CLL patients in UK

[Vocals]

Hi. Is anyone in this group from UK please? I am a newly diagnosed CLL patient in the WW stage and it will be good to connect with others in UK.

[nanasu]

I`m from the UK and I think there are quite a few others too.

Happy to help where I can but there are others more informed than me. Lots of info here......just needs time to read it all.

I wish you well in your journey and long may you stay on W&W.

Take care.

[Lennc]

Hi

I’m from the UK. I am also on W&W after diagnosis in June. You have come to the right site for information as there are plenty of fellow CLL people on here with plenty of knowledge.

Kind regards

[CguLLer]

Lots on here from the UK. If you want to ask a question specific to UK, such as treatment options, put UK in the post title. If you click on a posters name you can see which country they are in if they have completed their profile page.

If you click on the More icon at the top right of the page and go to “Find people near me” you can see if there is anyone local to you.

David

[Vocals]

Thank you. I am new here. I’ll try that.

[Newdawn Administrator]

Hi Vocals and welcome!

This site is U.K. hosted and is the online arm of CLL Support, the U.K. charity dedicated to CLL/SLL patients and people affected by the condition. You may find it useful joining the organisation if you haven’t already. Here’s details of this site on the link below. As a result there’s many many thousands of Brits on here but we have the advantage of an international perspective too and whilst health systems may differ across the world, CLL’ers face the same challenges and emotional hurdles. CLL Support organise excellent conferences in non Covid times and hold webinars you may find helpful.

healthunlocked.com/cllsuppo...

I see you are very, very early stage and it must feel like many of the terms are like a foreign language. Familiarise yourself in your own time and don’t be afraid to ask questions or seek support. There’s no need to feel lonely with this, you can guarantee they’ll be others who know exactly how you’re feeling.

Best wishes going forward,

Newdawn

[bennevisplace in reply to Newdawn]

Newdawn, do you have any stats on membership by country?

[AussieNeil Partner Administrator in reply to bennevisplace]

The most recent stats for the top four countries from a year ago for the 3,900 active members back then were:

USA 44%

UK 31%

Australia 9%

Canada 7%

There are only a few countries not represented in our membership.

Neil

[bennevisplace in reply to AussieNeil]

Thanks!

[mrsjsmith]

Vocals further to Newdawn’s excellent reply the CLL support run ( if you are ? ) an under 60’s group run by Norah. And on the pinned posts on the right there should be an excellent post by PaulaS about things to know when first diagnosed. Especially useful for finding out all the vaccines to have.

Colette

[JigFettler Volunteer]

Welcome. There a lot of us. In the UK plenty, and through our Forum experiences from many parts of the world. We continually learn so much from each other at many levels.

CLL is a variable condition, each of us react slight differently - indeed there is a lot to learn. The journey is long, dont rush. And talk to us - the Forum is lively!

Jig, in the UK!

[Vindicatrix]

Hi Vocals, welcome to the group, I was diagnosed three and a half years ago with CLL. Still on Watch and Wait. I have found this site to be invaluable, with information, pertinent to us, and with very good and well meant support. I am free for a chat, anytime, All the very best Ron.

[lankisterguy Volunteer]

Hi Vocals,

-

Welcome to the group. We USA members read so much from the UK posters we are actually learning to understand the unique UK phrases. LOL

.

If you want to see who among us are your nearby neighbors you can use this link

healthunlocked.com/people-n... or right click on your own icon in the upper right corner of this screen (on a computer screen).

-

Len

[223dogs]

Hi, yes I'm in the UK. Also on WandW. Diagnosed nearly 7 years ago now. While we wouldn't want our diagnosis this group is amazing, lots of useful information. Good luck on your journey

[Haileybury]

Hi, VocalsI am in Herefordshire and have got so much help over the last 7 years on this site. I’m on my 4th line CLL treatment, am 82 and doing Ok. Good luck.

Haileybury

[FairweatherSailor]

Hi, I’m in the UK and have been on W&W for 5 years. This site is a great resource and a great support ! Good luck.

[Vocals in reply to FairweatherSailor]

Thank you so much

[Hamish_McTavish_III]

Hi Vocals,Another one here from the UK! Diagnosed around a year ago and on W&W. Apart from a few early scares and emotions I have now settled down into a more relaxed pattern of life thanks to my Consultant and the help from others on this great site. I hope your journey goes well.

[stevesmith1964]

Hi, I am UK based. Diagnosed 12 months ago with Stage 4 CLL with 100% infiltration. I am 57. I went straight to treatment and as of July I am in remission and enjoying life. Had all 3 jabs and two doses of Covid in that time.Happy to share experience

[Mtk1]

Welcome vocals,I’m also from UK diagnosed 2016 w&w for 5 years and now on treatment with acalabrutinib, you are very lucky to find this site so early in your journey with cll, I only discovered it when starting treatment and wish I had found it earlier, as has been said you will find lots of good advice and information on this site all you have to do is ask. I have found out so much information and read posts daily.

