A stark reminder that you can never relax

The results from the PET-CT scan I had at the beginning of this month could have been a lot worse but they did not bring the across-the-board good news we were hoping for.

Everything had been pointing to a positive overall response to the treatment I started in May for secondary breast cancer. However, the scan results showed that there has been some growth in the cancer that’s in my spine.

The level of growth is not enough to necessitate an immediate change in core treatment but I’m aware this could now happen sooner rather than later.

The results from the MRI scan I had yesterday will provide additional information that will help inform near-future treatment decisions. We’ll also be looking very closely at next month’s blood test results and I’m to have a repeat PET-CT scan in two months’ time.

I wasn’t surprised by the results; nothing surprises me with this, good or bad. I’m not freaking out but I am hugely disappointed.

We had hoped that the drugs were keeping everything under control. Rather, it turns out I’m having a varied response to treatment. Some aspects of the cancer are responding differently from others. While this is not usual, it’s also not hugely unusual.

I’d been having blood tests every month since starting treatment for the breast cancer that had spread or metastasised to my bones (the main focus is certain vertebrae in my spine) and bone marrow. We knew from the results that the drugs were working really well on the bone marrow front. We’d even postponed the PET-CT scan – my first since I was diagnosed – by a couple of months because things were looking so good. There had been some twitches here and there in my back in recent weeks but nothing approaching what I’d describe as pain.

The good news is that there’s no sign the cancer has spread anywhere else and my bone marrow function continues to improve. And so I continue on my current treatment.

Of potential significance is the fact that the latest blood test results showed that a tumour marker specific to secondary breast cancer is very slightly up. It’s fallen every month since I started treatment and while the rise is within acceptable limits, if it contines to rise we’ll be looking at calling it a day on the drugs I’m on and moving to a different treatment.

More positively, other tumour markers are continuing to fall.

There has been one change to treatment. Given that “bone mets” weakens your bones and puts them at risk of fracture, I was on a bone strengthening drug called zoledronic acid or Zometa. I’ve come off that and have moved to a different drug – denosumab (Xgeva) – that is designed to do the same thing but in a different way. The two core drugs – fulvestrant (Faslodex) and abemaciclib (Verzenios) – haven’t changed. Treatment is on a monthly cycle; I went ahead with round #7 last week.

In other news, I’m still running, edging closer by the week to my 100th Parkrun, the free, volunteer-led 5k running event that takes place in parks up and down the country every Saturday morning. Just last weekend, visiting my family in Glasgow, I ticked off number 94. I ran with two of my brothers and a niece and nephew.

It’s taking some time to get my head round this latest development. Things had been going so well that I’d allowed myself to start looking further ahead than just one or two months. After this turn of events, it’s very much back to one month at a time.

So, a stark reminder that no matter how well you think things are going, with this disease you cannot take anything for granted. As I’ve said before, we can but take things as they come.

In the meantime, on we go. For now,  that involves a ten-day holiday in Israel and Jordan for my other half and me. It was have to been 14 days but we changed our outward flight to accommodate the MRI appointment and are leaving a few days later than planned. We fly out later today. An adventure awaits.

Lucky or unlucky? It depends how you look at it

Understandably, a lot of people get upset when you tell them you’ve been diagnosed with secondary breast cancer. My boss was one of the first people I told, back in April or May. We chatted and she said, among other things, that I’d been so unlucky.

She and I both know how serious any type of secondary cancer is. If you’ve been diagnosed early enough, it will be treatable and can be controlled – in some cases for many years – but ultimately it’s incurable. What treatment does is buy you time. 

Instinctively I agreed with my boss. To find out at the age of 55 that your likely prognosis is in years not decades felt pretty unlucky to me.

Almost immediately, though, it occurred to me that that wasn’t actually the case. In fact, I said to her while trying to hold back tears, I’ve been incredibly lucky.

What do I mean by that?

Well, there have been some very sad and difficult times but, broadly speaking, I have not had a hard life.

I have an amazing partner I’ve essentially been with since I was 21. We’ve had and are continuing to have lots of good times together.

I have two lovely, healthy and seemingly happy young-adult children. 

Mum, my brothers and me

I had a happy childhood with loving parents and five great brothers. My dad died just a few years ago but my mum is alive and kicking and clearly loves me to bits. My brothers and I are all still very close. The photo here is from when I was up in Glasgow this summer.

I have two aunts – my dad’s two sisters – out in the US, one of whom is also my godmother. I’m very close to both despite the distance between us. I went out to visit them this past summer, thus the photo below. One of my brothers was there too, from Scotland, and while I know the term “joy-filled” sounds schmaltzy and cliched, I can’t think of a better way to describe the few days we were all together.

