“So it looks like it’s treatment time” was the message I sent to family and close friends following my video consultation with my consultant at the end of February 2021.

Six months earlier we had relocated from the south coast to live in a village six miles east of Leeds. My final phone consultation on leaving my previous hospital had included a discussion about the lymph nodes in my neck, which were increasing in number and size. The feeling was that this could be a factor which might lead me into treatment, even though my blood results were relatively “steady”, considering my CLL diagnosis. I had been on “watch and wait” (or “active monitoring”, “watch and worry”!) since July 2018 and had always taken most notice of my blood results, looking for a the doubling time in my lymphocyte count, but in the end this wasn’t the deciding factor.

I started to become really aware of the effect of these neck nodes, not just because of how they looked (think golf balls) but also because of the pressure they were starting to exert. I had a constant feeling that there was a band pressing around my neck. I was always conscious of the angle at which I held my head so that I didn’t feel uncomfortable, or even slightly faint and sick if I got it wrong. It affected the way I slept. I had started beginners Yoga, which I really enjoyed, but anything which involved head down towards the floor made my neck throb and left me too uncomfortable to feel any benefit. All in all, I felt restricted and worn out with it all.

Fast forward three months to November 2020 and my first face-to face appointment with my excellent new consultant in Leeds. As I walked into the room, even before I’d sat down, the consultant said, “I see you have enlarged lymph nodes in your neck, that could be a reason to start treatment”! He went on to explain that he wanted to do a set of genetic prognostic blood tests and the possible treatment choice might be Obinutuzumab and Venetoclax. Lots more discussion and nine vials of blood later, I came home to start learning more. Me being me, I was determined to be as informed as possible, both by reading and consulting my fabulous online “blood” family to benefit from their knowledge and personal experience.

At this point I need to say a few things….

I’m aware that not everyone feels comfortable sharing their experience in great detail. Some people might not want to know all the details and potential outcomes of treatment. Some feel happier just trusting the experts and not researching too much. For me, I know that I’m always better when I’m informed. I have NO biology background, so some of the amazing cell biology stuff is a bit beyond me, but that doesn’t mean I haven’t studied and devoured any information I can get. It’s just the way I am – in the “forewarned is forearmed” brigade.

The other thing to say is that all this is MY experience. It will not be the same for everyone or perhaps even anyone else. Generally my experience has been a positive one, but treatment responses vary so much and some might not want to add to any anxiety by hearing about someone else’s experience. If that is you then please feel free to not read on!

When I received a copy of the consultant’s letter to my GP, it contained the outcomes of all my genetic prognostic blood tests. Of course this is medical technical language but I researched as much as I could to understand what the results meant. My most significant markers were that I was “11q deleted with ATM gene deletion in 77% of CLL cells” and “IGHV unmutated”. The 11q thing in simplistic terms apparently explained my rapid lymph note growth, while the unmutated status meant that my CLL was deemed to be a little more progressive than had I been “mutated”! How unusual this language is, yet how familiar it has now become between me and my fellow CLL friends.

Christmas came and went, together with another Covid lockdown. I contacted my very helpful GP to ensure I was on the priority list for the vaccine (I wasn’t but should have been!) and managed to get my first vaccination in the first week in February. Towards the end of the month I had a video consultation with my consultant, when he confirmed that he wanted to proceed with treatment using Obinutuzumab and Venetoclax. He explained how these would initially be administered and that the first month or two would be extremely “hospital busy”! The Obinutuzumab would be infusion for six months (weekly for the first month, then monthly) and the Venetoclax would be daily tablets for a year. He said that he would book a CT scan and ECG and that I would have a face-to-face appointment in six weeks to discuss the treatment plan. In his letter to the GP he asked that maybe I could have my second Covid vaccination sooner rather than later in order to receive it before treatment began. Again I cannot fault my GP surgery in that this was duly arranged. This confirmation of treatment starting was a strange time, much like when I was first diagnosed. We had to talk to our grown up kids (God bless group video calls), as well as wider family and friends, explaining what was happening and reassuring them that I was OK. It’s in my nature to make sure that everyone else is OK, however I soon realised that it would be important to learn a bit more self-care too.

