Welcome back!

Diagnosed with CLL in March

@Arson Hi Nick, welcome! how are you?
And what a supportive and encouraging message you wrote there :slight_smile: I’m so pleased to hear how much you have got out of reading about other forum member’s experiences. You’re giving just as much back in your wonderful support to others, so thank you Nick!

@CLL6 hello there! and I hope all is well with you? that’s such a good point you make about being kind to yourself and being careful to not push yourself too much- so well put too! It sounds like you get so much out of the swimming? As you say, hopefully you can resume this when the lockdown is over.

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Thanks for all these replies - hadn’t looked on the forum for a few days. Great to receive so many encouraging messages. Being in lockdown when newly diagnosed does make it harder I think - missing distractions of meeting friends and family and trips out. There is more time to reflect and worry and assume every little niggle is CLL related. Is there a rough guide on what white cell levels would start to cause symptoms or is it individual to each person?
Thank you everyone!

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Hi @Gwenda, yes, I agree, I know my emotions are all over the place in isolation, I expect yours are in overdrive, me and my head are often not a good combination, so you are not alone. As for your million dollar question, I am not a medical person, but I think so many variables are taken into account and of course we are all wonderful individuals with existing medical histories. Also, yes every niggle and I go into panic mode. The variables might include the graph of progression of test results and other symptoms we might have. I know it sounds so easy to say but active monitoring (watch and wait) is for me a positive place to be. Please keep posting what is going on for you so we can all support each other through lockdown and beyond.

Hi welcome @Gwenda you sound remarkably together at the moment considering how recently you were diagnosed. I suspect it might not always feel like that, although everyone reacts differently. For me personally it was a huge shock but I was quite sick with an infection at the time. Please don’t read my story too soon as you might find it worrying as I did have quite a rough time. But two things about that, firstly I was rather unusual and the way it has been described to you that you may not notice that much different for a good few years is more common. Also I did come through treatment in a lot better position and I am walking proof there is life after treatment. I would encourage you as much as possible to get as fit as you are able to and eat healthily and try to ensure you have a healthy weight (not too thin or too fat) as that can only help your general fitness and wellbeing now and also moving forward. I have heard it suggested that fit people sometimes suffer less with fatigue and that sort of makes sense if they have a higher starting point. Having said all that there is no reliable evidence that anything we do like that actually alters the course of the disease itself which can be hugely variable all the way from needing treatment in a couple of decades or more right needing treatment almost straight away. So hence the need to be careful when you read stories! I am sure you are at least broadly following the governments shielding advice however and that does highlight the other thing you should be aware of. Even from early on we do have a weaker immune system so things like having some vaccines (especially flu which your whole family can now have free and pneumonia) and avoid live ones, and some version of at least some of the sorts of things we are currently doing for COVID19. Washing hands carefully and not sharing towels for example are two things that make sense to get into your life all the time even from early on as a habit as they dont really cost anything except maybe the need to wash towels more often. The uncertainty can sometimes be hard to cope with so for me I did like to learn more (the rest of this website is helpful for that) and benefited from talking to the support line but also a professional counsellor. Don’t be shy to ask for help and support. Anyway that’s probably enough for now but welcome to the club you never want to join but will be glad to know the members of I hope.

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Hello @Gwenda, I hope you’re doing okay today. It’s totally understandable that you have questions around levels of white blood cells and when they may start causing someone symptoms. In case it’s useful at all, we have a CLL booklet and in it there’s general information around CLL, including some information on page 56 outlining the different reasons someone might need to start treatment for CLL. Additionally, in case it’s helpful, page 11 of this booklet, has some guidance around healthy levels of blood cells. However, this is just a guide.
It can be very individual as to the levels blood counts need to be before people start to develop symptoms, and it may be down to more reasons than blood cell counts. We would really encourage you to speak to a member of your healthcare team such as your consultant, if you have questions around this, as they should be able to give you a clearer and more tailored information around this, in the context of your individual clinical circumstances.