My husband’s parents, my in-laws, thought the world of me. We were lucky to have them in our lives for as long as we did.

Outside of the family, I have a godson and goddaughter I’m incredibly fond of. I got to see both of them this summer.

My lovely aunts and me

I have numerous wonderful friends and lots of different friendship and acquaintanceship groups.

We’re financially secure and I have great colleagues and a job I love.

I’ve been able to travel extensively, both on a personal and professional level.

I’ve been responding well to treatment; there was no guarantee I would. 

Physically, most of the time, I really don’t feel like there’s anything wrong with me over and above the standard things any 56-year-old female might expect to have. I’m cycling, running and playing tennis.

Other treatment options will be available once the specific treatment that I’m on stops working. I hope it’ll be a long time before that happens but I’m aware it could happen sooner rather than later.

So have I been lucky or unlucky? Maybe it’s not a question of one or the other. We’ve had our share of troubles and no-one would ever choose to have what I have. Regardless of how well I feel physically at the moment, living with an incurable disease is really tough emotionally. Among other things it’s hard not to feel guilty for bringing this upset into everyone’s lives. 

Healthwise, I can but hope for the best and take the coming months and hopefully years as they come. In the meantime, I’ll try to stay calm and be easy on myself, and keep appreciating and making the most of this life – lucky or unlucky – that I have.

Hey, hospital, where’s my blood?

I should have been in my local hospital in south London this afternoon having my sixth monthly cycle of treatment for the secondary breast cancer with which I was diagnosed in April. Instead I was sitting round the corner on the high street having fish and chips in a great little chippie.

Why? Because the hospital has seemingly lost the blood I had taken shortly after 0800 this morning for testing to see whether I was OK to go ahead with treatment this afternoon. I had a second lot of bloods taken early this afternoon and my treatment appointment has been rescheduled for 1100 tomorrow. I’ll hear from the hospital this evening only if the results mean I can’t have treatment.

Thus the fish and chips. Comfort food was needed to calm me down.

I’m over it now but at the time I was both frustrated and upset and I’m afraid I was initially less than polite with the poor registrar who saw me and had to try and work out what on earth was going on. I hope I caught myself in time; I have also since apologised.

It didn’t help that while I was waiting to be seen, I’d to listen to the inanity that is Loose Women, which was on in the TV in the waiting room. Among the topics for discussion on the chat show was whether it’s ok to dump your hairdresser. I swear I heard someone say it was easier to cheat on your partner. I’m sorry, but ffs.

You psyche yourself up massively for these appointments. What will the blood test results show? Will my tumour markers be up? If so, what might that mean? Will we go ahead with the next cycle of treatment or not? To be fair, this is the first time anything like this has happened. Everyone was very apologetic and keen that the alternative arrangements were as convenient for me as they could be. 

They say you shouldn’t sweat the small stuff. Was this small stuff? In the grand scheme of things it was, but for a while it felt like big stuff to me.

I just got back last night from a short cycling holiday in Spain and I had today and tomorrow – and indeed this coming weekend – meticulously planned. It’s our older son’s 21st birthday on Saturday and we’re having a small family gathering that evening. On my list for tomorrow was to spend a couple of hours’ gardening (the garden’s a mess), buy helium balloons and party accessories, buy food and cook for Saturday, get some photos printed, sort out a present and, oh yes, meet my mum, who has dementia, off the train from Glasgow at Euston at 1600 and bring her and a bike (my brother’s bike, not my mum’s!) back to the house. Thankfully my brother will be there to help me get get my mum and the bike – and me – into a taxi.

On treatment days, I’m usually at the hospital for a couple of hours. On those days, I generally do nothing other than have treatment and relax around the house. Treatment’s generally not painful but it’s not an easy day. I have one drug administered as two injections, one in each buttock, each of which takes a couple of minutes to administer. I also have an infusion (as you do with chemo) of a bone-strengthening drug – that’s usually over and done in half an hour. The oncology nurses are incredibly caring and careful doing the injections and finding a good vein into which to insert the cannula for the infusion. But while generally none of it is painful, it’s certainly not pleasant.

Usually I have bloods done one day then see the consultant the following day with a view to having treatment later that same day. Ironically, this time round, the consultant had very accommodatingIy arranged for me to have everything done on the same day. This was so I could go on the cycling trip. I came back late last night and went down to the hospital first thing this morning to have blood taken so the results would be ready for my appointment with the consultant (or in the event with the registrar) a few hours later. Luckily I live close to the hospital and can easily get there and back.

