Early stage CLL and lung infection

Sorry to read of your problems.

It is true that CLL does mostly result in an immune system that is not really working well.

HOWEVER if your numbers are still very low, then normally this is not a problem.

We are all different of course, and so there are no hard and fast rules, just general trends for most CLL patients.

There are some sophisticated tests that can be done on both the CLL and your immune system which would determine how your immune system is functioning.

The CLL tests are for mutated versus unmutated, and a FISH test; then you could be tested for IgM, IgG and IgE.

This kind of testing is rarely done by the NHS in the UK, except in special cases or as part of a research work.

No easy answers I'm afraid, but at least some questions that you can now ask the doctors.

( From a fellow cyclist with CLL, diagnosed back in 2005, and last year started on a new drug that keeps the CLL under control, so that I can get back in the saddle. )

Dick

Thanks for the quick reply Dick. I have been fortunate enough to get all the initial screening tests during my early consultations, and I do have unmutated IgHV, which isn’t ideal. Again though, my consultant wasn’t worried and confident that the meds available now will keep me on the right path if needed. 
There is actually a suspicion of a fungal lung infection from cycling in a slightly damp shed over winter. Here’s hoping it can be sorted soon. Thanks again.:)

Just be aware of fungal lung issues.

Aspergillosis is not something to be messed with.

If in doubt check out Manchester University hospital who specialise in these things.

https://mft.nhs.uk/wythenshawe/services/respiratory-and-allergy/national-aspergillosis-centre/

Dick

I repeat as when one enters a web address this forum delays the entry and send via a manager to check, which can take a while..

Be careful of fungal lung issues, due to aspergillus, which can be nasty.

If in doubt get to Manchester University Hospital who specialise in these matters.

National Aspergillosis Centre
Aspergillosis is the name of a group of conditions caused by a mould called Aspergillus. This family of moulds usually affects the respiratory system (windpipe, sinuses and lungs), but can spread to anywhere in the body in those that are immunocompromised.

Dick

Yes- totally agree. I’ve had tests a few days ago and a bronchoscopy booked for Tuesday, so hoping to get a proper diagnosis soon. Thanks anyway

Hi again Crispin …… sorry to hear about your ongoing infections……. although I have a different type of slow growing blood cancer (Non Hodgkins Lymphoma)…… based on my 24+ years ‘living’ with my blood cancer (and going through various treatments )……. I can certainly say that infections of various types……. especially respiratory have been part of my life…… with some issues like the RSV, Bronchitis, Pneumonia …… being particularly bad and long lasting - It did not help that for the first 12 years of my journey I worked in a demanding teaching position on a full timetable with 20 odd snotty nosed teenagers

I also have asbestosis……. so I have a good relationship with my respiratory consultant…… who is actually a good family friend) and his view is……

Living with an incurable blood cancer (many blood cancers are treatable but incurable) means that our immune system is required to fight 24/7 on two fronts…..

The first front is the 24/7 fight with our blood cancer….. this never stops…… but from time to time can require a good percentage of our immune systems resources ……. to stop our blood cancer progressing.

The other front is the day to day…… like anyone else….. ‘none’ blood cancer related infections that come along…… BUT when our immune system is rather busy on the blood cancer front the bodies ability to deal with infections can be greatly reduced resulting leaving an open back door and this in turn can result in longer than normal periods of infection.