Welcome back!

Diagnosed with CLL in March

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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