Chronic lymphocytic leukaemia (CLL) - one man's journey (Part 5)

My CLL treatment is a mixture of Obinutuzumab by IV for 6 cycles backed up with Venetoclax tablets for 12 cycles. Officially this treatment is not Chemotherapy because my form of CLL does not respond well to Chemotherapy. Both treatments are targeted treatments; in the case of Obinutuzumab the target is the CD20 protein on my B cells with the aim of destroying the cells. The Obinutuzumab treatment is front end loaded with me receiving 3 big doses in the first cycle; this is how I got on with doses two and three.

I was keen for my second big dose of Obinutuzumab to pass without incident. I didn’t get off to the best of starts by managing not to check in correctly (allegedly) so I was missed and ended up going in half an hour late.

It's a lot of water!
©Harveywetdog

There seemed to be a lot less pre-meds for day 8 but I did have to wait 30 mins as I was given paracetamol to keep my temperature under control. The Obinutuzumab rate was increased gradually and the treatment went very smoothly over the 3 hours and 15 minutes I was connected to the drip.

During the afternoon they told me they wanted me to keep on antibiotics as I’m still neutropenic (poor defence against infections). I’m not a keen pill taker but you’ve got to do as the doctor says.

But one big surprise was when the nurse told me they were sending me home with a course of Filgrastim which I have to inject into my stomach every Monday and Thursday in order to treat the neutropenia. I did wonder if this was suitable material for a YouTube video but nobody wants to see a mixture of my hairy tummy and sharp needles do they? Of course I do remember to say "small prick" before I inject myself, just like the professionals. 

Post cannulation I had expected for a blood sample to be taken ready for my next dose of Obinutuzumab but that plan had changed and I was asked to have the test a few days later closer to the treatment day. While I haven’t really got anything better to do at the moment this did mean another trip into Gloucester as I doubted my GP would be able to fit me in at such short notice.

I was also told to expect another transfusion a week later so it looks like they plan to give me blood every two weeks. Of course that requires another blood test and match but luckily I already have an appointment at my GP that week. It just means every day will be a hospital day that week.

I was discussing the benefits of the transfusions with an eventing friend and agreeing they really do pick you up; that’s good because I’m hoping to have a day out at Bicton that weekend. Mind you said friend is planning two circuits of the 4*L course at the event so everything is relevant.

Friday that week saw me at Prestige Equestrian for an hour videoing dressage. It is always good to get out and do something “normal” although I wore my mask and Lymphoma badge. It feels weird being the only person in a mask at these events but if means I can attend then it is worth it. Thank you to Charlotte Dujardin for being at Prestige and giving a much needed boost to my viewing figures.

 

Unfortunately one of the riders later asked me to remove their video which upset me more than I expected; I guess it was a case of "little things" but ultimately I decided it was the right thing to do. I'm also doing a lot of work trying to address YouTube copyright issues but I'll probably blog separately about that. 

I had a long weekend without hospital. I managed to inject my stomach without incident. The bank holiday weekend was hot and Tuesday afternoon I spent on the tractor topping the horse paddocks; I possibly overdid it because the next day I was very tired and even had to have an afternoon nap.

I received confirmation that I had been accepted for Bicton and I also had chance to make my application for the Hartpury events in the summer. My priority is obviously my treatment, but it is nice to have a bit of normality so I will attend a few events this summer if my accreditation is accepted and if I feel well enough. As I'm now in a at risk group I will maintain social distancing if I do venture out.  

That Wednesday was blood test day for my final dose of Obinutuzumab for Cycle 1. It seems strange to think that once Cycle 2 starts I will have received 50% of my dose of Obinutuzumab. And the next day Cycle 1 day 15 Obinutuzumab 3rd dose passed without incident. I sensed they gave me more pre-meds than Day 8, and they also discussed giving me a blood transfusion the same day, but I convinced them I was happy to go another 6 days before receiving more blood.  

You do have to get used to these constantly changing plans. With the Venetoclax there is a strong risk of Tumour Lysis Syndrome (TLS) as a side effect so the dose is built up slowly with a lot of checking by the medical team. I had established a basic plan with my clinical nurse specialist but we hadn't bottomed out when I would physically be given my first pill. The project manager in me insists on "planning the work and working the plan" so it seemed a pretty straight forward question to me. We ended up with another change to the plan as I will now get all seven doses of my week 1 Venetoclax tablets following consultation on day 20 and transfusion on day 21 but no test until day 23.

I also have to drink plenty of water; basically at least 2 litres per day. I've built up to that quantity across my first cycle of treatment so I'm as ready as I ever will be for a 4/5 day hospital week plus the start of my Venetoclax treatment. As long as I can manage the Venetoclax then the next big question will be is my bone marrow starting to repair itself -

wish me luck!

Venetoclax dose rates