Newly diagnosed with Chronic Lymphocytic Leuke... - CLL Support

CLL Support

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Newly diagnosed with Chronic Lymphocytic Leukemia - CLL or just found us? This post is for you!

AussieNeil profile image

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

So you just got diagnosed with CLL - for dummies

Just Diagnosed: What do I need to know? Dr. Neil Kay (Mayo Clinic) and Dr. Brian Koffman (CLL Society) discuss how to stay healthy & everything else you need to know when first diagnosed, including confirming your diagnosis, prognostic testing and vaccinations, and what to watch out for, and much, much more.

The importance of IGHV mutation state testing

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?

Some of us have a genetic tendency to develop CLL, with about 7 to 10% of us having Familial 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". People have been doing well on maintenance Ibrutinib for nearly 10 years and on a second generation version Acalabrutinib for over 4 years. Newer, non-chemo limited treatments are providing long remissions after just over a year of treatment.

This post covers 70 years of history in the development of increasingly better treatments:

Seeing a "CLL specialist", rather than a general oncologist or haematologist is likely to add years to your survival time:

Member feedback

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

Our members share why they prefer to see a CLL specialist, rather than an oncologist or haematologist with an interest in CLL

Free second opinion from CLL specialist (unfortunately USA residents only)

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

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

- 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?

- Completely bonkers! (lots of reassuring replies from our community members)

- 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

- Newly Diagnosed Age 49

- Why CLL feels different to other types of cancer

- Hurt and puzzled

Some of us find adjusting to our diagnosis difficult (e.g. struggling with anxiety, depression) 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 UK CLL Support 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

About 10% of CLL is familial, so blood relatives may have a slightly higher risk of CLL or other blood cancers

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?

Getting the most out of your appointments

Recording your appointments for later review if you can't have someone accompany you

Complete your HealthUnlocked profile to help others help you better

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

This reference explains the purpose of different blood tests:

Shared experiences and tips on having bone marrow biopsies

Support Groups specifically for CLL/SLL

CLL Support in the UK (the only UK charity dedicated solely to CLL)

- 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?

Information on BTK inhibitors and other common and developing CLL treatments

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

Check out more of our pinned posts here

For information on this CLL Support community, including how you can support the UK CLL Support charity of which this is the patient on line support presence, check our About page:

If you are an Amazon customer, you can also support this and other CLL support charities through Amazon Smiles:

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:

Last updated 21st May 2021

7 Replies

Good Job Neil.

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

Fabulous compilation of Healthunlocked info!

AussieNeil A wonderful compilation, Neil! This will help me prepare for an upcoming in-person visit. Thank you very much for all your support in this group!!

I tried to read your Bio to see if you're a doctor. I never made it to the end. It was overwhelming. Much respect.

Thank you Neil

Thanks for all the links

Thanks for all the links and info. Very helpful asmI am about to embark on the Venetoclax and Rituximab journey.

Thank you!

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