There’s plenty of good news. I feel incredibly fit and well. Not only am I doing lots of cycling, I’m also running and I’m even playing tennis again. Back when I was diagnosed, I really thought my running and tennis days were over. On the cycling front, I’m incredibly touched that the two clubs I ride with are organising a joint 100k ride this coming Sunday (half way through Breast Cancer Awareness Month) to raise money for research into secondary breast cancer.

The cycling holiday, organised by a company called Mellow Jersey, was fabulous. The feeling I had hurtling downhill on my bike at almost 60 kilometres an hour will take some beating. As will the feeling of triumph at the top of a steady climb of around eight kilometres. I was by far the slowest in my group on the hills, but someone has to be last and really I was happy just to be there. When I was first diagnosed, I had no idea whether I’d be in a position to do something like this ever again. Cycling more than 300 kilometres over four consecutive days would have been inconceivable just a few months ago.

But where’s my blood? I know big institutions can’t be totally efficient but you have to wonder where the two vials of blood are that I had taken this morning. They have to be physically somewhere. The department that took them said they were delivered to the lab but the lab claimed to have no trace of them. Like lots of lost things, they’ll probably turn up and, in this case, we’ll end up with two lots of results on the system.

As for me now, I’m off to do some of the many, many things I had planned to do tomorrow. Hopefully I won’t hear from the hospital this evening and treatment will go ahead tomorrow, we’ll all have a lovely time with the birthday boy on Saturday evening, and we’ll have a great bike ride on Sunday.

Grounds for optimism and a fantastic bike ride

Today I started my fourth 28-day cycle of treatment for the metastatic breast cancer with which I was diagnosed in April.

I appear to be responding well to the combination of drugs that I’m on. The blood test results I got yesterday in advance of treatment today were all encouraging. They showed that everything that needs to be down is down – including the all-important breast cancer tumour marker – and everything that needs to be up – including my haemoglobin level and white blood cell count – is up. Also, I continue to be totally pain free.

I no longer take anything for granted. I know things can change quickly in this game but there are grounds to believe that this treatment might keep the cancer in check for a good while. The awful thing about the beast that is advanced breast cancer is that you can never tell how long “a good while” might be. That said, there’s no doubting that we’re in as good a place as we could optimistically expect to be at this particular point.

The breast cancer I was treated for in 2015/16 has spread to my bones and bone marrow.

The implication on the haemoglobin and neutrophil front from these latest blood test results is that my bone marrow is under less stress due to the action of the drugs on the cancer. The debilitating pain I had in my right hip vanished long ago and may not even have been cancer. On top of all that, there is now the possibility that what we thought was cancer in a lower vertebra and was causing intense pain initially may also not have been. So the focus is on my bone marrow and on two vertebrae in my upper spine.

All things going well, as with the last cycle I won’t see the consultant for the whole of this cycle. And I’m down from two to one mid-cycle injections of filgrastim, the white blood cell booster. Also, with advanced breast cancer you have periodic PET-CT scans to determine whether the cancer has spread. Given the blood test results and the fact that I’m in no pain means we’re delaying my first repeat scan by a couple of months.

It’s been a great four weeks. We’ve had a lovely holiday in Spain*. Our two boys got their first-choice accommodation at the universities they’ll be heading off to in September. I’ve taken unpaid leave from work to allow me to make the most of the summer; work has been incredibly supportive in light of my diagnosis. 37365C77-AA25-4BDC-B860-D545C8721E29 I’m continuing to do early-morning swims with friends at Tooting Lido, one of the country’s largest outdoor swimming pools which happens to be a 15-minute walk from where I live in south-west London (see photo from this morning – the water was cold despite the sun). Also, I’m planning a trip to the US in September to visit two aunts, one of whom is also my godmother.

The highlight, however, has been cycling the Prudential Ride London – Surrey 100-mile bike ride at the beginning of August. Given the circumstances, I couldn’t be happier.

Ride London was meant to be the icing on the cake of a summer of cycling. However, I had to pull out of the two big events I had planned to do in June and July and Ride London turned out to be a big event in itself.

When I got my diagnosis in April, my head was not in a good space. I also had anaemia which meant I very easily got tired. At best, come August, I thought I might be in a position to try the shorter, 46-mile version of the route. In the end, I got my head in gear. In addition, a blood transfusion gave me an energy boost and the confidence to get out and start training again.

I was delighted I was able to do this ride – as you can tell by photo of me at the finish line at Buckingham Palace. It’s on closed roads, some 32,000 cyclists take part and while it’s a bit chaotic, it’s a great event. This is the third consecutive year I’ve done it.

