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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Here is a basic info graphic from USA Today: usatoday.com/pages/interact...
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Here is a similar graphical presentation from a website called Know Your CLL - knowyourcll.com/chronic-lym...
facebook.com/connectoncll/a...
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Here is a text introduction/ overview of CLL and common UK terms- very easy to read and understand
bloodcancer.org.uk/understa...
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Here is a video from CLLSociety.org where Dr. Brian Koffman & Dr. Neil Kay answer “Just diagnosed what do I need to know?”
healthunlocked.com/cllsuppo...
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Here is a video from Lymphoma Australia with a presentation from Prof. Peter Hillmen of the UK:
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Here is a set of short videos from L&LS Canada that provide a good basic introduction specific to CLL;
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A more general video: What is leukemia? Hematologic System Diseases from Khan Academy
youtube.com/watch?v=IB3iJUu...
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CLL for Dummies, a text posting on Health Unlocked CLL Support an online chat group:
healthunlocked.com/cllsuppo...
or the full list on a blog page: bloodcanceruncensored.com/a...
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A YouTube video on Infectious complications of CLL: prevention and treatment by Ben Kennedy, MB ChB, FRCP(UK), FRCPath, University Hospitals of Leicester NHS Trust, Leicester:
youtube.com/watch?v=5Hb9qxT...
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The CLL Society has these text FAQs about CLL: cllsociety.org/questions-an...
Or this toolkit: cllsociety.org/cll-sll-pati...
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If you are not already seeing a CLL Expert doctor see this: cllpharmacist.com/cll-speci... (a CLL expert sees primarily CLL patients and preferably runs clinical trials and participates in annual conferences like ASH, ASCO, EHA ehaweb.org/congress/ )
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Here is a list of questions to ask your CLL doctor (in UK= consultant) from the UK CLLSupport.org charity:
cllsupport.org.uk/informati...
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The Leukemia and Lymphoma Society of the USA lls.org (well worth joining - it's free) has recently released 3D/animated models to help us better visualize how blood cancers impact on our health. The following links are to annotated models of specific interest to those of us with CLL/SLL:
Lymph nodes, distribution (we have around 500), anatomy, circulation and filtration
lls.org/3d-model-library/ly...
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Blood cell development (hematopoeisis)
lls.org/3d-model-library/bl...
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CLL 3D Models, showing Proliferation Cells and the Crowding Out of Normal Cells
lls.org/3d-model-library/ch...
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Check them out on a desktop/laptop.
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And a link to another UK site with easy to understand videos and explanations – see the right hand column for an index of topics – after viewing the main videos.
cllsupport.org.uk/informati...
cllsupport.org.uk/informati...
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Understanding Your Blood Results - Information videos by Dr Susan Leclair, Chancellor Professor in the Department of Medical Laboratory Science at the University of Massachusetts:
Understanding Your CLL Blood Tests: Immunoglobulin, Complete Blood Counts, Platelets and More
patientpower.info/video/und...
patientpower.info/navigatin...
patientpower.info/experts-a...?
Here is a long list of specific blood test answers by Dr. LeClair
patientpower.info/bio/susan...
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Here is a good article on the immune system and its many component parts:
medicalnewstoday.com/articl...
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Are you NEW to CLL? Struggling with all the vocabulary, acronyms and numbers? Check the CLL Society website for the following:
•Abbreviations and Acronyms cllsociety.org/toolbox/abbr...
•CLL Glossary cllsociety.org/toolbox/cll-...
•Normal Lab Values (USA units) cllsociety.org/toolbox/norm...
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The special words doctors and nurses use can be hard to understand. You may see or hear these words at your doctor’s office, on the Internet, on the radio or TV, or in newspapers or magazines. We call these words “medspeak” or “high doctor” mlanet.org/page/what-did-my...
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Once you have read the above and given yourself time to digest it all, here is a similar list of topics to read
healthunlocked.com/cllsuppo...
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Here is a concise 2019 summary of Chronic Lymphocytic Leukemia: An Overview of Diagnosis, Prognosis, and Treatment ajmc.com/view/cll-overview-...
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And a website that has links to numerous web sites and articles about CLL. Some of them are duplicates of the ones listed above and below.
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A condensed overview of everything about CLL with statistics:
cllbiomarkers.com/chronic-l...
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Here is a more advanced explanation of blood components:
cancerandiblog.wordpress.co...
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blood cancers:
cancerandiblog.wordpress.co...
cancerandiblog.wordpress.co...
cancerandiblog.wordpress.co...
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Or something similar as a video- white board animation/spoken dialogue:
healthunlocked.com/cllsuppo...
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Here is a well written text explanation of prognostic indicators (FISH results 11q, Tri 12,13q, 17p; & UnMutated IGHV etc) cllsociety.org/2017/09/prog...
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This is a very good written text overview/refresher on the lymphatic system with very little scientific jargon
medicalnewstoday.com/articl...
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And a similar video version youtu.be/cCPyWFK0IKs
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A useful explanation of the Immune system: primaryimmune.org/immune-sy...