Dave.

[Vocals in reply to Mtk1]

Thank you so much. I am so confused at the moment as I am in early stages.

[Mtk1 in reply to Vocals]

My auntie has been on watch and wait for over 25 years, I know when 1st diagnosed you are full of questions and worry a lot but in time you will feel better I’m sure.Dave

[Vocals in reply to Mtk1]

Wow that’s re assuring.

[blowinginthewind]

I am from UK - Greater Manchester - and I nearly 4 years post diagnosis, on W&W. I would strongly recommend that you join one of the Leukaemia Care CLL support groups, because they really help to get to know other people. I am a patient at The Christie in Manchester and our groups were meeting pre-pandemic in Maggies Centre there. Now they are on zoom, but face to face will resume eventually. There is also a Facebook group for people in UK with CLL and that is friendly too. The big thing I would say is get a consultant you like and trust. My first one was dreadful - so I asked GP for second opinion from the one at The Christie, and he moved me onto his list. I had been told by a friend that that is what would happen 🙃

Regarding local support groups, Leukaemia Care website will have details - [e-mail]@leukaemiacare.org.uk is the email address for support information, and they will be able to give you details of a group local to you - you can go to any of the zoom ones.

I was shocked when I got my diagnosis, and my family were shocked as well, and all very scared. Both Leukaemia Care and Blood Cancer UK do free booklets about CLL which you can order online, or just read online. I organised these for my adult daughters who were very keen to offer themselves as donors if I needed a transplant - which of course I don't and probably won't, very rare with CLL to need one. But people have a particular concept of leeukamias which is very different from the actual situation with CLL. The fear gets better though,

Liz in UK

[Salohcin]

Hi VocalsWelcome aboard. I’m from the Uk (Lancashire) just finished FCR and five years on W&W. I have had such great support and advice from people on this site so you are in the best place.

David

[Vocals in reply to Salohcin]

Thank you so much 🙏 I am at the start of my journey with CLL and am so confused

[Jacksc06]

Hi. Welcome to the family. I am in Lincoln UK.

[bennevisplace]

Hello Vocals. According to our Admin team there are around 1,200 active members of CLL Support based in the UK. Questions rarely go unanswered and answers can come from anywhere in the world.

CLL is a very well researched condition, and you can bet that someone in the group will alert the rest to new treatments etc. Since I was diagnosed, nearly 15 years ago, more and better drugs have become available in the UK, a trend that's sure to continue. Though a chronic illness, said to be incurable, CLL can be managed indefinitely for the vast majority.

The course of CLL differs from one person to the next, but for most it's years before they become a "patient" needing treatment. A third or more never need treatment - and probably never check in with CLL Support!

At this stage the best advice I can give is don't worry about what you can't change, eat well, maintain your fitness and get on with life.

[Vocals]

Thank you 🙏

[Floxxy]

Hi, I am in the UK too. I was diagnosed in 2018, had FCR in 2019 and have been in remission for over 2 years now and feel fine. Live would be reasonably 'normal for me if it weren't for Covid!!! I hope all goes well for you x

[Adlucy]

Hello. I am in the UK, in the South East and was diagnosed in September 2020. It was first suspected a year before following a Well Woman test. I am on Watch and Wait too. As others have said, I have learned so much from having joined this forum. You will too.

Take care.

[Vocals]

Thank you 🙏

[Izzy123gym]

Hello Vocals and welcome! I was diagnosed 3 months ago so can empathise with the feelings of shock and disbelief at the diagnosis. I am now coming to terms with some acceptance of the situation. There is a huge amount of knowledge and expertise on this site; I felt reassured by that fact!

I am in Aldridge in the West Midlands; I think you'll find people from most regions of the UK.

Take care!

[Vocals]

Thank you for your response. Yes my head is all over the place. I am in Essex 🙏

[MickUK]

Hi Vocals. I was diagnosed earlier this year and I am so grateful that I found this fantastic forum early on. Ask your questions here and don't use google as most things that you find are out of date.

I am in Hampshire, by the way!

[arsenal0]

Hi Vocals,I too live in Essex, diagnosed a couple of weeks ago.

Like some here, still trying to take it all in.

I am so glad I found this site as google was freaking me out.

I feel so much better reading actual facts and other peoples experiences.

Hopefully you feel the same and are now less anxious.

Take care and good luck for the future.

[Vocals]

Thank you

[Pekingese]

Hi Vocals, I’mFrom the Uk. Diagnosed 2 years ago on W&W. This site has been so helpful and so friendly. Ros 🌹

[Lawand1]

Hi from Hampshire. 55 yrs. Diagnosed almost 14 years ago. On 3rd treatment and have overwhelmingly lived a normal life. You can too, just cross check with your docs if you’re doing anything your unsure about. Be well.