It’s quite hard to get your head round the fact that you can comfortably cycle some 100 miles while having advanced breast cancer. I guess I have to thank modern medicine; a consultant oncologist who clearly thinks that if you think you can do something you should give it a go; incredible support from friends and cycling buddies who took me out on training rides, encouraged me, and had more confidence in me than I had in myself; and, I have to concede, curiousity (can I do this?) and extreme bloody-mindedness (I can do this. I will do this.) on my part.

Sometimes you feel like you’re two different people living two different lives running in parallel. One’s busy training for and doing 100-mile bike rides and the other is undergoing treatment for and living with an ultimately incurable disease. But of course it’s all just you.

There was no guarantee whatsoever I’d be in this position at this stage. It’s early days and, as with anything in life, nothing lasts forever. We just have to embrace the good times while we can.

*I had to self-inject filgrastim on Aug 6th and 20th and I didn’t want to traipse through cauldron-like Europe with injections that needed to be kept refrigerated. So we left the second injection in the fridge at home and went on a ten-day road trip in central and southern Spain from Aug 9th to 20th, during which we spent lots of time with various sets of good friends Andy and I first met when we both lived in Spain in the mid 1980s. We couldn’t have had a nicer time.

So how did it all happen?

Here’s how I found out I had secondary breast cancer.

I developed backache and a sore right hip in mid-March while I was on my first ever overseas cycling trip, in Mallorca. The week-long trip was the first proper phase of the huge amount of training I was planning to do over the following few months that was to have culminated in a long-distance, three-day charity bike ride in France in July.

Initially I put the pain down to a mix of factors. For starters, while I’d done plenty of indoor training, I hadn’t ridden much at all outside or for any distance over the winter, and here I was doing back-to-back 50-75 mile rides involving quite a few hills. Also, I wasn’t using my own bike. While the rental bike was far better than mine and I loved it, I figured I was probably riding in a different position and that that was part of the problem. I hoped I’d just strained my back and hip and that it would soon get better. Interestingly – and fortunately – while the pain was at times quite bad, there was no pain at all when I was on the bike and cycling.

The pain persisted when I got back to London, although it would come and go. The most common place to which breast cancer metastasises or spreads is the bones and I knew backache was a potential symptom of it having spread to the spine. The pain was worse at night and when I was lying down. I did some reading and discovered that these too were signs of “bone mets” in the spine.

I very rarely get backache of any kind. Pretty quickly therefore, I decided to contact the consultant oncologist who treated me for primary breast cancer in the summer of 2015 and ask her advice, hoping all the while that it was just a sprain and that it would go away soon.

That was in late March. The consultant said it made sense to investigate further, so I had some blood tests done the following week.

The following weekend, I held a games afternoon at home to raise funds for the charity I was going to be doing for the bike ride in France in July. Other than the intermittent back ache and the periodic hip pain (the latter had in fact almost gone by then), I felt as fit as a fiddle. This fundraiser had been planned for ages and, at that point, while I was worried, I was still hoping the remaining pain would disappear with time.

That hope all but disappeared when the consultant subsequently called to say some of the blood results “weren’t entirely normal”. It made sense to follow up, she said, and a PET CT scan was being arranged for the following week. The writing was on the wall.

Despite this big shadow hanging over us, my husband and I managed to have a lovely Easter. The pain in my right hip had gone away completely at this point. As for the pain in my back, it sometimes disappeared for days at at a time, it always came back.

In the now forlorn hope that I would still be doing the various cycling events I had planned for the summer – or perhaps it was just to make myself feel better – I went out training on three of the four days of the Easter weekend. I even set myself a new speed record, reaching just over 40mph on a descent in Surrey.

My husband came with me on two of the rides. We don’t usually ride together but I think we were both aware that our lives were about to undergo a massive change and wanted to enjoy each other’s company while things were still relatively normal.

I had an appointment with the consultant the day after the Easter weekend, on 23 April. This was a couple of days before I had the PET CT scan and it was to have been my regular annual review with her. The consultant knows from having treated me before that I like facts and straight talking. So when I asked what she thought the problem was, she told me that, going by the blood test results, she strongly suspected that the breast cancer I’d been treated for more than three years earlier had spread to my bones and infiltrated my bone marrow. We even talked through potential treatment plans.

Among other things, the level of a specific breast cancer marker (CA 15-3) in my blood was very high. While this was “meaningless in itself”, I also had anaemia. The two things together clearly spelt trouble.