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Here is a Japanese Anime series about all the body and blood cell functions- presented in full Anime- cartoon type style with lots of action scenes: crunchyroll.com/cells-at-work
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A 2020 video series of many topics from our top CLL experts onclive.com/clinical/cll .
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The German CLL study group current trials in 2020 & 2021 youtu.be/eyKOwbqOU2w
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If you want to learn even more in more depth, and you enjoy reading text online, this site has an more comprehensive learning course that can also bring you up to speed on the CLL specific discoveries learned over the last few years
cllsociety.org/2016/03/diag...
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If you do better with explanatory videos Start here:
patientpower.info/chronic-l...
Patient Power is a for-profit patient education website offers instructive videos and more on many health topics including CLL.
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Here is a list of links to other resources: cllsociety.org/cll-links/
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Len
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Here is some initial reading that will help you to prepare for a discussion with your doctor, so you can ask more pertinent questions:
cancer.org/cancer/chronic-l...
and
cancer.net/cancer-types/leu...
This has more comprehensive details, but harder to read (see the section " IgVH mutation and CD38" and the chart at the very bottom of the page):
cllsupport.org.uk/informati...
Len
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healthunlocked.com/cllsuppo...
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When we are diagnosed with CLL, we need to appreciate that we are immune compromised to some degree. Our risk of infection tends to increase over time and during treatment, whether it is chemoimmunotherapy or the newer non-chemo treatments. We need to learn how to reduce our risk of infection, because infections tend to occur more often and take longer to recover from and we are more likely to need antibiotics. Getting up to date with (non-live) vaccinations can be a life saver. When our immunity is low, we are likely to succumb to opportunistic infections; bacteria and viruses always present that will use the opportunity. Some of us may need prophylatic antibiotics during dental procedures and prophlyactic antibiotics and antivirals are commonly prescribed during treatment.
Protecting ourselves from new infections just requires following these three basic rules
1. Constant, thorough hand washing and hand sanitizing.
2. Constant, thorough cleaning and sanitizing of surfaces that I touched.
3. Completely avoiding primary vectors of transmission
healthunlocked.com/api/redi...
Being proactive about infections and seeking early medical support may save your life. If you become seriously ill and your doctor's receptionist is unable to offer you an appointment within a day, stress that you are immune compromised and need urgent medical attention. Doctors leave room in their schedule for urgent cases - and you should be able to arrange an appointment fairly promptly. Obviously, don't abuse that privilege. Use it when you have developed a very high temperature or have other symptoms that indicate that your health is signficantly deteriorating. If your can't get an urgent appointment with your doctor or another doctor in the same practice with access to your case notes, go to a hospital emergency/ER/A&E. This is particularly crucial if you are under treatment, or are neutropenic or suspect you may be developing sepsis (see below for more information on this very dangerous situation).
Following are some selected references and past posts that provide an insight into what most people take for granted, but we do at our peril - a well working immune system.
The Immune System
healthunlocked.com/cllsuppo...
The Human Immune System (A Graphic)
healthunlocked.com/cllsuppo...
How the immune system works (Excellent overview)
White blood cells, the immune response, immunity, immune system disorders
healthunlocked.com/api/redi...
Fantastic 9 minute video of a lecture on the innate and adaptive (humoral and cell mediated) parts of our immune system and how they all work together
youtube.com/watch?v=LSYED-7...
What do healthy white blood cells do?
healthunlocked.com/cllsuppo...
Great animation illustrating how our immune system works
youtube.com/watch?v=AucZlvE...
Five life lessons from your immune system
Explains how different parts of your immune system work together. Note the comment about T-cell exhaustion, which is one of the ways CLL cripples our immune system - and we can't prevent that happening.
healthunlocked.com/api/redi...
CLL - a Cancer of the Immune System
(Note that the precursor to CLL, Monoclonal B-Lymphocytosis can also impact our immune system)
Dr. Neil Kay (Mayo Clinic), Immune function in CLL: What is wrong and why?
healthunlocked.com/cllsuppo...
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Bacterial infections
Our neutrophil white blood cells primarily protect us, but we are more likely to need antibiotics to assist our immune system overcome them. Finding the most effective antibiotic requires growing a culture from sampling nasal secretions, urine, pus, blood, etc, to identify the bacteria responsible.
Viral infections
With the exception of a few specific antiviral drugs generally given during treatment, we are reliant on our immune system to overcome viral infections. Antibiotics won't help unless we develop a secondary bacterial infection, so avoidance is key, aided by good hand washing. Coughing and particularly sneezing are very effective means of spreading viral infections and you need to be at least 2 metres/6 feet away to minimise your risk of infection. Unfortunately masks work better at containing coughs and sneezes
healthunlocked.com/api/redi...
than providing protection, but a well fitted N95 or better mask may help.
Fungus among us
Fungal infections are difficult to treat and tend to take a long time to overcome. Prevention is a far better alternative and this post provides a wealth of very important information about fungal infections.
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
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(specifically Ibrutinib)
Shingles and why prompt treatment is crucial
healthunlocked.com/cllsuppo... .
