When we are diagnosed with CLL/SLL or the precursor MBL, we need to appreciate that we are immune compromised to some degree. Our immunity also worsens the longer we live with our diagnosis and also with CLL treatment, so infections can significant impact our life expectancy. (Growing older doesn't help either.) I've separately replied here: healthunlocked.com/cllsuppo... with my suggestion of how blood tests can be used to monitor our immune system health.
So to live long and well, we need to learn how to reduce our risk of infection, because infections tend to occur more often, we take longer to recover from them and we are more likely to need antibiotics. Despite the incredible and unprecedented improvements in CLL treatments over the past decade, infections remain the leading cause of death, as determined by long term follow-up, (median 13 years), from the CLL4 trial: hematologyadvisor.com/home/...
"The data from the LRF CLL4 trial included cause of death for 600 patients. 43% (n=258) of patients died from infection. Infections included pneumonia (67%), sepsis (38%), and opportunistic infections (11%)"
This is why being up to date with (non-live) vaccinations can be a life saver. healthunlocked.com/cllsuppo... When our immunity drops to a new low, we are likely to succumb to opportunistic infections from resident bacteria, fungi and viruses, for which we'll then need assistance. Some of us may need prophylactic antibiotics during dental procedures and prophylactic antibiotics and antivirals are commonly prescribed during treatment. That's reflected in the 2023 White Paper Compromised: Uncovering the immune-related challenges facing people with chronic lymphocytic leukaemia by the CLL Advocates Network (CLLAN).
healthunlocked.com/cllsuppo...
Dr Jennifer Brown, the Director of the CLL Center of the Division of Hematologic Malignancies at Dana-Farber Cancer Institute, notes the importance of highly vaccinating people with CLL and providing replacement IgG therapy as appropriate, in a short introductory interview about a Danish study into the mitigation of major risk factors for infections when we have CLL
healthunlocked.com/cllsuppo...
What Not to Do When You're Immunocompromised
webmd.com/a-to-z-guides/ss/...
Per this Science Direct review article, Infections in patients with chronic lymphocytic leukemia
Infection is a major complication in patients with hematologic malignancies. The increased risk of infection is a consequence of severe immunosuppression caused by the disease itself and its treatment. The effects of cancer chemotherapy on the immune system include bone marrow suppression resulting in neutropenia, mucosal barrier disruption and suppressive effects on T-cells and B-cells. On the other hand, the treatment of hematologic malignancies has changed substantially over the past 15 years, with the introduction of novel therapies that, unlike conventional chemotherapy, have specific targets in neoplastic cells, potentially reducing the deleterious effects of the treatment on host immune defenses. However, infections may occur, either by a predicted effect of these agents on the immune system, or by an unanticipated immunosuppression. Therefore, the introduction of these novel therapies represents new challenges for the proper management of patients with hematologic malignancies.
sciencedirect.com/science/a...
Table 1 in this article provides a useful reference of Drugs and regimens used in the treatment of chronic lymphocytic leukemia and the risk of infection. Before reading more of this comprehensive post, you might like to read cajunjeff 's "CLL and the immune system for dummies" overview here: healthunlocked.com/cllsuppo...
Protecting ourselves from new infections just requires following these thee basic rules
1. Constant, thorough hand washing and hand sanitizing
2. Constant, thorough cleaning and sanitizing of surfaces that we touch
3. Completely avoiding primary vectors of transmission
medium.com/@amcarter/i-had-...
- A well fitted respirator protects you from airborne infections
healthunlocked.com/cllsuppo...
How to clean your house to prevent the spread of infections
theconversation.com/how-to-...
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, so 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 significantly 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).
Video with transcript: Expert discusses strategies to combat infections in patients with CLL
healio.com/news/hematology-...
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
- for Dummies and Beyond
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- More detailed
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
medicalnewstoday.com/articl...
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
- What do healthy white blood cells do?
healthunlocked.com/cllsuppo...
- Great animation illustrating how our immune system works
- 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.
theconversation.com/five-li...
CLL - a Cancer of the Immune System
Note that the precursor to CLL, Monoclonal B-Lymphocytosis can also impact our immune system.
healthunlocked.com/cllsuppo...
