CLL - a Cancer of the Immune System

[AussieNeil]

By understanding how CLL impacts our bodies and taking the necessary precautions, we can greatly improve our chances of maintaining or even improving our quality of life.

CLL is well described as a cancer of the immune system, with our immunity impacted in multiple ways from the growing numbers of clonal B-lymphocytes. Not only do these lymphocytes perform their immune function poorly if at all, they also damp down T-cell activity to protect themselves and don't progress into plasma cells which in healthy people produce antibodies/immunoglobulins. (This T-cell interference is why vaccines don't work that well for us and why we are more susceptible to secondary cancers.) CLL cells also inhibit plasma cells, even inducing apoptosis in them, further reducing immunoglobulin production: ncbi.nlm.nih.gov/pubmed/110... Further, as the lymphocytes proliferate, they crowd the bone marrow, spleen, lymph nodes, etc, reducing the body's ability to replace our various blood cell lines as needed and sometimes triggering auto-immune problems. So is it any wonder that infections become more frequent and last longer as CLL progresses? Infections are the major cause of morbidity and mortality contributing to 25% to 50% of deaths*.

I was diagnosed with SLL/CLL stage IV, or "High Risk" nearly 4 years ago, with reduced immunity becoming a problem before my white blood cell count began increasing out of the normal range. For my first year post diagnosis, I was constantly fighting infections, with regular sore throats and raised temperatures and the associated additional fatigue. I had to to learn defensive hygiene procedures to minimise my risk of exposure to new infections and improve my quality of life.

If you are in the early stages of CLL, then this article may not be all that relevant to you - yet. About a third of us never need treatment. Due to the vagaries of CLL, it may be that you'll need treatment due to falling platelet or red blood cell counts, but it is highly likely that infections will become more of an issue for you as time passes. Make sure you get your immunity levels checked (simple blood test to check neutrophil and immunoglobulin levels) if you suspect you are getting infections more frequently and/or infections are taking you longer to overcome.

I quickly found out that people are generally quite blasé about contagion. Friends would drop around and after a few hours casually mention that they weren't well last week, but were fine now. That didn't stop me from succumbing to what they'd had as they were obviously still contagious. Unfortunately, it is very difficult to know when anyone is contagious; you can be contagious without symptoms before and after getting ill. In short, it is simpler to just take suitable precautions when you are in contact with anyone, i.e. keep your distance and wash your hands frequently.

When I worked in clean room manufacturing environments, I learnt that you don't need to cough or sneeze to spread contamination. Just talking normally generates a fine spray of tiny droplets. (Prove it to yourself - shine a bright torch below your mouth in a dark room while talking.) Keeping at least a metre away from someone dramatically minimises the risk of an infection being transferred.

Other tips I've picked up:

- Frequently wash your hands and avoid touching your eyes, nose or mouth.

- Don't take a "She'll be right" attitude with respiratory infections; secondary infections can quickly develop and become life threatening

- Make sure you have a GP that appreciates you have a developing immune deficiency and WILL see you promptly when needed

- Do not ignore high body temperatures; seek prompt medical attention:

- If you are severely neutropenic (ANC< 0.5) and you have a high temperature (over 38.4C/101°F) or low temperature (36C/96.8°F), get medical treatment urgently e.g. go to Emergency. Without treatment, you could be dead within hours from febrile neutropenia/neutropenic sepsis. Any high (and low!) temperature should be treated seriously, particularly if you are having treatment or have been treated with a CD20 monoclonal antibody such as Rituximab/Rituxan/Mabthera, Obinutuzumab/Gazyva or Ofatumumab/Arzerra within the last year, where you may be experiencing Late Onset Neutropenia healthunlocked.com/cllsuppo... and susceptible to neutropenic sepsis. See Sepsis... when infection overwhelms, for more on this very important issue: healthunlocked.com/cllsuppo...

- Make sure your non-live vaccinations are up to date. Live vaccinations are NOT recommended.

- Encourage others around you to have vaccinations. Herd protection will then reduce your risk of exposure.

- Avoid crowds, particularly in closed environments and especially during the flu season.

- Move away from coughers/sneezers pronto!

- Wear protection (masks in waiting rooms and when gardening, gloves, etc)

- Promptly clean and protect any cuts and scratches

- Make sure your Vitamin D level is in the normal range

- Be particularly careful to minimise your risk of getting fungal infections. They can be extremely difficult to eradicate.

- Keep an eye on your neutrophil (segs or granulocyte) levels and start a Neutrophenic diet if they drop below 0.5 - see healthunlocked.com/cllsuppo...

- If your neutrophils are tending down towards 0.5, you should have them checked more frequently. We all harbour bugs and generally our immune system can keep them under control. When our neutrophils and antibodies drop too low, these bugs can quickly get out of control.