Boosting your immune system - Vaccinations
healthunlocked.com/cllsuppo...
- An example of why it's important. Opportunistic infections take advantage of our weakened immune systems, with pneumonia a potential killer
healthunlocked.com/cllsuppo... ...
Boosting your immune system - IgG Infusions
Low immunoglobulin counts - IgA, IgG, IgM, (hypogammaglobulinemia) is common in CLL
healthunlocked.com/cllsuppo...
If you have enough severe infections, your specialist may prescribe IgG infusions. These can be done intravenously every 4 weeks or more (IVIG), generally requiring around 5 hours in a hospital or clinic or subcutaneously - usually done weekly and at home. Subcutaneous infusions have the advantages of less side effects and better maintenance of your immunoglobulin protective levels.
uptodate.com/contents/overv...
healthunlocked.com/cllsuppo...
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Boosting your immune system - Exercise!
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
How to clean your house to prevent the spread of infections
theconversation.com/how-to-...
Determining your risk of infection
You might like to track your neutrophil and immunoglobulin blood test counts or during treatment, your lymphocyte counts, using a spreadsheet template available here:
healthunlocked.com/cllsuppo...
This reference explains the purpose of different blood tests:
healthunlocked.com/cllsuppo...
Protecting yourself against infections when neutropenic
Many CLL treatments cause low neutrophil counts. Neutrophils normally make up about two thirds of our white blood cells and protect us from bacterial and fungal infections. Sometimes CLL bone marrow infiltration, an enlarged spleen or even an auto-immune complication can cause neutropenia. Your specialist may prescribe Granulocyte - Colony Stimulating Factor (G-CSF) injections (Neulasta, Neupogen, Filgrastim, Zarzio, etc). These are injected into the subcutaneous stomach skin via a very fine needle and boost neutrophil production. If your bone marrow has completely stopped making neutrophils, it takes about 10 days for your neutrophil count to rise, but the usual response is much faster.
Low White Blood Cell (Neutrophil) Count Precautions
healthunlocked.com/cllsuppo...
Safe Eating for Poor Immune Function - Beyond the Neutropenic Diet
healthunlocked.com/cllsuppo...
Why we should follow the neutropenic diet post chemotherapy treatment
healthunlocked.com/cllsuppo...
Dental Work Prophylactics
Make certain whether you need them and you have what's right for you
healthunlocked.com/cllsuppo...
Adopting a Neutropenic Lifestyle if your are chronically neutropenic
healthunlocked.com/cllsuppo...
Sepsis/Febrile Neutropenia (This life threatening condition needs URGENT treatment by IV antibiotics.)
Also known as blood poisoning, this can be triggered by infections caused by bacteria, viruses and parasites. Early symptoms of sepsis include fast breathing or a fast heartbeat, high or low temperature, chills and shivering. It is one of the leading fatal situations in CLL, (the other is pneumonia) and early recognition and treatment is important. Discuss the signs with you family and care partner... we are at higher risk at all times, but particularly during and post treatment... all treatments.
If you develop these symptoms, go to a hospital Emergency/ER/A&E where you know you will be promptly seen. Stress your symptoms and you should be treated with the same degree of urgency as someone with a suspected heart attack - it is that serious!
healthunlocked.com/cllsuppo...
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Incidentally, unexplained fevers, weight loss and night sweats are known as B Symptoms and can be indicative that your CLL is becoming more active. See: 41/i-was-diagnosed-one-month-ago-and-have-started-having-terrible-night-sweats.
Measuring how compromised your immune system is by CLL - blood tests
healthunlocked.com/cllsuppo...
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Urinary Tract Infections (UTIs)
healthunlocked.com/cllsuppo...
Secondary Cancers
Unfortunately, because CLL adversely impacts our immune system, including the activity of our T cells that patrol for secondary cancers and can eliminate them before they become established, we are at higher risk of developing a secondary cancer. cancer.org/cancer/chronic-l...
We are particularly prone to skin cancers, so it's wise to take precautions with sun exposure and have regular skin checks.
Also, don't overlook the potential contribution of CT scans to your risk of developing secondary cancers. CLL specialists now use CT scans only when absolutely necessary. If you are in a clinical trial, see if you can arrange for an MRI scan in place of a CT scan, or argue for having them less often. See also:
cllsociety.org/2016/03/ct-s...
Richter's Syndrome/Transformation
Briefly, Richter's Syndrome occurs when a more aggressive lymphoma, usually diffuse large B cell lymphoma (DLBCL) and occasionally Hodgkins Lymphoma, arises in the background of CLL. It can be clonally related or de novo. There's around a 2 to 10% chance of this happening, with the higher incidence more common with specific prognostic markers.
cllsociety.org/2020/01/ash-...
media.leukaemiacare.org.uk/...
Please feel free to reply, referencing other posts that you have found helpful to you in improving your understanding of how to better look after your immune system.
CLL Medications and Corona Virus
Leukaemia Care Updated Patient Information - Richter's Syndrome in Chronic Lymphocytic Leukaemia 
