With a CLL diagnosis, knowing more about your ... - CLL Support

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With a CLL diagnosis, knowing more about your immune system could save your life!

AussieNeil
AussieNeilAdministrator

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

medium.com/@amcarter/i-had-...

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

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The Human Immune System (A Graphic)

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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

youtu.be/LSYED-7riNY

What do healthy white blood cells do?

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Great animation illustrating how our immune system works

youtu.be/AucZlvEv29Y

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)

Dr. Neil Kay (Mayo Clinic), Immune function in CLL: What is wrong and why?

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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 smithsonianmag.com/smart-ne... 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.

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healthunlocked.com/cllsuppo... (specifically Ibrutinib)

Shingles and why prompt treatment is crucial

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Boosting your immune system - Vaccinations

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- An example of why it's important. Opportunistic infections take advantage of our weakened immune systems, with pneumonia a potential killer

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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/intra...

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More member experiences of IVIG and subcutaneous IgG are shared here

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Boosting your immune system - Exercise!

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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:

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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. 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 (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.

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Low White Blood Cell (Neutrophil) Count Precautions

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Safe Eating for Poor Immune Function - Beyond the Neutropenic Diet

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Why we should follow the neutropenic diet post chemotherapy treatment

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Dental Work Prophylactics

Make certain whether you need them and you have what's right for you

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Adopting a Neutropenic Lifestyle if your are chronically neutropenic

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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!

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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: healthunlocked.com/cllsuppo....

Measuring how compromised your immune system is by CLL - blood tests

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Urinary Tract Infections (UTIs)

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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/2019/06/ash-...

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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.

This is an unlocked post

Neil

15 Replies
oldestnewest

Wow, Neil this is awesome. Great work!!!

🤧💉👍🍻

Jeff

AussieNeil
AussieNeilAdministrator in reply to Justasheet1

It's a compilation of previous good posts on this very important topic, so your thanks are for many. I've just compiled it for a pinned post :) .

Thank you so so much for compiling all of these. There is so much to learn and understand about CLL/SLL.

Blessings to you.

Thank you Neil.

Colettex

Thanks Neil. Great to have it all together.

Sue

mrsjsmith
mrsjsmith in reply to Wroxham

Cheery bedtime reading ! 🤔

Wroxham
Wroxham in reply to mrsjsmith

I'm too fatigued for bedtime reading

Colette!!😓

mrsjsmith
mrsjsmith in reply to Wroxham

Me too ! Fall asleep with the lights on and then have to get up at 3am to turn them off. But I always think I am going to read at least a chapter a night 🤔

Video's like the response animation are great. I always feel like a Phd for ten minutes after watching one. Whereas after reading a scholarly publication, I feel a bit jerky, like just before a final exam.

Lot's of good reading. Thank you for the complication.

JM

Great information.....thank you Neil

I am constantly amazed at how much useful current content is found on this site. This is so well organized!

So comprehensive , always impressed with your postings

Thank you, Neil - this is great!!

Brilliant post this, full of useful information. Is it pinned?

AussieNeil
AussieNeilAdministrator in reply to bennevisplace

Yes. :) More pinned posts here: healthunlocked.com/cllsuppo...

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