- Get (or keep) fit

Update Sep 2016: I've been on Wait and Watch for over 7 years and started IVIG transfusions this year. By following the above points, I increased my number of well days and I suspect I've slowed the increase in my lymphocyte count. Gone are the days when a cold took a week to get over with medicine and 7 days without, but I've regained much of my quality of life.

My thanks to Nick York for previewing my blog and suggesting some good references.

References:

Explainer: what is the immune system and how does CLL affect it? healthunlocked.com/cllsuppo...

*Infection Risk Definition for CLL Patients; Cancer. 2006 Sep 1;107(5):1023-33: ncbi.nlm.nih.gov/pubmed/168...

The paper notes: 'Infections are a major factor in the clinical course of chronic lymphocytic leukemia (CLL) and account for 30% to 50% of all deaths.'

Chaya Venkat reviews the above paper and provides her usual high standard editorial, providing many excellent tips, opening with 'CLL is a cancer of the immune system that is supposed to protect us from infections. It follows from this that people with CLL have less than effective immune defenses, are therefore more likely to contract infections and, once infected, are more likely to die from them. Infections are the single biggest killer of CLL patients.' : clltopics.net/Complications...

Plus check out Chaya's references and search for infections on this site.

Infectious Complications of Chronic Lymphocytic Leukemia - Punit D. Wadhwa and Vicki A. Morrison: ncbi.nlm.nih.gov/pubmed/166...

cllsupport.org.uk/infection...

The immunodeficiency of CLL - Terry Hamblin: mutated-unmuated.blogspot.c...

Perturbation of the normal immune system in patients with CLL, by Francesco Forconi and Paul Moss

ashpublications.org/blood/a...

Infection Preventative Strategies: How Does CLL Impact the Immune System?

patientpower.info/video/inf...

How to help yourself: cllsupport.org.uk/cll-sll/s...

Photo: Leukaemia Foundation 'Light the Night' walk

Last updated 23 Nov 2020

[poing]

Rather than encouraging others around you to have vaccinations galore, I would encourage them to wash their hands and practice good hygiene in your house.

The flu vaccine, for example, is largely ineffective and does have /very/ serious consequences for a tiny minority (but even that number is way too high in my view), according to Cochrane systematic reviews.

Washing hands when coming indoors from is a great way to keep new and unusual germs from entering the home, and is something that I had not appreciated until recently. Getting other people to do the same when entering your home could make a significant difference, and seems to be totally without risk to anyone.

[HAIRBEAR_UK Founder Admin]

Neil I agree it is a very useful blog. Like all things we learn to strike a balance in time and begin to get to know our bodies too. Although we may not know just how damaged our immune system is at any one time we will recognise if we are experiencing more infection and reaction. If we are we should mention this to the Doc. NewDawn I was accused of being like Howard Hughes before CLL, It must have been in preparation for it. LOL and I thought it was OCD ( :. I don’t seem to being bothered much by infection of late? Is it because of good hygiene and vit D etc. Or am I due one?

Hi Poing thanks for your observations and providing your thoughts on flu vaccination, I enjoyed the thread you started on CLL and vaccinations cllsupport.healthunlocked.c... and understand your concerns about the flu vaccination .. But am thankful that this year those with a healthy immune system under my roof have chosen to vaccinate themselves to provide a level of protection against flu entering the home, two different teenager’s schools and a regional care community is a large catchment. CLL patients probably get little if any self-protection from their own vaccination as we may not be able to mount a response but we are still advised to get vaccinated as are those under the same roof. “herd immunity “ does provide us a level of additional protection. You can’t stop loving your kids, but they now don’t kiss me when they’ve a runny nose ( :

This is not an easy time of the year in the UK for CLL patients as so many opportunistic seasonal pathogens are at large in the community. Having to visit hospitals and clinics is particularly scary at the moment with the very contagious winter vomiting bug having taken hold in such a big way and it is transmitted through many vectors as is influenza. (I’m in for my consult tomorrow), I was in Christmas Eve at another but thankfully just received a Christmas cold for the pleasure,. I drive in my own hermetically sealed bubble so don’t run the gauntlet in the soup of recycled air on the train or unventilated bus. But how safe do you feel in the waiting room when you have to wait for hours?

As a CLL patient I understand that employing strategies and good hygiene routines into daily life will prevent infection. But we cannot remove all risk. How significant is the risk of complication from receiving the correct flu vaccination versus the risk of giving or receiving a complication from contracting an influenza infection? This data I would be interested in.

How do we keep a healthy and active social life and stay healthy in body and mind?Do people who do not have CLL really understand the fear that being potentially at greater risk of contracting infectious complications causes the sufferer? How conditions not normally a problem for those with healthy immune systems can create havoc and misery and serious risk to a CLL person ? Do all visitors wash their hands behind closed doors? Should you point them to the sink when they come in the door? Do you ask them to fill in a questionnaire with clean hands before they can cross the threashold? It’s no wonder that many feel further isolated by the disease.

