Welcome to the CLL Support community on HealthUnlocked, a very active community with 23,000 members. This pinned post is specifically for new members, in particular those that have been recently diagnosed with Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma CLL/SLL or even the precursor, Monoclonal B-cell Lymphocytosis (MBL). CLL and SLL are the same disease, with the SLL variant confined mainly to the lymph nodes.
Our Community Guidelines and how to keep you and our community safe
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30 tips for living well with CLL
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Beyond the Diagnosis: Surviving and Thriving with CLL / SLL
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How to navigate HealthUnlocked
There's a wealth of information here. This is how you can tap into it:
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12 Tips to get more out of our Forum
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So you just got diagnosed? Read CLL for dummies
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- What do I need to know?
A Flow Cytometry blood test is used to diagnose CLL. Of note, CD38 negative is a good prognostic marker
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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.
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- Do I tell others?
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- Informing Your Young Children
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Live in the UK and referred back to your GP for CLL management?
You should be low stage with indolent CLL (good), but your GP should also have been informed about how to manage your care per these example letters
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Staging and why it's different than for solid tumours; stage 3 or 4 doesn't necessarily mean treatment will soon follow
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An overview of prognostic markers in patients with CLL (May 2024)
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Prognostication and therapeutic options. Introductory Editorial and references (March 2024)
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CLL: Current Knowledge and Future Advances in Cytogenomic Testing (Prognostic Markers, from Feb 2023)
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The importance of IGHV mutation status testing
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CLL is a cancer of the immune system, so knowing more about your immune system could save your life! Learn how to reduce your risk of infection and know when to seek medical assistance
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What about MBL - Monoclonal B cell Lymphocytosis?
The risk of progression to CLL/SLL depends on whether you have high count (1 to 2% progression risk per year) or low count MBL (unlikely to progress)
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Immune dysfunction with MBL
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VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (CLL/SLL)
- Yes, this post title is all in capitals, because getting up to date with your non-live vaccinations after your diagnosis could well save your life. Our degree of immune system compromise worsens over time beginning with MBL and vaccinations don't work well during and for a while after CLL treatments. Most of us die with CLL, not from CLL, due to our increasing risk of fatal infections. Having antibodies reduces the severity of infections - ask any CLL specialist!
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What is CLL/SLL?
Keep in mind that CLL is a slow growing chronic blood cancer, which has been found to begin decades before eventual diagnosis. It's rare that treatment is needed soon after diagnosis.
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This must see video by Dr John Pagel "Not your Father's CLL" answers many commonly asked questions and shows how close we are to curing CLL.
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Dr Philip Thompson is a clinician and researcher from the MD Anderson Cancer Centre, who relocated to Melbourne, Australia. In October 2019, he presented the latest research and directions in CLL management and treatment in this hour long video.
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How CLL cells can be killed
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Why CLL is so very hard to cure - the role of the Tumor Micro-environment
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A decade of improvement in Chronic Lymphocytic Leukemia treatments means a shorter life expectancy is no longer a given
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In Towards Control Of Chronic Lymphocytic Leukemia With Targeted Agents, Michael Hallek, the Director of Germany’s Center for Integrated Oncology, provides a great snapshot of the current treatment landscape for CLL, telling the story of how the vastly improved approaches of today have developed over the past 20 years. It also addresses the next challenges for CLL treatment and the most important questions still to be answered.
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CLL Treatments. A primer BTK (acalabrutinib, ibrutinib, zanubrutinib) or BCL-2 (venetoclax).
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A newly released set of web pages, with text and videos with Dr Nicole Lamanna and Dr. James Gerson.
Explains in layman’s terms what each treatment provides and the expected side effects.
The growing number of BTK inhibitors and other common and developing CLL treatments healthunlocked.com/cllsuppo...
Drs. Stilgenbauer, Davids, & Scarfò discuss #CLL at #ESH2024 #ESHCLL2024
- Finite Therapy, Infinite Possibilities in CLL (Exploring the rapid emergence of newer time-limited BTKi combinations)
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Questions to ask your consultant/specialist
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Considering seeing a Naturopath?
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Why did I get CLL?
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Some of us have a genetic tendency to develop CLL, with about 7 to 10% of us having Familial CLL. Our blood relatives may have a slightly higher risk of CLL or other blood cancers
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Genetic testing, FISH, Clonoseq, IGHV, TP53, ATM, etc.
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Watch and Wait, What does it entail?
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About a third of us never need treatment and may only need monitoring by our regular doctor (PCP/GP). Determining if you'll never need treatment. It is feasible and safe to stop specialized follow-up of asymptomatic lower risk CLL?
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When will I need treatment?
