Jane has been living with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, since 1982, a long-term condition with a wide range of symptoms, the most common of which being extreme fatigue.
Whilst under the long-term care of a consultant for her ME, Jane would have various blood tests every six months. In 2004, anomalies were found in her white blood cell and lymphocyte counts and she was referred to a local haematologist.
Jane, what was going through your mind at that time?
When I was referred to my haematologist, I immediately thought I might have leukaemia.
I had an appointment with my GP a few days later to discuss these anomalies, but she was pretty sure there was nothing to worry about. Another GP (whom I worked with) also shared the same opinion.
I saw a haematologist a few weeks later and I had blood tests taken following a physical examination. She wasn’t too worried, but there were many possible diagnoses, including possible chronic lymphocytic leukaemia (CLL). It was confirmed my white blood cell and lymphocyte counts had been slightly raised, but not to the extent of when leukaemia might normally be diagnosed.
But, it was confirmed that I did in fact have CLL.
I was told that I might not need treatment for some years other than the potential of taking daily antibiotics if I had repeated infections. If I had to have chemotherapy later down the line it would be through oral tablets, which didn’t sound too bad.
You had been on Watch and Wait for 19 years following your diagnosis and were having blood tests every few months. In December 2020, both you and your consultant first discussed the idea of treatment and what that would look like. Could you tell us what happened next?
Given my white blood cell and lymphocyte counts in December 2020, my consultant and I first began discussing the idea of treatment and what this might mean. We agreed that obinutuzumab and venetoclax would be the best route for me.
I was allowed to choose when I could start treatment, and I knew I wanted to do the first stage over the spring and summer months. I knew I would be more vulnerable to infection, so I picked the warmer months; this meant I could safely see friends in the garden or indoors with all the windows and doors wide open. So with that, on 19th May 2022 I began over 12 cycles of 28 days of obinutuzumab and venetoclax.
I was being treated at the Great Western Hospital in Swindon and I was on the Haematology and Oncology Ward (which was great!) for five days to start the IV infusions.
However, as predicted, I had a bad reaction to the first obinutuzumab infusion which had to be aborted. I then had a rest day followed by another try of the 1/10th dose which I coped with much better thanks to having IV anti-sickness medication. This was then followed by the remaining 9/10th dose the next day.
Other than your initial bad reaction to the infusion, did you have any other side effects?
I found that I didn’t have much of an appetite (which was very unusual for me!) so it just shows how grotty I felt. I was given snack packs so I could graze as and when I fancied, and there were plenty of choices when it came to sandwiches, crisps, fruit bags, yoghurt, juice and biscuits. There was also ice cream available so I had that every day!
After your first infusion, were you expected to stay in the hospital? What were the next steps?
No – I was home after the re-try of my first infusion and I then spent eight weeks doing weekly day therapy visits for the obinutuzumab infusions and then began venetoclax. My dose continued to increase weekly until the final dose of 400mg, which I stayed on until I completed the total 12 cycles.
During the first two weeks of starting venetoclax, I needed blood tests at six and 24 hours after the first increased dose as there is a risk of a condition called tumour lysis syndrome (TLS). When a cancer cell dies, its contents are released into the body which the kidneys absorb. However, when this happens too quickly the kidneys cannot cope, which can lead to chemical imbalances in the blood which can cause problems with the kidneys and heart.
Thankfully, once I was on 100mg of venetoclax my consultant said the risk of TLS had passed. From July to October, infusions were every four weeks which was much more manageable.
Can you share with our readers what a day might look like when going to day therapy?
A typical day-to-day therapy was 10 hours! I would be up just before 6am to be collected at the earliest time of 7:10am, and into the hospital at 8:30am for a blood test. Once a blood test was done, I would normally have a nap until coffee time.
By this time, the blood test results would be back and we would begin infusions: saline, anti-sickness, saline, steroids, saline, obinutuzumab for five hours, and then a final saline.
As I used patient transport, my day was normally a couple of hours longer than those who used their own personal transport. But, I didn’t mind; it was my choice to do it like this.
That definitely is a long day! So let’s talk about today. How has treatment been overall?
According to my consultant, my blood test results so far have been ‘amazing,’ and we are hopeful that the treatment will give me remission.
As I’m writing this in January 2023, I’m now on cycle nine, 400mg of venetoclax a day so I should be done and dusted by the end of April.
I have been extra cautious and have tried to avoid the possibility of infection as much as possible. I tend to just go out for a drive if I need some time away from home and I tend to only go indoors for blood tests or medical appointments.
There was no guarantee that treatment would affect my energy and fatigue levels in a positive way, but both are gradually improving. I now sleep a lot less during the day and I can manage around 30 minutes of gentle physical activity. My friends even tell me how much better I look, which is encouraging!