So glad we can all meet up and keep in-touch on-line ( :

Nick

[AussieNeil Partner Administrator in reply to HAIRBEAR_UK]

Nick,

I initially wrote up a 1 page precis about CLL that I'd hand to regular visitors, emphasising the immunity issues. When that didn't work, my family supported me in restricting access to our home to only those we could trust. Other visitors were entertained outside, with a bottle of alcohol based hand wash prominent on the table where we'd sit. If these less trusted guests needed to use the toilet, we'd wash down taps (hoping they'd been used), doors and door handles. That dramatically reduced the number of infections. These precautions might be inconvenient, but a few minutes can save months of getting over illnesses and perhaps even your life.

I wear a mask during appointments with my optometrist, explaining why. Haircuts are more difficult, but I come back in a few weeks if the hairdresser hasn't been well.

Dental appointments are easy - dental staff here have been wearing masks regularly for ages. I try to schedule them just after a blood tests to confirm my immunity is acceptable and take a prophylactic antibiotic prescribed by my haematologist half an hour before my appointment.

You are fortunate in being able to avoid public transport. At a Leukaemia Foundation meeting here, a haematologist said that leukaemia patients with low immunity travelling on public transport were likely to get an infection if the journey was longer than an hour!

Neil

PS Newdawn, I've wondered if NASA would accept me as an astronaut for the Mars mission - no cross-infection problems on that trip!

[Newdawn Administrator]

I'm wondering if I can pick up a nearly new spacesuit cheap on EBay! Lol!

Newdawn x

[Cllcanada Top Poster CURE Hero]

Nice post Neil...lots of good stuff...

A couple of points, perhaps...

ALL Cll patients should have their B12 and B9 levels checked and monitored by their GPs, and please have HEP B and C panel run, prior to any CD20 monoclonal...many doctors are missing this... mine did.

It is important to understand there is a 'great divide' in the CLL immunity story called TREATMENT.

This ratchets up immune complications exponentially...as the B lymphocytes are obliterated, taking IgA and IgM levels south, and the CD4+ T cells drop to a level of an AIDs patient... things get very interesting... viral reactivations...

If you had a CD20 monoclonal then Hep B may be waiting to come out to play, along with, my very close personal friend Zoster (shingles), the herpes twins, dumb and dumber...oh sorry... EBV and CMV... and a host of other notables, HPV(warts), etc. rectivations ranging from the annoying to the rare but frequently terminal ...JVC and progressive multifocal leukoencephalopathy (PML).

Then, add in opportunistic infections like PCP, hospital acquired MRSA, c.difficile, e.coli and the new and very notable Carbapenem-Resistant Enterobacteriaceae, or CRE...

So...we can live like Sienfeld's 'Bubble Boy' or we can live our lives...

m.youtube.com/#/watch?v=_SU...

On a practical note...always close the lid of a toilet before you flush it...toilets can 'mist'' an entire bathroom with e.coli... up to 14 feet away... for the American Standard toilet.

Interestingly...there are no lids in hospital/public toilets ...what is with that? No wonder the places are filthy!

~Chris

[jibs60 in reply to Cllcanada]

Thanks for this really useful information Chris (and Neil and Nick) - although I now find myself singing "faecal rain" in my head to the tune of Prince's Purple Rain...

Whilst on the subject of infection/public places, I agree with the public transport issue. I had a fabulous holiday in Turkey this summer, but ended up with a virulent case of sinusitis, lasting about three weeks after the Easyjet flight home (they turn round those budget flights in about half an hour - they just land, dump the arriving passengers and their luggage, take on more provisions, and stuff the departing luggage into the hold. You can watch the whole process from arrival to embarkation whilst sat in the departure lounge so you can imagine the level of cleaning that gets done in the cabin...)

On another related issues, does anyone have any experience of public swimming pools since diagnosis? I have always been a keen swimmer, and love saunas and steam rooms. However, I now seem to end up with a range of minor irritations following public swimming/sauna experiences - from dermatitis under my eyes (?from goggle/chlorine combo), to mild sinusitis, sneezing, or a full-blown cold. I really don't want to give up pool swimming and saunas unless I have to...anyone else here had any experiences/got any tips to stay healthy in the pool?

Jules

[poing in reply to jibs60]

Hi Jules, I run a small swimming pool, and I have a tip If you can smell the chlorine strongly, then stay away from the pool. A strong chlorine smell is actually caused by too little chlorine in the water, not too much, and is a sign of a badly kept pool. The chlorine partially reacts with organic matter, creating chloramines that smell bad and cause skin irritation. In a well looked after pool, the chlorine will completely react until it forms chloride (salt), turning organics into nitrogen and carbon dioxide. The better pools now use ozone or UV as additional sanitation measures. I would stay away from jacussis, they are much harder to keep sanitary, the hotter water encourages germs to breed faster, and the small volume of water has a much lower reserve of chlorine and so it gets used up quickly. Hope this helps.