The CT scan was a really interesting one. It was booked at a nearby Nightingale hospital which had been set up to treat Covid patients, but in the end had not been needed. As it had been equipped with a scanner, they were able to offer appointments much sooner than might have been possible at the main hospital. The scan would be “with contrast” whereby a solution is injected through an IV line. They requested that it should be a “fasting” scan, so no breakfast. That combined with the fact that it was a really chilly morning meant that my lovely nurse really struggled to find a vein for the line! Thankfully she found one on the second attempt, and suggested that I wear gloves on the way if I needed to do the same again at any time. Good tip.

I have to say that receiving letters for appointments has been a really sobering thing for me. Seeing things in black and white made it so much more real – this was really happening. I remember the morning I received my treatment schedule, outlining the first few dates for infusions. I sat with the letter for a few minutes, had a few tears and let it all sink in. All the research, information, consultations and appointments don’t take into account the emotions and anxieties which go hand-in-hand with cancer treatment. It’s a big deal. I’m a firm believer that all these emotions should be acknowledged and not suppressed. As a Christian I believe that we are designed to be body, mind and spirit. It would be foolish to think that something that affects our body so strongly would not also affect our emotions and thoughts. There have been many tears since (I’ve always cried easily), but that’s OK. They come and go. I move on.

My particular treatment combination has seen really good results in terms of solid remission for several years following. I was actually looking forward to beginning the treatment – doing something that would lead to feeling better, but at the same time I didn’t want to do any of it! It was a strange time of waiting between receiving appointment dates and treatment actually starting. During this time I was hugely grateful for my support network. I spoke a couple of times to one of my two my Clinical Nurse Specialists at the hospital, both of whom were unfailingly encouraging and helpful, never making me feel like my enquiry was too small. What an amazing resource they are. I received words of encouragement and assurances of prayers from family, friends and not least from my online “blood ” family. How special to be able to share the journey with people all over the world who were going through the same experiences. I’ve so appreciated people who “get it”. I was able to talk to people who were going through the same treatment regime, gaining valuable information about the routines and what to expect, as well as helpful tips about how to get through the long infusion days as comfortably as possible.

On a weekly Zoom call we were (and still are) able to update each other, laugh and cry together, celebrate good news as well as sharing in difficult times with love, support and prayers. I cannot say strongly enough how valuable and what a joy this has been and continues to be. Many times I have wondered if I’m simply not up to the Zoom call, but I always leave feeling encouraged, supported and not alone. How unusual it is that joy can be found in what is such a testing time in many ways, nevertheless it’s true. I am convinced that many of the friendships I have made directly through my CLL diagnosis will stand the test of time.

Eventually the day of my pre-treatment assessment arrived. It was slightly unusual in that a consultant appointment which was due to be a few days before had been put back, so I arrived still thinking that there might prove to be a reason why treatment couldn’t go ahead. There were some general checks (height, weight, blood pressure, oxygen levels, temperature etc) as well as swabs for MRSA and a Covid test. Also bloods of course! The appointment was made a little harder by the fact that my nurse, although very pleasant and efficient, had a really strong French accent. I don’t have good hearing anyway, so the combination of hearing aids, mask and accent was not helpful! I approached my consultant appointment a few days later with some apprehension, but all was well. Consent forms were signed and it was all systems go. I went home to pack a rucksack ready for the first infusion of Obinutuzumab the following day.

Arriving at the Day Treatment Unit was one of those times when I was reminded that I have Blood Cancer. It might seem strange to say that, but during the three years since diagnosis, apart from consultant appointments, I was able to do many of the things I had done before. It was only in the couple of months prior to treatment that my lymph nodes had increased notably and I had experienced more fatigue. I quickly realised that the treatment centre catered for every kind of cancer. Some of the patients in the waiting area were obviously well into treatment, some had lost their hair, others were obviously fatigued, but there was a lovely sense of camaraderie and hope. Eventually I was called through, settled into a comfortable recliner chair and asked to soak my hands in hot water in order for the veins to stand out. The cannula was put up and the pre-meds began. These take an hour before the Obinutuzumab is connected and involve saline, steroids and a large dose of antihistamine. Over the last three weeks a pattern has emerged whereby this antihistamine dose immediately leads to me napping for a short while. Apparently I’m not the only one! Then the Obinutuzumab was connected at a very slow rate (just 25mg an hour for four hours on the first day) and I settled back to read and have a snack.

