Chronic lymphocytic leukaemia (CLL) - one man's journey (Part 4)

Part three of the blog took me from my initial visit to hospital through blood transfusions to keep my condition stable while the consultants worked out a diagnosis and a treatment. the treatment started in May 2021.

You hear a lot about the NHS; some good some bad. My experience at GRH and the EJU has been all good and I’ve been treated with compassion and care and where appropriate a little bit of humour. In the two weeks in the run up to the start of treatment I’d said I was a bit apprehensive but keen to make a start. The start came early in the morning on 20th May.

As I said last time I’m on a combined treatment of Obinutuzumab and Venetoclax, and the idea is to introduce the Obinutuzumab and then start the Venetoclax three weeks later. There are side effects and you need to introduce these things gradually and check progress as you go.

Once in the EJU there was probably an hour of pre-meds by IV and taken orally before I could start on the Obinutuzumab drip. The dose on the first day is small but the nurses pressed home the importance of letting them know immediately if I did not feel at all well. This is backed up with regular checks of temperature, blood pressure and pulse as you go through the day. The drug is provided over 4 hours with 2 hours of observations so it’s a long day.

Another patient on the unit did not feel well and I saw immediately how seriously the doctors and nurses responded in this situation. For my part I had a slight wobble about 30 mins in with my first dose of Obinutuzumab; I guess you’d say I felt nauseous but it may just have been my body saying “hey this feels different!”

Because I didn’t feel quite right I put off having lunch; that was possibly a mistake. I also think I didn’t drink enough water on the first day. One thing you do get adept at is wheeling your drip to the toilet. As I said you’re hooked up that first day for about eight hours so you have little choice, although you do come to realise that although you say you’re left handed it’s surprising what you use your right hand for as well!

But I digress; I did my four hours and then the very last set of observations showed I had a high temperature. I actually felt ok, so I hadn’t let them down by not telling them I was unwell. The nurses were clearly concerned and started to put appropriate action and monitoring in place. It certainly focuses your mind when they wheel that oxygen cylinder into view.  

I was beginning to think that I would be spending a night on a ward when the consultant came to the unit and advised the team that a high temperature was not unusual with Obinutuzumab. He knew I was coming in the next day and I always knew that if I was ill in the night I could 'phone their help line. So another night in hospital was spared although I did get a course of anti-biotics for the next week.

One nice moment in the day was seeing a chap complete his final lot of treatment which was a nice contrast with me starting my first day. We applauded him out the building and there was a lot of cries of "we hope we never see you again" in the nicest possible way.

Someone stayed up late for Eurovision
©Harveywetdog

It had been a tough and busy day for the team and I apologised to one of the nurses for causing them concern so near the end of the shift. They told me I had nearly been "the final straw that broke the camel's back"; I said I was thinking more of "the icing on the cake"; they gave me that! 

After what wasn't a brilliant Day 1 on Thursday I decided I had to make sure I ate better on Friday and also make sure I drank more water, both of which I managed to do. Friday was a crazy busy day on the unit with patients constantly coming in throughout the day for treatment so I was glad my second dose of Obinutuzumab went smoothly. The rate/hour starts at twice the Day 1 rate and is ramped up through the day which takes the staff's time as they adjust and check the rate on the pump as well as checking my condition for any reaction to the drug. In the course of the two days I had received the equivalent  of the dose I will receive in each Cycles 2 to 6 although I am due to receive three times that amount in Cycle 1. 

I'm pleased to say I left the EJU in a much better frame of mind Friday evening my body having reacted well (or not reacted at all) to my second day of treatment. I felt really well on Saturday and had a pretty normal sort of day walking the dogs, helping with the horses and cutting the grass. Having said that I probably over did it because Sunday I felt I had less get up and go; but then again the weather was miserable and I knew I was in need of another transfusion to get my red blood cell count up again.

Monday I was into the EJU for a blood test, Tuesday was blood transfusion day and I'm now up to date with my blog and ready for Cycle 1 Day 8 and another dose of Obinutuzumab on Thursday. Hopefully this will be followed up with a trip to Prestige Equestrian for their Winter Regional on Friday; fingers crossed! 

Life goes on!

Footnote on costings:

• A 112-pack of 100-mg Venetoclax tablets costs £4,789.47 (excluding VAT; 2020). The company has a commercial arrangement. This makes Venetoclax available to the NHS with a discount.
• The price of Obinutuzumab is £3,312 per 1,000-mg vial (excluding VAT; 2020). Roche has a commercial arrangement. This makes Obinutuzumab available to the NHS with a discount.
• The size of the discount is commercial in confidence. I not sure what the full cost of my treatment is but I am extremely grateful whatever it is.

In part five we will discuss completing my Obinutuzumab Cycle 1 treatment and report on the start of my Venetoclax treatment before looking forward to Cycle 2.