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.
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
The Human Immune System (A Graphic)
How the immune system works (Excellent overview)
White blood cells, the immune response, immunity, immune system disorders
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?
Great animation illustrating how our immune system works
CLL - a Cancer of the Immune System
(Note that the precursor to CLL, Monoclonal B-Lymphocytosis can also impact our immune system)
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... (specifically Ibrutinib)
Boosting your immune system - Vaccinations
- An example of why it's important. Opportunistic infections take advantage of our weakened immune systems, with pneumonia a potential killer
Boosting your immune system - IgG Infusions
Low immunoglobulin counts - IgA, IgG, IgM, (hypogammaglobulinemia) is common in CLL and 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.
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.
Low White Blood Cell (Neutrophil) Count Precautions
Safe Eating for Poor Immune Function - Beyond the Neutropenic Diet
Why we should follow the neutropenic diet post chemotherapy treatment
Dental Work Prophylactics
Make certain whether you need them and you have what's right for you
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!
Measuring how compromised your immune system is by CLL - blood tests
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.
Urinary Tract Infections (UTIs)
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:
Briefly, RT occurs when the usually slow growing CLL/SLL transforms into a more aggressive lymphoma, usually diffuse large B cell lymphoma (DLBCL) and occasionally Hodgkin Lymphoma
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