Just been diagnosed with CLL

Hi @gaeln that was a bit of a shock wasn’t it, you show so well how we are all unique and very individual.
Haematologists and Dr’s can still be flummoxed.
Yes, I agree sometimes you have to water down what you say to certain people.
I hope you get to Australia later this year
Please do let us know how you get on and really take care of yourself.

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Thank you, yes very individual.
I hope you get to beautiful Australia, if you want any suggestions let me know. I hope to visit family and friends again too.


Hi Erica
Sometimes I think I’m in a bit of denial and stay upbeat so people don’t worry about me but I have always been a doer and blasted my way through life with my career and lots of travel so I’m not going to change now . Everyone is different as you say and this forum is the ideal place to share our thoughts and experiences and support each other.


Just a little update from me.

So I had my full results yesterday, and it was all positive.
I have the 13q deletion (not sure what that means but it’s a better one)
My IGHV is mutated, again a good marker
And no signs of TP53 mutation.
My platelets have dropped a little but my white blood cells are stable. (Although very high)
So back in 3 months and on watch and wait.
So although overall a crap situation this felt like a little win!

I am now back on the fence about telling the kids as in my consultants words ‘you may need treatment in 6 months or 6 years or never’

Whilst I feel well and have this under control do I really need to tell my 14 year old?
Cancer/ leukaemia are such scary words and his friends mum died of breast cancer a few years ago so no matter what I said I’m sure he will think the same will happen to me.

I just don’t see the benefits of telling him yet. I don’t know I’m confused about this one and I swing back and forth each day.


That sounds good news @Lola2023.
As for your dilemma whether to tell your 14yr old.
Perhaps when you are swinging back and forth it is not the best time to make a decision.
Look after yourself and please do keep updating us.

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Really difficult decision you know your child best and how they will react At 14 they are pretty astute and may sense something is going on which potentially could create more worry of the unknown and pressure on you to behave “normally” if you are having a difficult day. There is no right or wrong only what is the best thing for your family. Take your time to think it through before you decide x

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Hey @DottieB

Been a while since I posted.

We have now decided to tell the kids over Easter they are all home for the weekend so we can sit and talk as a family, sleep on it and talk again.

I’m anxious to do it and scared of the fall out but I can’t go on keeping it a secret it’s effecting my mental health too much.

How are you?


Hi @Lola2023

Good to hear from you
It is scary but if you feel ready it will be good to tell them and the way you have planned it sounds good, it will give you all time to process it .I hope it goes as well as it can , be thinking of you
I am okay thanks , waiting for blood results which seem to be taking forever .This is apparently life now , waiting for results :laughing:
Hope you’re as okay and well in yourself as you can be
Be thinking of you,let me know how it goes take care of yourself


Hi @Lola2023 that sounds like a really well thought out plan.
I bet you are anxious, I will be thinking about you.
Please do let us know how you get on and how you are thinking and feeling after Easter.
Don’t forget none of you have a manual of how to be and you might all react differently, there is no right or wrong.
Be kind to yourselves


Hi @Lola2023 I’ve only just joined this group but wanted to reply to your post. I’m also 52 and was diagnosed with Chronic lymphocytic leukaemia (CLL) in September last year. I had been ignoring some symptoms thinking it was all to do with peri-menopause as I’m sure a lot of ladies do! It was advanced enough to go on an immediate treatment plan so am now on Ibrutinib and Venetoclax (which I started just before my birthday!)
I’m feeling so much better than I have for years! I’m even running and leading a pretty much normal life, I just listen to my body and try not to overdo it! Lots of rest when I need to.
I’ve told close friends and family, including my sons who are in their early 20’s, and I’ve told them all not to Google it, but to look at the trusted sites such as this one and other Chronic lymphocytic leukaemia (CLL) and blood cancer sites, and show them the Diagnosed with Blood Cancer booklet.
People hear the word Cancer and assume the worst so it’s important to educate people that you tell.
If you continue on ‘watch and wait’ then great, but just to reassure you that if you need treatment it’s really not awful. I am still trying to process it but am definitely moving forward, and the support from my family and close friends has really helped me with this.
All the best with telling your kids - I know it’s not easy but for me it was 100% the right decision.
Take care x


