Chronic lymphocytic leukaemia (CLL) - one man's journey (Part 3)

Part two of the blog saw me rushed to hospital due to a low red blood cell count and finished as I heading home after two nights in the GRH; it was now time to sort out my future.

I’ll admit all the time I’d been in hospital my aim had simply been to get out as quickly as possible; now I had to face reality. I had heard “treated as an outpatient” said a couple of times when I was an inpatient and I felt relaxed about that. I didn’t feel I was in imminent danger and the three transfusions had done me a power of good. But I appreciated they were not a permanent solution and I definitely felt as if my life clock had lost a few minutes.

It was a weekend of soul and internet searching.

The next Monday I’d an appointment booked with my GP which I kept on the basis that the more medical practitioners in the loop the better. I then chased down my first outpatient appointment fearing that any delay in our rural postal service could see me missing it. I was told it was for Thursday and it would be for a consultation. 

One thing you quickly get used to once you have been diagnosed with a blood disorder is having blood taken for testing. I’ve already said I’d been told I had “good veins” but my advice is always to look away when people are either sticking cannulas in your hands or drawing blood from your veins. It seems to work for the horses so why not me?

There's a lot of reading to do.

I was told to arrive early at the Edward Jenner Unit (EJU) at the GRH for my appointment so that my blood test could be completed before I met the consultant and that’s what I did. Since then I’ve got in the habit of going the day before to get my blood tested. It means sitting in the queue and taking my turn but it hasn’t been too bad. 

On my first day in the EJU clinic I met up with Consultant Haematologist Dr Rory McCulloch again. There was a slight moment of missed recognition, because let’s face it we’re all wearing masks and people do look different when you’re talking to them face to face (or mask to mask) rather than in a prone position in a hospital bed. I was told the CT scan hadn’t revealed anything unexpected but that some specific genetic blood testing was required before a full diagnosis could be made, the bone marrow test was still needed and that a further transfusion was required. They always ask you if it’s ok, and I guess you could say no and walk out, but while Dr McCulloch got everything organised I gave myself a good talking to and said let’s get on with it (and accept it’s going to be an expensive stay on the Orchard Car Park).

In fairness extracting the bone marrow sample (from the rear of my right hip) didn’t hurt; there is a sensation of someone screwing a small cheese skewer into your back but there was no associated pain as such. With fluid and solid marrow samples taken then once the associated wound had been dressed and checked it was time to take to my chair and receive another transfusion of blood.

In my consultation with Dr McCulloch he'd told me that his initial diagnosis was Chronic lymphocytic leukaemia (CLL) and that the various tests would help him confirm this and decide on the best course of treatment for me. When I asked “what if I decide to do nothing” I was told that I would then just be reliant on transfusions until I caught something. But on the positive side I was told that at my age and fitness most treatment options were available to me although I could expect a dip in my overall health for the first six months as the drugs took effect. 

You have to remember that there is no cure with this type of disease, but you can use drugs to reduce its effects. When I got home I did my internet searches on the topic and came across one interview where the Doctor was asked "What is the number one question you are asked?" I thought it was going to be “how long have I got?” but no apparently it was “why me?” The answer was “bad luck”; they don’t know what triggers the disease which is why it is not possible to say how it is cured.

Recognising that my second Covid injection was due and still not entirely sure that the first injection hadn’t triggered the reaction I sought assurance that I was safe to have another vaccination. Everybody told me to go ahead as I was now in what was classed as a vulnerable group. I was warned however that because of my condition my vaccination might not be as effective as expected due to interaction with the treatment. I’m keeping track of some U.K. research into this which hopefully will deliver some results in the near future.

In the final week of April I had my second Covid vaccination followed by another blood transfusion later in the week. As I've said the blood transfusions were really helping and so that weekend I allowed myself a short trip out to Cirencester Park. I was very grateful that Musketeer Event Management allowed me to join the media covering the event, say a few socially distanced hellos and spend a couple of hours on the course. I was determined to try the PXW-Z190 out on cross country. There was only one slight hill towards the end of the course and by the time I'd carried the camera and tripod up it in the wind and drizzle I was puffing again. As the rain got heavier I was glad to get back to the Discovery and head off home mission accomplished.

The first week of May saw me at the EJU twice, once for my blood to be taken and once to receive a further transfusion. An appointment was set for the 10th May in Cheltenham to discuss the results of the test and decide on the best course of treatment. As this was clearly a key decision point my wife and I both went together. The hospitals are generally insisting on nobody accompanying you unless really necessary but were accepting on this occasion as social distancing protocols could be maintained.

Again my consultant was able to confirm his initial diagnosis of CLL, in a late stage but still treatable. As my bone marrow was basically not doing its job, I am not suitable for traditional chemotherapy but can be treated with Monoclonal Antibody Therapy which is a modified new form of treatment. This comprises Obinutuzumab by IV for six months and Venetoclax tablets for twelve months. It’s less intensive than chemotherapy so has to run over a longer period. The intention was for me to start on a year long programme within two weeks.

The aim of the treatment is to send the CLL into remission but once they stop the treatment monitoring continues to check my body’s reaction and respond accordingly. For the first ~6 months my immune system is compromised by the treatment so I will still need to shield and maintain social distancing. Hence COVID restrictions will continue for me regardless of what the rest of the country is doing.

One useful source of information in all of this were the letters the consultant was sending back to my GP to keep her informed of my progress, a copy of which was sent to me. These are obviously written very business like and doctor to doctor, but they do provide a useful summary of what you've been told in the consultations. You soon learn to look out for the key words and phrases indicative of both good and bad news.

Following the meeting on the 10th May I had a reasonably quiet week and I was able to visit Prestige Equestrian primarily to video Vincent in his PSG Bronze Winter Area Festival; the weather was not great and so I took my old AX100 to give it a run out in it's rain cover. I videoed a couple of other horses but unfortunately it was not the day for high scores or excellent performances. But I managed to video the class winner and a couple of other tests as well as Vincent before being ordered home by my wife. We were all pleased with Vincent who put in a sterling performance to finish third.

The socially distanced videographer
©Harveywetdog

The week after that I had four hospital appointments. Monday to go through the side effects and sign the consent form, Tuesday for another consultant to take a second opinion as to my suitability for this novel form of treatment and Thursday and Friday for Day 1 and Day 2 of Treatment Cycle 1! One thing I did request and was given was a plan; the appointment letters can appear a bit disparate when they drop into the mail box so I think it is essential to see how it all fits together, especially as there are three main threads to the treatment, transfusion, Obinutuzumab and Venetoclax plus all the blood testing, pre-medication and management of side effects. Although NHS had a developed protocol for the treatment this was a first for GRH.  

The NHS mean business
©Harveywetdog

 

I went through the run-up to Thursday feeling positive especially as the blood transfusions were making me feel quite a lot better and I was definitely in a better place mentally to start the treatment. As I told my colleagues at EDF I'd quickly gone from a situation where I'd been working three days a week with them to one where I was basically visiting the hospital three days a week instead.  

This wasn’t in our retirement plans, they’re definitely on hold for a while!!

In part four we will get up to date with those first two days of treatment and discuss what the future holds.