A week later, and the results of the PET CT scan confirmed what the consultant had predicted – “bone metastases and bone marrow relapse”. As well as there being cancer in my bone marrow and in three vertebrae, there is a lesion in my left-side rib area and there are “areas of less significant scattered bone disease”. As for my right hip, while there are no obvious signs of cancer in the hip itself, the pain may well be related in some way to the diagnosis. Then again, it may not be.

Thankfully our two young-adult sons were away at the time. We had time to digest the news ourselves and to plan a strategy for breaking it to them.

Since the PET CT scan, I’ve had numerous additional blood tests, a bone marrow biopsy, an MRI scan of my spine, and I’ve started treatment.

I have, of course, had to withdraw from the charity bike ride in France in July. More on that later.

Treatment – a reluctant trailblazer

“A trailblazer on a path you don’t want to be on.”

I paraphrase slightly, but that’s what the specialist breast cancer nurse at the hospital where I’m being treated said I was.

I have to say I was touched by the huge degree of empathy with which the nurse said it. This was just after the consultant told me that the treatment she was proposing for my secondary breast cancer was a combination of drugs that has just been made available under the NHS in England for women in my specific situation.

Given together, the drugs have been shown to improve what’s called “progression free survival”, ie the length of time patients live without their disease getting worse, and so delay the need for chemotherapy.

This latest development has been described as “fantastic news” for women such as me. The nurse was spot on with her description. I’m the first person at my stage of the disease and at my stage of treatment to have this therapy at the hospital trust where I’m being treated. I’m definitely grateful, but it’s a funny kind of gratefulness.

I started treatment on 22 May and I’m trying to focus more on the fact that the consultant is hoping for a “durable clinical response” than on the “significant, unavoidable or frequently occurring” risks of the treatment that are ticked on the consent form (see image).

The drugs are abemaciclib and fulvestrant – the brand names are Verzenios and Faslodex respectively for anyone who’s interested.

Abemaciclib is taken continuously in 28-day cycles as tablets – one tablet, twice a day, 12 hours apart. Fulvestrant is given as two injections – one in each buttock, not pleasant – each of which takes a couple of minutes to administer. You’re given it on Day 1 and Day 15 of Cycle 1, then on Day 1 of Cycle 2 and all future cycles – so that’s every two weeks for the first three doses, then once every four weeks.

You stay on these drugs for as long as they’re keeping the cancer in check and you can manage the side effects. Or, officially, for “as long as the patient is deriving clinical benefit from therapy or until unacceptable toxicity occurs”.

It could be a few months before we find out whether the drugs are working or not. If they’re not, you move straight away on to the next line of treatment. As for toxicity, the big worry with abemaciclib is diarrhoea. It’s a very common side effect and it can be so severe that the dose has to be reduced or a break in treatment is required. Three weeks in and I’m extremely relieved to report that I have got off very lightly indeed on this front. That may be partly explained by the fact that one of the side effects of the painkiller I’m on for the pain from the “bone mets” I have is constipation. I like to imagine the two drugs battling it out together inside me for supremacy.

You’re under close medical supervision, especially in the initial phase of treatment. You have blood tests every two weeks for the first two months, monthly for the following two months, and then as needed. You have scans every few months to check whether the drugs are working.

The cancer is in my bone marrow and bones, most significantly in my spine. Bone mets weakens your bones and puts you at risk of fracture, so I’m also back on the bone-strengthening drug, zoledronic acid or Zometa. I have that monthly too – via infusion, like chemo, on the same day I have the fulvestrant injections. The infusion itself takes 15 – 20 minutes. Zometa can also ease the pain that comes with bone mets. On the downside, as I mentioned when I started taking it before, it can also occasionally cause a very nasty condition called osteonecrosis of the jaw.

Fulvestrant is a hormonal therapy that aims to help shrink or slow the growth of metastatic breast cancer such as mine that feeds on oestrogen. Abemaciclib is what’s called “targeted therapy”, ie it’s a type of drug that targets specific characteristics of cancer cells, such as a protein that allows the cancer cells to grow in a rapid or abnormal way. Abemaciclib is one of a class of drugs called CDK4/6 inhibitors, which work by targeting two crucial cell division proteins, CDK4 and CDK6.

There’s a bit of a debate over whether CDK4/6 inhibitors are chemo or not. In the end, it seems it comes down to definitions.

This new combination treatment that I’m on hasn’t been in use long enough for it to be clear whether it also improves long-term survival, ie whether you live longer overall. In terms of quality of life, though, improvement in progression free survival is hugely important. The treatments don’t get any easier as your cancer gets worse. Not do the effects of the cancer itself, of course, so the longer it can be held in check, the better.

It’s very early days. Let’s hope I fare well on that trail I’m reluctantly blazing.