The next phase

I saw my oncologist on Wednesday last week and we were finally in a position to decide what my next treatment would be.

I won’t go into the details regarding why it took a while for us to work out what the options were as it’s quite complicated. Suffice to say that on Friday night I started on my third line of treatment for the secondary breast cancer I was diagnosed with in Spring 2019. The other two lines each worked for around a year before the cancer – which has progressed but is still confined to my bones and my bone marrow – found a way of outwitting them. I’d be more than happy to get anything near a year with this treatment I’ve just started. As with any treatment, though, there’s no guarantee it will work at all.

The drugs I’m now on are everolimus (brand name Afinitor) and exemestane (Aromasin). They come in tablet form and I’ve to take one of each, once a day. One has to be taken with or after a meal, so I’ll take both after our evening meal. I will also still have Zometa, the bone-strengthening dug I have monthly via iv infusion.

One of the drugs can cause painful mouth sores so I’ve been given a mouth wash to use to help prevent the sores occurring or to alleviate the discomfort they’ll cause if they do occur.

I’d been off treatment since finishing my final cycle of capecitabine – the oral chemotherapy drug I’d been on – at the end of the first week of April. It’s a relief to be back on medication, even if the drugs I’m now taking come with a horribly long list of common side effects.

I have to admit that not being on any treatment freaked me out, at least initially. “Should I not start another round of capecitabine while we wait?”, I asked the consultant. No, she said, adding that there was little point in taking a drug that has essentially stopped working. “You’d get all the toxicity but none of the benefits.”

As for my new regimen, everolimus is a targeted therapy that blocks cancer growth . Exemestane is an oestrogen blocker. As I’ve explained before, the breast cancer I have is the most common type in that it thrives on oestrogen. Even when when post-menopausal, they still produce a certain amount of oestrogen.

Some of the potential side effects of these two new drugs are very common. Some are specific to everolimus and some to exemestane but I’ll just lump some of them together here: pneumonitis (inflammation of the lungs); mouth sores; taste changes; the usual increased risk of infection; muscle and/or joint pain; fatigue; feeling low; diarrhoea and/or constipation (go figure); liver and kidney dysfunction; sleep disruption; back pain; headaches; hot flushes; and pain, numbness and tingling in hands and fingers. And that’s just the ones classed as very common, which means they affect more than one in ten people taking them.

Of the above, I really wouldn’t notice the sleep disruption as I’m already sleeping badly as a result of the pain I have in my feet, a side effect of capecitabine and also of the chemo I had back in 2015 when I was being treated for primary breast cancer. I’d also been having some joint pain although this has eased off in recent days. To be honest, I also think I’ve been sleeping slightly better too (more on that below).

“I have a feeling that things are going to be tougher from here on in,” I said to the oncologist after I’d signed the consent form for everolimus and listened to her go through the potential side effects. She didn’t disagree but did say she hoped we could get to a place where I was “healthy and happy” on these two new drugs. Let’s hope we can. I honestly would never have thought I’d be so well (as it were) over the two years since my diagnosis. If we can somehow maintain some of that, great.

The next treatment after this one may well involve weekly iv chemo (it’s not quite weekly as you get every fourth week off). This would mean a massive change in terms of quality of life so there’s good reason to hope this latest regime keeps my cancer in check for a good long while.

I’ve seen a lot this past week of St George’s, the hospital in south west London where I’m being treated.

On Tuesday, I went to have blood taken for tests before seeing the consultant on Wednesday. If any of you have wondered what blood tests are done, take a look at what was ordered for me on one occasion recently.

Also on Wednesday, after seeing the consultant, I had a chest x-ray. Given that everolimus can affect your lungs, doing an x-ray now means they will have baseline images to compare with those from the chest x-ray I’ll have after my first 30-day cycle of everolimus and exemestane.

On Thursday, I popped in to pick up some painkillers from the pharmacy, together with some low-dose sleeping tablets. I’m extremely reluctant to take them but not being able to sleep despite taking strong painkillers is no laughing matter. I have so far only felt the need to take them once but I guess it’s good to know they’re there. There’s no point being a martyr about it.

On Friday, I went to pick up the new drugs I’m on; one of them wasn’t in stock when I’d been there earlier in the week. After that I went straight to the Dermatology Department to have two moles on the sole of my right foot and one of my right calf removed. It was done under local anaesthetic. I’m bandaged up nicely and I’d to “take it easy” and have my feet up for the first couple of days after the procedure. I can go on walks but I’ve not to do anything more strenuous than that for at least two weeks, depending on how the healing goes.

The dermatologist who did the procedure reiterated that they were removing the moles for precautionary measures and that they weren’t expecting to find anything nasty when it came to examining the removed tissue.

It’s been a pretty tough few weeks on the health front. On other fronts, though, things have been great. It’s like I’m living two parallel lives.