About an hour into the infusion I started to feel flushed in my face and body. I had a great piece of advice from a good friend prior to treatment (and he had messaged that morning to remind me!), which was to mention to the nurses any little thing I was feeling, as soon as it started. We British often don’t like to make a fuss, but this was not the time for a stiff upper lip! I mentioned the flushing feeling to the nurses and they immediately sprang into action, pausing the infusion and checking my temperature, blood pressure and oxygen levels. By this time I was feeling very sick and my chest was quite tight. I was soon hooked up to an ECG by a doctor who had appeared and then visited by my consultant. He suggested that I should be given anti-sickness medication and then the infusion could be restarted at a slower rate. I was initially a bit confused as to why it had taken an hour to react, but soon realised that the IV line itself contains around 16mg of fluid and as the Obinituzumab was started at an extremely low dose, I hadn’t received the actual drug until the end of an hour or so. I managed to send out a few prayer request messages to friends and prayer groups online. I still wasn’t feeling great but the team were excellent and I managed to get through to the end of the day. When I finally got home I fell into bed, knowing I had to be back at hospital at 8am the following day. I slept.

My consultant had warned me that there was a possibility of a reaction on Day 1. Obinutuzumab is a strong drug and I could almost hear my body saying “WHAT IS THAT??!!” Having said that I need to reiterate that many people won’t have a reaction at all. It was scary and unpleasant but it passed. The medical team responded quickly and efficiently, with professionalism and compassion. I remain so impressed by every NHS worker I have come into contact with, in whatever capacity. How blessed we are.

I returned to hospital early the next day, understandably a little anxious about how the day would unfold. Nevertheless I was really conscious of the many prayers and positive thoughts being sent by those who were supporting me through this journey. There were the usual pre-meds and I settled to watch a few episodes of a favourite series which I had downloaded onto my tablet. I’m a bit of an over-thinker, so the distraction of watching something I really enjoy was just what I needed and a great way to pass the time. Highly recommended! I was aware that the dose of Obinutuzumab would be introduced and increased extremely slowly, but was really surprised and relieved to know that I was an hour into the actual drug without any adverse reaction. The relief was immense! I was and remain so in awe of the amazing design of our bodies and how they are able to adapt so quickly. The rest of the day passed and before I knew it the bag was empty. Time to go home, exhausted but so thankful. Thankfully, in the weeks before treatment I’d cooked a few meals for the freezer to use on treatment days. It’s been great to have easy hot food available at the end of each tiring day.

It was after this second infusion that I began to notice something amazing. The lymph nodes in my neck were much softer and drastically reduced in size! What an encouraging thing that even after only two days of treatment I could see physical evidence that things were improving. My “blood” family immediately saw the difference on the Zoom call that Saturday and rejoiced with me. I had also been feeling some tightness in my chest in the weeks prior to treatment. The CT scan had shown a cluster of swollen lymph nodes in that area, but again after the first two infusions I started to feel clearer in my chest – a very welcome improvement.

I had three more infusions in the following two weeks, both passing without incident. The only side effect I felt at home in those early couple of weeks was a slightly spaced out feeling, probably due to the bag of medication I’d been sent home with (antibiotics, antivirals, steroids in case of reaction, Allopurinol to deal with uric acid, and stomach tablets to help with the effects of all the other tablets!) Generally I only take the odd Paracetomol for a headache so my body took a while to get used to all the medication. Again I was pleasantly surprised how quickly my body adapted and the spaced out feeling passed. I have still had periods of fatigue, but I have also had some days when I felt more energy, such that I realised how poorly I had been feeling leading up to treatment. Needless to say this has been so encouraging.

As I write I am in the first few weeks of starting the Venetoclax tablets which I will take for a year. So, on we go!

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