Dr. Neil Kay (Mayo Clinic), Immune function in CLL: What is wrong and why?
healthunlocked.com/cllsuppo...
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Managing the risk of infection in patients with Chronic Lymphocytic Leukaemia treated with targeted therapies
healthunlocked.com/cllsuppo...
1) 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. There's evidence that CLL impairs the function of neutrophils: healthunlocked.com/cllsuppo... Finding the most effective antibiotic requires growing a culture from sampling nasal secretions, urine, pus, blood, etc, to identify the bacteria responsible.
Note: If you think you have an allergy to Penicillin, you are probably wrong. Finding out could save your life! healthunlocked.com/cllsuppo...
2) 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 smithsonianmag.com/smart-ne... than providing protection, but a well fitted N95/FFP2 or better mask may help.
- Latest COVID-19 guide for immunocompromised blood cancer patients from the International COVID-19 Blood Cancer Coalition (ICBCC)
healthunlocked.com/cllsuppo...
- Measles risk
healthunlocked.com/cllsuppo...
3) 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...
healthunlocked.com/cllsuppo... (specifically Ibrutinib)
How did I catch a cold when isolated?
Ever wondered why you still became ill (not just with a cold) despite taking extreme care to avoid infections? Some bugs can survive a long time in our environment before infecting us and it can also take a while for an infection to develop. Opportunistic infections can arise when our immune system is particularly challenged.
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......
- To reduce the risk of a painful, possibly infected arm, make certain your skin is cleaned prior to vaccinations!
healthunlocked.com/cllsuppo...
What is Pneumonia?
healthunlocked.com/cllsuppo....
Professor Chris Whitty explains the history of vaccinations and how they work, while acknowledging that they are not always a suitable way to tackle a disease.
healthunlocked.com/cllsuppo...
(Prof Chris Whitty is the Chief Medical Officer (CMO) for England, the UK Government's Chief Medical Adviser, Chief Scientific Adviser at the Department of Health and Social Care and head of the National Institute for Health Research (NIHR). He is also Gresham Professor of Physics (the term for medicine when the post was created in 1597) at Gresham College.)
Interview Video (from February 2021)
gresham.ac.uk/lectures-and-...
Presentation Notes
s3-eu-west-1.amazonaws.com/...
- Exercise! It's as easy as a walk in the park!
Four minute overview of how your immune system works and how exercise boosts it.
m.youtube.com/watch?v=MLw2Y...
healthunlocked.com/cllsuppo...
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- 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. There's no need to schedule vaccinations around IgG infusions; that requirement is only relevant for live vaccinations, which we shouldn't have.
Ontario study showing benefits
healthunlocked.com/cllsuppo...
uptodate.com/contents/intra...
healthunlocked.com/cllsuppo...
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More member experiences of IG Replacement Therapyhealthunlocked.com/cllsuppo... US qualifying requirements (also see other reply by SeymourB in this post)
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Don't forget your dental health!
healthunlocked.com/cllsuppo...
Dental health is further discussed in this post, which includes a link to the American Dental Association protocol on antibiotic prophylaxis healthunlocked.com/cllsuppo...
CLL treatments and the immune system
healthunlocked.com/cllsuppo...
Dr. Adrian Wiestner of the National Institutes of Health on the impact of CLL on the immune system and post treatment recovery (from AS 2018)
cllsociety.org/2019/10/ash-...
Determining your risk of infection - blood tests
You might like to track your neutrophil and immunoglobulin blood test counts or during treatment, your lymphocyte counts, using a spreadsheet template:
healthunlocked.com/cllsuppo...
This reference explains the purpose of different blood tests:
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Protecting yourself against infections when neutropenic
Many CLL treatments cause low neutrophil counts and it can also develop when you are treatment naïve healthunlocked.com/cllsuppo...
Neutrophils normally make up about two thirds of our white blood cells and protect us from bacterial, fungal and viral 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 (Granix, 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.
Check absolute neutrophil counts, not percentages. This is why: healthunlocked.com/cllsuppo...
- Low White Blood Cell (Neutrophil) Count Precautions
healthunlocked.com/cllsuppo...