Work, for example, continues to be challenging and rewarding. Socially, I’ve played tennis and I’ve met up with lots of different sets of friends now that some of the pandemic-related restrictions have been lifted. We’re still not allowed to socialise indoors so we’ve met in pub beer gardens, in roof-top restaurants, in people’s own back gardens, in parks and in the countryside. Lots more gatherings are planned over the next few weeks. The next big thing will be going to visit and stay with friends and/or family around the country that I haven’t seen in ages once that’s allowed.

The weather’s been good.

We’ve done the planned mini revamp of our garden.

It’s Spring. Everything is in bloom and there are lots of baby birds at the pond on Tooting Common at the bottom of our road.

Friday was a beautiful day and I went on a short bike ride before going to the hospital.

I cycled to and around our four local “commons” – Streatham, Balham, Clapham and Wandsworth – to remind myself of how lucky we are to have these beautiful open green spaces so close at hand despite living in the busy capital.

Our boys were home from uni for a couple of weeks and seemed to be on good form – remarkable given the year they’ve had.

Their returning home was well timed as they – the younger one in particular – did the painting that was involved in the garden upgrade.

I’ve also had a haircut, using a voucher our sons gave me as a Christmas present. They bought it days before the latest lockdown that forced all hairdressers to close. They’ve only just re-opened. My hair hadn’t been that long for decades.

My husband continues to be amazing. I could not be more grateful.

Medically, I continue to be closely monitored. I have blood tests and a follow-up with the consultant in two weeks’ time, mid-way through the first cycle. Before then, though, I’m to have an MRI scan of my liver. The consultant wants to see whether anything suspect is happening there that might not have been picked up on the recent PET-CT scan I had.

Let’s see how it all goes. We have no other choice. In the meantime, we’ll get on with enjoying those parts of life over which we have some control.

Restrictions lifting and moving on to the next treatment

Pandemic restrictions are loosening and things are looking up on that front. 

We’ve been limited to meeting up with just one other person outside for exercise since December but now the rule of six – whereby you are allowed to gather outside in groups of up to six, including in your back garden – is back. I’m already taking advantage of it. 

In the fading sunshine one evening last week, my husband and I had beers on Tooting Common at the bottom of our street with some friends who live locally. 

We were all so happy to see each other and to be able to actually sit down and relax and enjoy each other’s company. We’ve been meeting up on Zoom and we’ve had some really fun evenings. However, as everyone knows, it’s really, really, really not the same as meeting up in person. This group largely comprises people who were parents of children who attended the primary school at the time our two sons went there. Before the pandemic, we’d meet up once a month in a local pub. Our boys are now 22 and 20 and it’s been a great way of keeping in touch and maintaining friendships. There are way more than six of us; we did more or less manage to arrange ourselves into groups of six. 

Talking of our sons, one is already back home from uni for the Easter holidays. The other is due back later today or tomorrow. We haven’t seen them in three months. That’s not long compared with a lot of people, I know, but this is longest we haven’t seen each other in person. On Easter Sunday, the four of us will have lunch in our garden with my two London-based nieces. Blankets may be involved, depending on the weather. 

Tomorrow morning I’m meeting up, again on the common, with some other good, local friends, all women this time. We’ll be having coffee and pastries rather than beer! Before the pandemic, we would meet up in each other’s houses once a month to catch up, watch a film and discuss it afterwards. We’ve continued throughout the pandemic, remotely. Someone chooses a film, we have a chat on Zoom then we each watch the film in our own homes and we catch up again afterwards on Zoom to discuss the film. It’s been great. There are five of us in this little group, and I think it’s safe to say we all very much appreciate, and take strength and comfort from, each other. Since last August, the group has experienced three bereavements. My mum died from an infection, one member lost her sister to dementia, and another her husband, tragically to COVID. 

Later on next week, I have a game of tennis planned with my four very special tennis buddies, followed by a birthday lunch for one of them hosted in the back garden of another of them. 

Also in our short-term plans is a drive an hour or so out of London to meet and have a walk with some friends we haven’t seen since last August.

Pubs can serve food outside to groups of up to six as of 12th April. Not only have we managed to make two evening reservations for that and the following week, some friends have invited us to celebrate the 60th birthday of one of them one evening that first week at a pub where they managed to get a reservation. Also, an early supper is in the diary one evening over the next two weeks with the tennis crowd. Finally, the BellaVelo cycling club I’m a member of has booked all the outdoor tables at pub on 21st April and I’m due to attend that too. There can be no mixing between tables but it will still be lovely. 

Finally, we’ve booked to eat out – inside!!! – with four friends on the very first day that’s allowed, 17th May. 

If I sound rather desperate to be out and about again and see people, it’s because I am.

We’re also having a mini revamp done of our garden. That is very exciting, especially as we’ll probably be spending a lot of time there this Spring and Summer.