[HAIRBEAR_UK Founder Admin]

Never realised how dangerous trivial pursuits could be

Great clip!! A bad case of moops nearly got the bubble boy LOL

[Cllcanada Top Poster CURE Hero]

Ah...Trivial Pursuit...blame Canada!

[Marisa]

Why have my B12 and B9 levels monitored by the GP? am off to see him next week, so would appreciate a non-technical reply!

[Cllcanada Top Poster CURE Hero]

Simple bloodtest... CLL can mask some problems with B12 uptake from food... B9 is folic acid and works with B12...

Vitamin B12 deficiency can potentially cause severe and irreversible damage, especially to the brain and nervous system. At levels only slightly lower than normal, a range of symptoms such as fatigue, depression, and poor memory may be experienced.[1]

Vitamin B12 deficiency can also cause symptoms of mania and psychosis.[26][27] Vitamin B12 deficiency can be caused by the metabolic disorder pernicious anemia.

en.wikipedia.org/wiki/Vitam...

en.wikipedia.org/wiki/Perni...

In my case and reported by other CLL patients...fatigue, depression and anemia were actually caused by poor B12 uptake from food...a single injection every month has resolved anemia and depression for me, alhough the fatigue remains.

Doctors sometimes think these problems are CLL related, when infact there can be an underlying cause...

This may not be a problem at all but, it is worth checking..

[poing in reply to Cllcanada]

CLLCanada, I'm curious, if you don't mind me asking, what were your B12 levels then and now? I believe that various forms of leukaemia can cause elevated serum B12... and my mother's B12 reading is over the top of the range (my mother has CLL). So, I'm wondering if such readings are valid when they come up really high, and how you could assess true B12 status in a person where the reading was affected by CLL...

[Cllcanada Top Poster CURE Hero]

I had no B12 uptake/absorbtion due to poor human intrinsic factor ...now with an injection I vary from normal to low normal...whatever that is. I don't get involved in the numbers...that's my doctor's job!

As to your mother I can't comment, this is something you need to direct to her doctors.

[poing in reply to Cllcanada]

i wish I didn't need to get involved in the numbers... but doctors don't know or recall everything and some just don't listen or only hear what they expect to hear. A couple of years ago, I felt rather unwell, and I didn't start to get well personally until I started looking at the numbers and all the medical guidelines too.

[Cllcanada Top Poster CURE Hero]

Perhaps I'm spoiled... in BC, Canada we are fortunate to have an integrated medical records system, so ALL my doctors, get all my records, all the notes and all tests results...

Everyone is on the same page...4 doctors ...8 eyes... less chance of things falling through the cracks, and I often have two doctors, interpret test like CTScans, MUGAscans, MRIs etc... built in second and third opinions...

Interestingly the basic interpretations of tests don't vary much, but the focus often changes, based on the doctor's specialty... quite interesting...

[poing in reply to Cllcanada]

Oh we have integrated health records too. They can pull up all my test results at the hospital or at the local surgery. That's not the issue. The problem is that doctors act sa though you go from completely well to completely unwell when you meet the edge of a range, so being even a smidgeon inside the range means you must be fine and it's all in your head (sigh).

[evanz]

An informative read Neil. Do I understand you have SLL? I too have SLL Stage IV.

[AussieNeil Partner Administrator in reply to evanz]

I now fall into the CLL definition as my ALC climbed over 5 a while back. It is much more common to be diagnosed at a later stage with SLL than CLL as SLL isn't detectable in a blood test and other symptoms may be ignored.

[SAMBS]

Neil mentions contagion, so I'd like to add to that a little. I found that every time I flew 2 or 4 times a year, within 3/4 days I'd develop a really dry and sore throat and usually end up with a cough and or cold. I thought about things then decided it had to come from the air conditioning on the plane. I had friends who said they had similiar happen to them when flying.

So the next time I flew I decided to take strepsils in my bag. I had usually sucked a sweet around take-off landing times so that the swallowing of the juices helped stop the 'air pressurisation in my ears. I also always made sure the air conditioning switch above my head in my seat was off.

The one thing I couldn't do though was persuade my husband not to have the air-con on the car. His comfort came before any health considerations. I was diagnosed with MDS in 2011 here in France before the BI Mar last year. so its hot v hot in summer, but it helps with the arthritis. Well we can't win them all I guess.

Going back to the flying - I had found a way to stop the sore throats with sucking the antibacterial lozenges and no air conditioning blasting at me. Every time someone said they were flying somewhere I then suggested they do the same. Most did with the same results as me. Reduction in number of sore throats after flying. I know its not scientific research, but if it works why not?