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Hi again Gwenda
My consultant has told me (and obviously everyone is unique), as long as my Haemoglobin is above 10 and my platelets are above 100, he is not concerned with my white cell count going up.
Hope that answers your question but, please don’t be afraid to ask your consultant what he/she finds acceptable. All the best. Xxx

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Hi, thanks for the info. Just looked at my blood tests on GP online access. That gives me some idea of what to look out for. I’m feeling a bit in the dark as to how this disease can progress. I am feeling very well so far. Also wondering whether I should be doing the extreme shielding I am doing when Consultant and GP say my immune system is very good and am at Stage 0. Have been ok doing so far but if this continues for months…
Thanks

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Hi Gwenda, I glad you are getting your head round things a little bit. I think your words ‘Have been ok doing (shielding) so far but if this continues for months…’ echoes so many of our thoughts, we await, better safe than sorry. We will all support each other through theses times. Keep posting.

Hi @CLL6 I hope you’ve been doing okay? That’s so encouraging to hear that you were able to get further clarification from your consultant, I hope this gave you some further clarity and reassurance. As you rightly say, we do encourage to not be afraid to ask questions, what’s most important is feeling as comfortable and informed as possible.

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@Gwenda I hope you are doing okay? It’s so good to hear you were able to speak about this with your GP and consultant, but it’s only natural when there’s so much to take in, to still have questions and need further clarification. There’s no pressure at all to absorb everything immediately, this is why we really encourage people to get in touch their treatment team to talk through any questions or concerns around advice they have been given.

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Hi @Erica I hope you’re okay? as you say, it’s the how long and the uncertainty which can be so tricky to deal with. But please always remember there is always support here whenever you need it, and it’s so encouraging to see how much the forum community has grown over the last few months and to see such strong mutual support from you all!

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Thanks Sue.
Thanks also for all the work you and the team at Blood Cancer UK are doing.
Xxx

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Hi I’m new here I had cll and it transformed into lymphoma my chemotherapy hasn’t worked

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Hi @John1, I have responded to your other post today but it is a really good idea to post all over this forum and you might even find other interesting, informative posts from others, take care and I look forward to hearing more from you.

Thank u for your advice Erica I will do that

Hi again @John1 thank you so much also for your other post. I’m so sorry to hear about your situation. How are you feeling? Have you been able to talk any of this through with your treatment team?

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A post was merged into an existing topic: Guide to getting started

Hi I’m Ron 73 years old
I have just been diagnosed early stages of CLL
Been to see the specialist and he has advised that I wait until there are signs of symptoms then he will take action
Not very helpful as I don’t have any idea of time or what the symptom will occur
Has anyone any advice please
I know I am not a young chap but consider myself a fit 73 year old
Thank you

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Hi Ron, welcome to our community, you are very welcome. You must be in shock. I was lucky enough to celebrate my 70th just before lockdown.
I was diagnosed with CLL in 2003. It is quite common to be put on what they call ‘watch and wait’ or ‘active monitoring’ where we might have regular tests and check up’s. I have been a very lucky girl and been on it since diagnosis. What it does mean is that we learn to manage any symptoms we have been diagnosed with. Other people have treatment as soon as diagnosis.
You ask for advice, what I find helps me is to write down any anxieties, questions, medical history or symptoms you might have before appointments.
I have altered my diet a little bit to be a bit healthier, but I also have the odd treats, chocolate and shortbread and my weaknesses.
I try to do appropriate exercise, I am a pilates girl.
We are all here to support you and the wonderful Blood Cancer UK Support Services Team is available on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
Be kind to yourself, I still don’t know what I want to be when I grow up, do you know what you want to be?

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Welcome to the forum @Ronmun, really glad you’ve found this community. I hope you don’t mind i just moved your topic into an existing CLL topic so that they’re all in one place and also so you can see what others have shared about their experiences with CLL.

I hope you’re doing OK after your diagnosis. I can only imagine what a shock it must have been for you. In case it helps, here is our information booklet on CLL and also our web-pages on understanding watch and wait, which as @Erica said, is quite common with CLL, and is a way of monitoring people who don’t need treatment straight away, with regular check-ups and blood tests.

If you want to talk this through with us, we are only a phone call away on 0808 2080 888, please don’t hesitate to get in touch.

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