Staying with the good news, I’m due to have my second dose of the Pfizer/BioNTech COVID-19 vaccine this coming Tuesday. It’s not known how much protection the vaccines provide for immunocompromised individuals such as myself, but it has to be higher than zero, so that’s something. 

On the downside, I didn’t get the best results from my most recent set of scans. 

There are some positives. My secondary breast cancer is still confined to my bones and bone marrow; it hasn’t spread to organs such as my liver or lungs. Also, the cancer that’s in my spine isn’t exerting pressure on my spinal cord. 

The bad news is that the cancer has spread within my bones. It is showing up on scans in places that were clear before. “Disease progression with widespread metastatic disease activity now apparent”, reads the report from the combined PET-CT scan of my body from the top of my spine to my mid thighs. The MRI scan I had of my spine shows “widespread diffuse abnormal marrow signal throughout the spine, in keeping with metastatic infiltration”. That said, “overall appearances [of the spine] are relatively stable” compared to the previous MRI scan I had, almost a year ago.

In addition to there having been progression, the relevant tumour marker level in my blood is continuing to rise and my haemoglobin level has been falling. This means it’s time to come off capecitabine, the oral chemo I’ve been on for the past 10 or 11 months and move on to what will be my third line of treatment since my diagnosis of secondary breast cancer two years ago.

There are a couple or perhaps even several treatment options, each of which comes with its own delightful set of potential side effects. We’re still working out what is best and what is possible. I see the oncologist again this coming week, when we will have some more information to inform what the next steps will be. In the meantime, I’m still on capecitabine.

In light of the scan results, we made a change to the other treatment I’d been on.

With bone mets, the cancer weakens your bones. You’re therefore given one or other of two drugs that are aimed at reducing the risk of what are known as “skeletal-related events”, that is fractures, spinal cord compression, bone pain requiring palliative radiotherapy, and orthopaedic surgery. 

In my case, as well as taking capecitabine tablets morning and evening on a one-week on, one-week off basis, I’d been having monthly injections of denosumab (brand name Xgeva), one of the two above-mentioned bone-strengthening drugs.

On seeing the scan results, my oncologist changed from me from denosumab back to Zometa/zoledronic acid, which has the same aim as denosumab but works in a different way. The idea is that trying something different, even though I’ve been on Zometa before, will have a positive effect. I’m fine with that. My position is that almost anything is worth a go, despite the fact that long-term use of Zometa is associated with a higher risk of dental problems than denosumab, such as sore gums and tooth loosening.

I’d only just got used to giving myself the denosumab injections at home. Now it’s back to the treatment day unit at the hospital every four weeks for an iv infusion of Zometa. The procedure only takes half an hour so I guess I shouldn’t complain too much. However, I hadn’t been hooked up to a drip for more than a year (other than to have a blood transfusion last July) and I have to say it felt weird.

Also, because I don’t do things by half, I’m to have two freckles/moles/lesions/whatever removed and biopsied. The dermatologists who examined me said they don’t think they’re suspicious but they advise removal given my current situation and my history of melanoma. 

One lesion is on the sole of my right foot and the other is on my right calf, near the scar from where I had a microinvasive melanoma removed in 2017. The latter has been there forever; the one on the sole of my foot is new. I contacted my GP, who referred me to the dermatology department at the hospital where I’m having my breast cancer treatment. “I’m here so often I should bring a sleeping bag,” I said to my oncologist when I told her about this latest news. I thought it was funny.

I’m waiting to hear when my appointment to remove the moles will be. 

Since I completed my big athletic achievement in early March, I’ve been taking it easy on the exercise front to give my poor feet a rest after subjecting them to such a pounding in January and February. The throbbing - a side effect of capecitabine combined with pre-existing damage from the chemo I had in 2015 – has definitely subsided but it is so much worse at night than during the day. I could count on one hand the number of proper sleeps I’ve had this month. Getting up in the middle of the night to wrap my feet in a cold, wet towel in an effort to sooth the throbbing is not an uncommon event.

I’ve also been feeling knackered – probably due to a mix of a lack of sleep, the cancer having spread, a low haemoglobin level, general pandemic-related general fed-upness, and – perhaps ironically – not doing much exercise other than walking. Seriously, exercise is known to help reducing cancer-related fatigue. And as we all know, if we can exercise, it does make us feel better.

I’ll give the running a rest for another while, but hopefully I’ll start getting some proper bike rides in soon. As for what playing tennis will do for my feet, I have no idea, but I want to play and so I will. I’m not sure my feet can be much worse than they have already been.

Finishing off, we’ll just have to see how it goes with whatever new treatments I end up on. I was on each of the two previous lines of treatment for almost a year. Let’s see how long I last on this next one. Keep your fingers crossed for me.