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.) 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.
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.org/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...
The immunodeficiency of CLL - Terry Hamblin: mutated-unmuated.blogspot.c...
How to help yourself: cllsupport.org.uk/cll-sll/s...
Photo: Leukaemia Foundation 'Light the Night' walk