Wow, @Jaz2711 I am so glad that you joined our forum.
I was diagnosed at 53yrs old with Chronic lymphocytic leukaemia (CLL) and I have been a very lucky girl and been on watch and wait (active monitoring) for 20 yrs.
Thanks for your whole post you talk so much sense,
I found it took me a long time to process my diagnosis, be kind to yourself.
I have also found that family and friends are priceless and yes, the hardest, but best thing, was telling my son.
Look after yourself and please do keep posting


Hi Lola
Im 51 and just diagnosed with stage A Chronic lymphocytic leukaemia (CLL). I look at like this that at least its a slow progressing cancer which may never need treating. As you can see from the forums some people have had it for 18 years. I am hoping we all just never need treatment. I had MBL from 2018 but now its progressed. I am hoping these new treatment prove to be curative. Having quite a young family makes all this even more difficult to accept…

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Hi @Attyx and welcome to our forum and posting.
Yes, it is difficult to accept.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago aged 53 yrs and I have been on watch and wait (active monitoring) for all that time. I feel a very lucky girl
When I was diagnosed I thought I would never see my son married, he is now 50 yrs old and still not married !!!
Personally I would say try and keep it in the day, it is easier said than done.
Look after yourself

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Hi Erica

Thankyou so much for replying and your words of comfort. What were your lymphocyte counts when you were first diagnosed and did you take any suppliments?

I am hoping so much that a cure is found soon.


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Hi Attyx

I’m now 5 months after my diagnosis and I’m still struggling to come to terms with it. I’m now 53.
My count is 203! Super high but as I feel relatively ok (little tired) I’m on watch and wait.
I will go on treatment within a year.
I take each day as it comes I’m trying to get back into my fitness.
Telling my kids last month was a relief and now I can tell some close friends who are supporting me. I have quite a stressful job and only my HR person knows (my boss doesn’t)
I have found this forum helpful, but it will take time to feel like ‘me’ again. Be kind to yourself. Take time out when you need it. And look after yourself x


Hi @Attyx I don’t take any supplements and if I did I would talk to my medical team about it first. As for my counts I have just got a new laptop and have not got my blood tests results handy.

I can totally relate. The hardest part is when you do tell people you have cancer they think you are just being over dramatic as you have no symptoms and not on chemo therapy. I am still coming to terms with the whole thing.When you say your count was 203 are you talking about the lymphocyte count? What treatment is being proposed?

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My white bloods are 203 and my lymphocytes are 140.
I will go on ibrunitib and Venetoclax unless something else better comes out over the next year. I have to have confidence in my consultant and believe him when he says I will respond well and kick it in to long term remission.
Telling people is hard and I have started to call it a blood disorder so not to dramatise it. I give them the Chronic lymphocytic leukaemia (CLL) booklet if they want to know more about and understand.
It takes time to get over the initial diognosis, so give yourself time, don’t read anything on the internet other then this website as I found anything else you only here the worst stories.
What are you blood counts?


Hi again Lola

Mine are total lymphocytes 14 and total white count is 19. Initially I had MBL so now its classed as stage A Chronic lymphocytic leukaemia (CLL). I really am confident from what I have read that you will respond well to these new treatments. I am sure that some have been functionally cured from these therapies. I hope I can stay stable for as long as possible.

Have you tried curcumin and green tea extract? I have been on curcumin since 2018.

Hi all. Haven’t posted in a while but so many of the comments hit home i yhought it might be useful to share my experience.

Like many of you i was diagnosed withh Chronic lymphocytic leukaemia (CLL) in 2020 at 54 and came as a shock same as everyone else. Take time to understand what your body is telling you and make the most of your hosiptal check ups. After 3 years my bloods and health deteriorated as i started treatment and blood transfusions early in 2023. After a year of obinutuzumab and ventoclax i have 4 weeks to go before treatment finishes. Bloods all back to normal and even managed to run a 10k in September for blood cancer. I hope to go into remission in june when treatment ends.

I count myself lucky to have been diagnosed although it didn’t feel like it at the time. Dont underestimate the benefit of finding out and have someone watching over you as opposed to duscovering it when its too late.

For those who might need to start treatment whilst its always a bit scary there is light at the end of the tunnel.

Take care all.