymphocytic leukaemia (CLL). Lymphocyte count mildly raised (5). historical episodic night sweats which are now drenching every night for past year or more. towel next to my pillow…soaking. i had bone marrow biopsy which showed 35% infiltration. but i don’t really know what that means and would be grateful for any input from anyone who has this condition and can reassure me. i’m extremely fit and sporty otherwise and excercise like crazy (as i’ve always done). whatever i have doesn’t seem to be affecting me physically…as yet. i was wondering whether anyone here has had similar problems with night sweats (i’ve had them since 2006 and it’s been suggested that it might be anxiety-related). i’ve always been an anxious/stressed animal…but are the night sweats due to anxiety? please let me know what you think. i’m coping pretty well emotionally…but there’s always this anxiety and fear underneath.
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Dear @hackneybloke
Welcome to the forum and I am sure you will find this a supportive and informative space.
It does sound like you are coping well but reaching out is generally helpful and reassuring when you are diagnosed with a blood cancer. May I ask whether you have been given plenty of information around Chronic lymphocytic leukaemia (CLL)? I will add some resources to the end of this message just in case you need it and please do call the support services team if you would like to talk: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
I’ve just been told I have blood cancer | Blood Cancer UK
Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
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thanks for getting back to me gemma. i’m a biology graduate so fortunately it’s been easy for me to access and understand information online. it seems that my Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) is just bubbling under for the moment. i was more concerned and fed up with the night sweats. but gp and haematology consultants are none the wiser. thanks for the links and phone number. a friend suggested i see a cancer specialist privately, but I’m wondering whether that will achieve anything since i’m already being monitored. i think it would be useful for me to be in touch like this with other people living with the same condition…which is why i joined up. thank science for the internet 
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that’s funny…i wrote “it seems my Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL))))…” and some algorithm has decided to expand it (presumably for education purposes)…so it came out instead as, "it seems that my Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL))). i didn’t want you to think i was spelling out to you what ‘Chronic lymphocytic leukaemia (CLL)’ stands for. stupid algorithm! 
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so i was right…stupid algorithm
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Hi @hackneybloke I am so glad that you have found us, I am a fellow Chronic lymphocytic leukaemia (CLL)’er.
I was diagnosed 19 yrs ago and yes, I had night sweats for years now my inner thermostat just has an unpredictable life of it’s own.
Since diagnosis I do not deal with what personally stressed me as well and I get anxious before and during tests, results and appointments and I am generally far more emotional.
Yes, when we type in some initials it puts the blood cancer to help others understand conditions better. don’t worry.
I manage the symptoms I was diagnosed with every day, mostly fatigue.
Pre Covid I was doing a dance class and a Pilates class nearly every day…
However during lockdown I took up walking, which I have continued, and I am back to Pilates once a week now.
At 73yrs old I am fitter now than I have ever been.
It sounds to me, I am not medically trained, that you are doing absolutely fine and you are now part of our forum family and you can be really honest with how you are thinking and feeling on here.
Look after and be kind to yourself and please keep posting
thanks erica.
i think there will be breakthrough science to end this disease soon.
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Re private treatment- my feeling is that NHS treatment means your case will be discussed with others and a consensus reached about the most effective treatment. That is not the case privately. However you must do whatever you feel is best for you.
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Hi @Emerald a great big welcome, I have not been in this situation @hackneybloke so I cannot comment.
@Emerald I look forward to hearing more about you.
Look after yourselves
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Hi i was diagnosed april 2022 after 18 months of not sleeping. Im a bit jealous that you havent been or felt ill as i have a constant chest/sinus infection which makes me feel very unwell. I am also exhaustingly tired every minute of every day from waking up to going to bed. Like yourself i am very positive and try my best everyday to have as much fun as possible.
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Hi there. Does anyone who has Chronic lymphocytic leukaemia (CLL) experienced sores on the roof of their mouth. I’ve had a patch of sores for about two weeks now. Not sure what could be causing them. They’re not like ulcers just red sores. Worried it’s something serious x
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Hi @Pickle23 have you checked your sores out with your GP or medical team, you are obviously concerned.
Please let us know how you get on.
Look after yourself
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In the first six months when I was on Venetoclax and zanubrutinib I frequenty had cold sores around my lips and ulcers in my mouth. Good news is i have had only minimal of these since.
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Hi @hackneybloke I just wondered how you are doing now?
Take care of yourself
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Hi @Pickle23 I wondered how you are doing with the sores in your mouth?
Take lots of care
hi erica - apologies for late reply. i’m managing to get on with life….but the drenching night sweats are depressing because it’s a 3am reminder of what’s wrong with me. also just noticed i’ve been getting a lot of sub-conjunctival haemorrhages. i’m wondering if it’s part of the package.
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Perhaps @hackneybloke it is worth a talk with your medical team.
Look after yourself
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