Newly diagnosed with CLL or just found us? Thi... - CLL Support

CLL Support
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Newly diagnosed with CLL or just found us? This post is for you!


Welcome to the CLL Support community on HealthUnlocked. This pinned post is specifically for new members, in particular those that have been recently diagnosed with Chronic Lymphocytic Leukaemia/Small Lymphoctytic Lymphoma (CLL/SLL).

How to navigate HealthUnlocked

There's a wealth of information here. This is how you can tap into it:

12 Tips to get more out of our Forum

What is CLL?

Includes a must see video by Dr John Pagel "Not your Father's CLL" that answers many commonly asked questions and shows how close we are to curing CLL.

Dr Philip Thompson is a clinician and researcher at the MD Anderson Cancer Centre in Texas. In October 2019, he presented the latest research and directions in CLL management and treatment in this hour long video.

Why did I get CLL?

How long will I live?

Don't make the mistake of Googling for survival times with CLL. With the long survival times with this chronic illness, it takes 10+ years to determine survival times with new treatments and not enough time has passed to see published statistics change with the new non-chemo targeted therapies, let alone when used in combination. FCR, which has been in use for 15+ years and is recognised as effectively curing about 55% of those who are IgHV mutated (about half of us), is only just beginning to make a difference in reported survival statistics. With the rapid advances in CLL treatment, most of us will die with CLL, not from CLL. See "CLL Trends over 28 years, and it’s all good news, even before we count the new drugs now just becoming available".

If you want to learn about CLL... (Text and Video resources)

First, you'll need to know common acronyms, abbreviations and definitions!

"The following is a long list of links and resources, too many to read and understand without dedicated effort. So please treat it like a smorgasbord buffet or a large box of chocolates- choose some that look good and try a sample. If the sample is satisfying go back for more, if not move on to others. Some people prefer videos, some like text explanations."

THINGS WE CAN DO to improve our CLL journey

We've all been through the shock of diagnosis. Some members share their story in the following posts

- I'm new here.....Diagnosed with

- What to do? Just diagnosed, no treatment, very scared (replies are very helpful)

- The Tyranny of the positive: Is it unkind to encourage others to deny their emotions?

- You are not imagining things nor are you alone and you may not feel listened to.

- Changing my sense of reality (Diagnosis)

- I’m still standing! The 8th anniversary of my CLL


- Irredeemably Altered...A story of Diagnosis

- Why CLL feels different to other types of cancer

- Hurt and puzzled

Some of us find adjusting to our diagnosis difficult and may find benefit from counselling or other professional help, often available through your specialist centre. Some may find medication helps.

If you're feeling like the glass is half empty, then we would like to hear from you. Please tell us!

Members of the UK CLL Support Association share their stories on video of their diagnosis, how it impacted them and their family, treatment and clinical trial experiences and much more - from September 2014

Your turn. Please Introduce yourself! Here's how to write your first post

Remember to lock your post by changing the selection to the question "Who can see my post? " to "Only community members" if you wish what you share to remain private.

After diagnosis, what happens next?

You might like to track your blood test results using a spreadsheet template available here:

This reference explains the purpose of different blood tests:

Support Groups specifically for CLL/SLL

CLL Support Association in the UK

- Upcoming meetings

CLL Society Support Groups in the USA

- Register

- Support Group meetings this month

CLLSA/Leukaemia Care CLL buddy scheme & help line for UK people living with a diagnosis of CLL.

CLL Information resources

International CLL Information and Resources.

When will I need treatment?

BTK and BCL-2 Inhibitors Reach New Milestones in CLL - February 2020

Check out more of our pinned posts here

Note that this is an unlocked post, so rather than reply and have your reply able to be found via an Internet search, write your own post as explained here and above:

2 Replies

Good Job Neil.

Now I see the How To Write a Post... Thank you!

Fabulous compilation of Healthunlocked info!

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