Leukemia Update

A chart showing James Graham's white cell count over time. Starting at in June 2023, the chart reaches a high of 374.22 in early Jan 2024 before going down to 222.57 in late January 2024

Content warning: cancer, medical treatment (not all of which is positive)

I have absolutely no intention what those of us of a certain age would call “doing a John Diamond“. But it’s been an eventful month so I thought I’d better briefly update the situation.

I started my cancer treatment on 3 January. It did not go well.

The main drug that formed the core part of my treatment plan is a thing called obinutuzumab, which is a therapy drug (technically not chemotheraphy) which targets a protein on my white blood cells which my immune system will then attack and destroy. They are very careful at first about not giving patients a full dosage and monitoring them closely because it is common for patients to have an allergic reaction which can lead to serious side effects. It is administered by a drip over a series of hours and the idea is to carry this out weekly.

It is fair to say that I had an allergic reaction. Within an hour or so of the therapy starting I had a very severe asthma attack, the worst I’d had in 14 years. They tried resuming the treatment two more times that day and one last time on the following day. I had the same reaction each time they resumed the treatment.

It later transpired that I had developed a thrombophlebitis, which is when a blood clot forms in a varicose vein – in this case on my left shin. It isn’t particularly serious, but it turns out that it hurts like hell. I spent a week with it getting increasingly painful and debilitating before I finally managed to get a diagnosis and course of blood thinners to help sort it out.

So that was the first two weeks of my treatment: an abortive attempt at starting a new drug followed by a week or so of intense and debilitating pain. I’ve now been diagnosed with a new drug – zanubrutinib – and I’m happy to report that the second half of this month has been much more plain sailing.

Unlike the previous therapy drug, this one takes the form of four pills that I have to take daily. So far the only negative side effects that I’ve experienced is that taking four large pills every morning (on top of my other medication), is not exactly fun and requires a lot of water.

I’ve only had the results of one blood test so far, but you will be able to see from this graph that the fall so far has been quite dramatic (the space between the red and yellow lines is the normal range my white cell count should be within).

A chart showing James Graham's white cell count over time. Starting at in June 2023, the chart reaches a high of 374.22 in early Jan 2024 before going down to 222.57 in late January 2024

Where do I go from here? I have no idea frankly. Obviously I would like to see that line to continue to go down, but I’m doing my best to mentally prepare myself for the fact that there are bound to be more humps along the road. The plan is still for me to go back on the obinutuzumab at some point, once my white cell count is significantly lower. The graph suggests that might be soon, but you don’t get a trend based on a single result so we wll see. I am of course somewhat trepidatious at the thought of resuming a treatment that gave me four serious asthma attacks in 24 hours.

The most positive thing I can say about the first two months of this experience is that I think I’m more mentally prepared for this journey to take any number of different directions. Before the 3rd of January, I allowed my innate optimism to kid me into thinking I was about to undergo 3-6 months of inconvenient but straightforward treatment. If things do go dramatically south again all of a sudden, I think I’ll be better at handling it than I managed last month.

I’ve heard many people with cancer say that you don’t fight cancer and are merely along for the ride, and now I understand the truth of that.

Anyway, that’s about it really. I had a month of drama but have survived and it looks like I am now making some progress. If that changes significantly I’ll post something new, but I’ll wait until I know exactly what’s going on before doing so.

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