New member with CLL

[Turbomotive604]

Just reading a lot of comments on here and find it very informative, I've been diagnosed nearly 7 years ago but on my last visit to the specialist at the hospital last week I will need treatment shortly so watching for new comments and advice. Thanks everyone.

[Shevic55]

Welcome! Sorry you will need treatment soon. Are you having symptoms or are they recommending treatment for a different reason?

Wishing you all the best.

Shevi

[Turbomotive604 in reply to Shevic55]

My Spleen is enlarged Shevic 55 and the white cells are quite high, he just recommends I start treatment, I feel ok so I've said ill wait and see how i am on my next appointment in a few months time, I want to hold back as long as I can.

[Shevic55 in reply to Turbomotive604]

Oh, my spleen is around 20 cm, but I have normal WBC, so I havent needed treatment. From what I've read it's good to see a cll specialist as soon as possible....

How far is it to mayo for you?

[Turbomotive604 in reply to Shevic55]

What is Mayo Shevic? Excuse my ignorance I'm new to all this, I've been told very little regarding my condition as I've had no treatment as yet.

[Shevic55 in reply to Turbomotive604]

Oh sorry I think I confused your comment with one in another group that mentioned going to the mayo clinic in minnesota.

Where are you located?

[Turbomotive604 in reply to Shevic55]

I'm in the UK

[AussieNeil Partner Administrator in reply to Turbomotive604]

Welcome to our community Turbo motive!

A high white cell (specifically lymphocyte) count isn't a valid reason to start treatment, but a sufficiently enlarged spleen is. Read about the triggers for starting treatment in this pinned post:

healthunlocked.com/cllsuppo...

Importantly, if you meet the criteria for starting treatment, it's important not to delay too long, or you are likely to have a tougher treatment experience.

Neil

[Turbomotive604 in reply to AussieNeil]

Thanks Neil noted 😉

[DFM2018 in reply to AussieNeil]

Links to various videos frustrates me... when I get the nerve to come to this site and notice a topic on something am facing, I hope to read feedback or others experiences... I ain’t looking to click on 6 different links to videos with no prior synopsis of what to expect...

[AussieNeil Partner Administrator in reply to DFM2018]

You have highlighted a way where I agree we could do better. Perhaps you could help by replying with an overview of the video links after you watch them?

[GMa27]

What treatment are they recommending?

Glad you have time to get plan in order. 💕

[Turbomotive604 in reply to GMa27]

Not sure yet till my next visit GMa27 😕

[Shevic55]

Oh, also you may get more responses if you lock your original post, by clicking on the word more on the left under your post and restrict it to be viewed by the community only.

[Hevs333]

If you do not see a cll specialist I can highly recommend Clare Dearden in London or in Sutton at the Marsden they don’t start treatment until you really have to but are able to monitor to know when you need treatment. She is also very optimistic and is always happy to tell you about treatments on the way

[Turbomotive604 in reply to Hevs333]

Thanks Hevs333

[AdrianUK in reply to Turbomotive604]

I would definitely support getting a second opinion from a CLL specialist before treatment or at least from one of the FLAIR sites (Flair is a big research trial going on at the moment and the sites running it are a good place to go for a systematic review of whether it’s time for treatment or not).

Whereabouts do you live? What’s your nearest city? And if it’s London are you more able to get to Euston, Liverpool Street or so where in west or south London? Geography makes a difference too.

Claire Dearden is semi retired so if you are starting out what will be a career of being a patient it may be better to choose one of the other great experts in the Uk.

Options include Prof Peter Hillmen in Leeds, the UCLH team at Euston (the largest haem unit in Europe and leader in CART), Bart’s Hosptal near St Paul’s, The Royal Marsden, and several others.

Also if you want your second opinion to come from someone more local who is not necessarily one of the top tier experts you can look at this flair list. You might even find your current hospital is on the list which would be reassuring:

google.com/maps/d/viewer?mi...