With a CLL diagnosis, knowing more ab... - CLL Support Assoc...

CLL Support Association
12,994 members20,189 posts

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

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

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...

What do healthy white blood cells do?

healthunlocked.com/cllsuppo...

Great animation illustrating how our immune system works

CLL - a Cancer of the Immune System

healthunlocked.com/cllsuppo...

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...

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 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.

healthunlocked.com/cllsuppo...

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,

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...

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 paricularly 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...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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

14 Replies
oldestnewest

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

🤧💉👍🍻

Jeff

7 likes
Reply

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 :) .

7 likes
Reply

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

Blessings to you.

4 likes
Reply

Thank you Neil.

Colettex

1 like
Reply

Thanks Neil. Great to have it all together.

Sue

2 likes
Reply

Cheery bedtime reading ! 🤔

Reply

I'm too fatigued for bedtime reading

Colette!!😓

Reply

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 🤔

1 like
Reply

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

3 likes
Reply

Great information.....thank you Neil

2 likes
Reply

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

5 likes
Reply

So comprehensive , always impressed with your postings

2 likes
Reply

Thank you, Neil - this is great!!

1 like
Reply

You may also like...