We should also reschedule vaccinations if our neutrophil count is under 0.5
healthunlocked.com/cllsuppo...
- Tips on G-CSF self administration
healthunlocked.com/cllsuppo...
- Safe Eating for Poor Immune Function - Beyond the Neutropenic Diet
Over the last decade or so, cancer nutritionists have increasingly questioned whether classical neutropenic diets are the best option for neutropenic patients. This 2021 research from the University of Cologne, the centre of the German CLL study group validates this concern, determining from a propensity score–matched case-control study that:-
• The benefits of a germ-free diet for neutropenic patients with cancer are scarce.
• Food restrictions may increase malnutrition and gastrointestinal side-effects.
• Standard diets do not increase infectious complications in neutropenic patients.
• Incidence of diarrhoea and nausea can be reduced by standard diets.
• Implementation of standard diets for neutropenic patients with cancer is safe.
ejcancer.com/article/S0959-...
From 2014: healthunlocked.com/cllsuppo...
Adopting a Neutropenic Lifestyle if your are chronically neutropenic healthunlocked.com/cllsuppo...
- Late Onset Neutropenia (LON) after obinutuzumab or rituximab treatment
healthunlocked.com/cllsuppo...
- Sepsis/Febrile Neutropenia/Neutropenic Fever - blood poisoning (This potentially life threatening condition requires URGENT IV antibiotic treatment)
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 your 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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Dr. Erel Joffee, lymphoma specialist with Memorial Sloan Kettering Cancer Center, covers the above in ~4 minutes: youtu.be/ScXCNf_WUZM
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: healthunlocked.com/cllsuppo....
Shingles and why prompt treatment is crucial
healthunlocked.com/cllsuppo....
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Skin Conditions (from Patient Power)
Covers skin cancer, hives, hair loss and texture changes, nail changes and fissuring of fingertips and bruising with BTK inhibitors, (acalabrutinib, ibrutinib, zanubrutinib, etc), skin dryness and neuropathy with venetoclax, scalp changes (folliculitis, tenderness, itch, pain, burning of the scalp), rosacea, bug bites, (bug bite hypersensitivity is seen in about 10% of people with CLL).
healthunlocked.com/cllsuppo...
Urinary Tract Infections (UTIs)
healthunlocked.com/cllsuppo...
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, particularly now that new CLL treatments mean that we are living longer. See for example Impact of chronic lymphocytic leukaemia on melanoma outcomes: A retrospective case-control study onlinelibrary.wiley.com/doi...
"A total of 56 patients with melanoma with CLL were matched 1:1 to patients without CLL for age, date of diagnosis, gender and melanoma tumour, node, metastasis (TNM) stage. Multivariate analysis found CLL was associated with significantly worse melanoma-specific mortality (hazard ratio [HR] 2.46, 95% confidence interval [CI] 1.27–4.74, p = 0.007) and recurrence (HR 3.44, 95% CI 1.79–6.63, p < 0.001). Patients with CLL had poor immunotherapy tolerance and prior CLL treatment was not associated with melanoma outcomes."
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: cllsociety.org/2016/03/ct-s...
Ibrutinib (and other 'brutinib's') Bleeding Risk in Patients With CLL Receiving Mohs Surgery
Surgical treatment of (skin) cancers can be complicated not only because of potential underlying thrombocytopenia, which occurs in about 5% of untreated CLL patients, but also because of the increased risk for bleeding that is associated with the use of the Bruton tyrosine kinase inhibitor.
...those treated with ibrutinib had the highest rates of complications among all of the patients (40.6%), with all of their complications involving bleeding-related events. (This is why standard advice is to stop taking ibrutinib for at least 3 to 7 days pre- and post-surgery.)
medscape.com/viewarticle/97...
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 a higher incidence more common with specific prognostic markers.
Biology and Treatment Options (March 2022) healthunlocked.com/cllsuppo...
Overview of current treatment options (March 2022)
healthunlocked.com/cllsuppo...
cllsociety.org/2019/06/ash-...
healthunlocked.com/cllsuppo...
Finally, the Human Immunome Project humanimmunomeproject.org
has been established on the basis that decoding the immune system is the real key to individualised medicine.
Last updated 3rd November 2024
Neil
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