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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: healthunlocked.com/cllsuppo.... Some members have been doing well on maintenance Ibrutinib for over 10 years and on a second generation version Acalabrutinib for over 7 years. Newer, non-chemo limited treatments are providing long remissions after just over a year of treatment. Per healthunlocked.com/cllsuppo... "CLL ... has now been transformed from an incurable leukemia to one potentially functionally curable, or even molecularly curable, with a finite duration of therapy".
With the targeted therapies, even those with 17p del/mutated TP53 CLL do well, so life expectancy statistics found with internet searches are way out of date, because they related to when we only had superseded chemoimmunotherapy treatments (BR, FCR, etc.).
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Be aware that due to CLL compromising our immune system, we are at increased risk for some secondary primary cancers
Pregnancy and CLL
We have several members who have successfully negotiated this rare circumstance
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Does having CLL really make you 3 times more likely to get (another) cancer, and does CLL treatment add to the risk? - Part 1
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- Richter's Transformation/Syndrome
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This post covers 70 years of history in the development of increasingly better treatments: healthunlocked.com/cllsuppo...
Seeing a "CLL specialist", rather than a general oncologist or haematologist is likely to add years to your survival time: ncbi.nlm.nih.gov/pmc/articl...
CLL Society provides three lists of doctors for your perusal here:
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That's why, with the latest great treatments, It's time to start talking about ways to enhance survivorship!
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Member feedback
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Learn more about CLL - knowledgeable patients get the best care and live longer!
First, you'll need to know common acronyms, abbreviations and definitions!
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"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."
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THINGS WE CAN DO to improve our CLL journey
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While there is every growing evidence that improving your fitness pays dividends, most of us reassess our diet following diagnosis. Here's MD Jacqueine Barrientos, associate professor of medicine at the Zucker School of Medicine in New York presenting for the Leukemia and Lymphoma Society of USA's Ask An Expert program providing recommendations on diet including vitamin D supplementation.
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- Optimal vitamin D level is associated with a longer time to first treatment and improves sense of fatigue
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Dr Barrientos' introduction to CLL for newly diagnosed (2020) is also worth a look: thepatientstory.com/medical...
How to use your Patient Portal (if you have one)
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Our members share why they prefer to see a CLL specialist, rather than an oncologist or haematologist with an interest in CLL
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Free second opinion from CLL specialist (unfortunately USA residents only)
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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
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- What to do? Just diagnosed, no treatment, very scared (replies are very helpful)
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- The Tyranny of the positive: Is it unkind to encourage others to deny their emotions?
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- Completely bonkers! (lots of reassuring replies)
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- You are not imagining things nor are you alone and you may not feel listened to.
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- Changing my sense of reality (Diagnosis)
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- I’m still standing! The 8th anniversary of my CLL
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- Irredeemably Altered...A story of Diagnosis
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- Newly Diagnosed Age 49 (x2), Age 55
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- Why CLL feels different to other types of cancer
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- Hurt and puzzled
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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.
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If you're feeling like the glass is half empty, then we would like to hear from you. Please tell us!
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Your turn. Please Introduce yourself! How to write your first post
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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.
Complete your HealthUnlocked profile to help others help you better
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After diagnosis, what happens next?
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Getting the most out of your appointments
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Recording your appointments for later review if you can't have someone accompany you
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The purpose of different blood tests:
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You might like to track your blood test results using a spreadsheet template available here:
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Don't stress over changes in your blood test results. Fluctuations are normal; it's trends that are important:
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Tips for easier blood tests (draws)
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Maintaining adequate kidney function is important. The estimated Glomerular Filtration Rate (eGFR) blood test is used to assess your kidney function, but relies on you being well hydrated for a more accurate creatinine result. See: healthunlocked.com/cllsuppo....
Shared experiences and tips on having bone marrow biopsies
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Support Groups specifically for CLL/SLL
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CLL Support - only UK charity dedicated solely to CLL
- Upcoming meetings
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CLL Society Support Groups in the USA
- Register
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- Support Group meetings this month
CLLSA/Leukaemia Care CLL buddy scheme & help line for UK people living with a diagnosis of CLL.
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Does CLL CAUSE skin cancer? Bone loss? Pneumonia? Skin issues? Low Vitamin D3? Autoimmune issues like AIHA & ITP ?
Correlation doesn't necessarily mean Causation!
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Check out more of our pinned posts here healthunlocked.com/cllsuppo...
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:
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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: support.healthunlocked.com/...
CLL Information resources
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Leukemia and Lymphoma Society of the USA - 3D animated models of how CLL changes our health
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International CLL Information and Resources.
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Last updated 18th October 2024
Neil
FDA Approves Zanubrutinib for Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphom
Results on triple combination (A+V+O) for high risk patients -with-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma-cll
