Lately, when people ask me “how are you?” I have to choose between being polite and being accurate. Most people get the polite answer “I’ve been better”. It turns out I may have been too gentle.
CLL is a cancer of the white blood cells, specifically the B-cell lymphocytes. There are many other kinds of white cells, and this blog looks at neutrophils, the most abundant type of white blood cells that form an essential part of the immune system.
Low neutrophil counts are termed neutropenia. This can be caused by a whole range of things, including some kinds of leukaemia, and it can also be a side-effect of chemotherapy. Neutropenia makes you highly susceptible to infections. It can also make you very tired. It comes in several graduations: none, “slight”, “marked” and “profound”.
During my first tilt with chemotherapy in 2010, my neutrophil count dropped as expected, and while I was at some risk of infection, my neutropenia was never at “profound” levels. This permitted me to keep a regular chemotherapy schedule, and to get out and about, provided I was reasonably careful. I was even able to teach karate, though not during treatment weeks.
In 2011 and 2012 I had several infections that required hospitalisation. Several times my neutrophil counts dropped to problematic levels, and eventually to “profound” neutropenia. In hindsight, it was probably the leukaemia messing with my immune system that caused the infections, rather than the infections accelerating the pace of the leukaemia.
It is important to understand that, unlike red cells and platelets, neutrophils have a cell nucleus capable of manufacturing proteins, and actively go looking for trouble, and to kill (eat) foreign cells and viruses. They live for 3 to 5 days. If your neutrophils and my neutrophils were stirred together in a petri dish, they would immediately try to kill each other, even if our blood types matched. For this reason, it is not possible to have a neutrophil transfusion. Sometimes, you can have an auto-immune response where your neutrophils get it wrong, and attack their own host, and this can cause numerous problems. The oncologist suspects that may be a contributing cause of my low platelet counts.
It is possible to “boost” a compromised immune system using intravenous immunoglobulin therapy (IVIg). This is a highly refined blood product that contains passive immune proteins, but no active white cells. Prescribing rules for this treatment are very restrictive. I am due for the last of my 6 doses shortly, and it is questionable (without another major infection and hospitalisation) whether I will be getting any more. (Update: probably will.)
Lack of an immune system means that I have to be careful with large groups of people, because the chance of inhaling a pathogen, or getting a pathogen on my skin from a surface, are vastly increased. This means that I avoid shopping centres, picture theatres, lecture theatres, commuting in trains, and anywhere I have to share air conditioning with zillions of people (like office blocks in the city).
There are times you may see me at a group function (karate springs to mind) where I am wearing a mask. This is at best a short-term measure. After the mask becomes damp (less than 20 minutes) it is useless. I usually have a stash in my pocket. They are also hot and close and uncomfortable and no-one can see you smile. I also tend to carry hand sanitising gel. If I clean my hands after greeting you, it is about me, not an insult to you.
My neutrophil levels are now so low that the noise inherent in the blood test exceeds the actual neutrolphil count. Effectively, my neutrophil count is zero. There have been times recently where the test results have a comment: “0.00, none observed in sample”.
For this tilt at chemotherapy in 2012, my neutrophils are so low that the oncologist must change the treatment schedule to accommodate my bone marrow’s poor levels of neutrolphil production. At some point, we have the hard choice: no chemotherapy will kill me, but to have chemotherapy with profound neutropenia may still kill me. Such a decision point looms this week. (Update: next week.)
It is amazing how fast things move when you go to the hospital, and tell the triage nurse that you are “neutropenic and febrile”. (Febrile means “have a fever”.) This is one of a list of things that, if they occur, I am to go to hospital immediately, but without driving myself. I have not yet had a ride in an ambulance, but it could be that one is inevitable. Usually I’m in an ER isolation room within minutes, and processed to an isolation room in a ward within an hour.
The scary scenario is that I contract a severe (really bad) acute (really fast) infection, and it progresses so quickly that intravenous antibiotics cannot halt its progress. In this scenario, systemic infection follows, leading to multiple organ failure and death. I am unlikely to be conscious at the end, but rather delirium and then coma. In reality, this scenario is highly unlikely. Phew!
Last, I’d like to relate an event that was quite memorable. But first, some background. When you are in hospital, the routine is that specialists visit their patients fairly early in the morning (followed around by a trail of goslings in decreasing sizes), before seeing patients in their off-site consulting rooms shortly after. One significant event occurred when the chief haematologist came to my room in the afternoon, to tell me personally that I had profound pancytopenia, a condition where the bone marrow is producing no useful blood cells (no red cells, no white cells, no platelets). Here is the amazing bit: he sat down (the goslings remained standing) and answered my questions until I ran out. Basically, it meant that I needed chemotherapy immediately, and couldn’t, and that maybe my bone marrow was permanently stuffed. He sat down. Hospital demi-gods never sit down. Pro manager tip: give bad news like this: personally and promptly.
Next week I will talk about platelets, what they do and what is going wrong. Next week will also have a larger number of funny bits than this week.
I am confident in my oncologist, and confident the treatment will work. I accept this gift.