A welcome surprise and another lesson in unpredictability

Well, well, well. Not only did the PET CT scan I had a couple of weeks ago show no disease progression, my tumour marker level has fallen twice in a row over the past several weeks. The ongoing inability of my bone marrow to make enough haemoglobin to transport sufficient amounts of oxygen around my body continues to be a major challenge but there’s no doubting this is welcome news.

It was not expected. For me, it’s yet another lesson in how unpredictable this whole thing is.

I was more or less resigned to the breast cancer that has spread to my bones and “infiltrated” my bone marrow having spread further. This would have meant my moving on to intravenous chemotherapy. Instead, I am staying on my current medication – a combination of two (non-chemo) drugs, everolimus (Afinitor) and exemestane (Aromasin). This will be my fourth monthly cycle on these two drugs, which are taken in tablet form, once daily.

I know that iv chemo is an inevitability and I have to accept that. However, I’d be lying if I said the thought of it doesn’t scare me, with all of the associated additional and potentially lengthy treatment sessions and toxic side effects, including hair loss. Thus my relief at having dodged this particular bullet – for however long it may be.

Let’s stay with the good news. Not only was there no progression, there was, in the words of my consultant oncologist, “a hint towards better” in that the disease in my spine and pelvis showed up as less bright on the PET scan than it has done on previous occasions. The brighter an area is on a PET scan, the more active the cancer is in that area.

As for the tumour marker, this had shot up considerably towards the end of the second treatment cycle, suggesting there had been an increase in cancer activity. Now, going by the latest test results, it is back at almost exactly the level it was at when I started this current treatment three months ago.

On now to the issue of my bone marrow and the fact that the cancer is impairing its ability to make healthy blood – most critically at this stage healthy red blood cells, which contain the haemoglobin that transports oxygen around the body.

On the haemoglobin front, I’ve essentially been anaemic to one degree or another since my diagnosis in the spring of 2019, well over two years ago now. Up until now we’ve intervened with transfusions of red blood cells when it has fallen to a level that’s considered too low. I now generally know myself when it’s falling as I get breathless doing the simplest of things such as climbing stairs. That’s pretty much the current state of affairs.

Yesterday, for example, I went to Tooting Bec lido* for the first time since last summer. It’s baking hot in London at the moment so this is a great place to be. I swam four widths (the pool is 33 yards wide), breast stroke, after which I thought my heart was going to burst out of my chest it was beating so hard! That said, it was fabulous to be there and I was fine after a rest.

The problem with blood transfusions is that you can only have so many before you get iron overload, a serious condition that can damage major organs such as the heart, liver and pancreas. We’re not close to that stage yet but it wouldn’t take long to get there if I were to continue to have transfusions as regularly as I’ve had them recently. Earlier this summer, I had two within less than six weeks of each other. We’re now therefore looking at ways of tackling the problem that don’t involve transfusions. I hope they work.

My tumour marker and haemoglobin levels will be monitored even more closely than usual over these coming weeks. The results of the other scan I had – an MRI of my spine – have still to come through. I should get those next week. 

I can also report that a good few of the drug side effects and/or other physical ailments that were making me so miserable on a physical – and emotional – level have subsided.

I’ve continued to stay to clear of the painful and spirit-sapping mouth and tongue sores that I had on and off during the first and second cycles. That sentence really does not do justice to how awful these sores are. 

The massive cold sore wound on my bottom lip that wasn’t healing and that’s been plaguing me for around six weeks seems to have a mind of its own. One day it seems almost to have gone but then it’s a bloody mess again the next. I’m not swearing here, it really is sometimes a bloody mess. However, it does seems to be going in the right direction, albeit very, very slowly. Also, the wounds from the two pigmented skin lesions that I had removed from the sole of my right foot and my right calf nearly three months ago have now completely healed. These two things combined allowed me to go to the lido yesterday, although I did keep my face out of the water to be on the safe side.

The night sweats have been much less frequent but are still pretty nasty when they do happen. 

The discomfort that I’d been feeling in some teeth has gone – at least for the moment. I have a session with the dental hygienist at the hospital next week, by which time I really hope the cold sore wound has fully cleared up.

The sore feet at night can be a bit of a nightmare, especially if I’ve been out on a long walk during the day. My plan to take sleeping tablets more regularly so as to basically knock myself out hasn’t worked as planned. You can’t take alcohol with sleeping tablets and at 7pm when I fancy a cold beer or glass of cold white wine (or both!), bedtime seems a long way off. The alcohol usually wins!

I’ve had some new joint pain, but I can’t tell whether this is cancer- or age-related. The pain either eases on its own or I take painkillers. 

My 58th birthday has come and gone.

There was so much going on and so much uncertainty on various levels in the weeks running up to the day that I had been veering from thinking I wanted to see as many people as possible to feeling that I just wanted to hide under the duvet all day.

In the end, I had a lovely time, with celebrations and events with friends and family spread over the best part of a week, or indeed longer.

On the day itself, we kept things low key, with a little but perfectly formed extended family group. The rain stayed off and the cake tasted as delicious as it looks in the photo.

Over the course of a few days, there were multiple deliveries of, among other things, cakes, pastries, chocolates and flowers – lots of flowers!

There was a trip to the Wimbledon tennis championships, with Dave, my friend and partner in seizing the day. I have incurable breast cancer; Dave is five years younger than me and has Parkinson’s disease.

My husband and I went to the Hampton Court Palace Garden Festival one evening. Friends treated us to supper at the smartest restaurant in our local area. Some very good friends visited and stayed over one evening. We had a very relaxing night away with our 22- and 20-year-old sons.

I also went to a gig at London’s Jazz Cafe on July 11th, the day after my birthday. This was the night of the European football championships final in which England – the “auld enemy” of my country of birth – were playing. I’d booked this evening out a while ago as a birthday treat for my husband, our sons and me. However, when it became clear that England was going to be in the finals, I started looking round for replacement company – friends who, like me, didn’t mind whether they watched the match or not. An Australian friend and a Dutch friend answered the call and we had a lovely evening – unlike the people watching the match, given the sad ending for England! I’m only sorry that one of the two friends had to self-isolating afterwards as she was “pinged” to say she’d been in close contact that evening with someone who later tested positive for COVID-19.

Suffice to say I have felt very loved over these past couple of weeks. The cutest and perhaps best birthday present of all was a promise (see photo) from our sons to become blood donors. I understand they were all set to donate before my birthday but they both contracted Covid and had to postpone it. I’m quite hardline on this in that I see giving blood as one’s civic duty but I have to concede there was a certain amount of persuasion and emotional blackmail involved here!

Back to my medical situation.

The bone marrow impairment is of course a big concern but one has to be grateful for the other, more positive news. I am delighted to have received this unexpected surprise. Nonetheless, it seems appropriate to end this post with a phrase that I’ve used many times before: let’s just see how things go.  

*At 100 yards long and 33 yards wide, Tooting Bec Lido in southwest London is the largest freshwater swimming pool by surface area in the United Kingdom. It holds a million gallons of water and is just a 15-minute walk from where we live.

Salted peanuts, citrus fruits and vinegar – they’re all back on the menu!

I am both relieved and happy to report that the two dreadfully painful mouth and tongue sores that I’d had for the past couple of weeks have gone.

The sores were a side effect of one of the two new drugs that I started taking just over three weeks ago for the secondary breast cancer that’s in my bones and bone marrow.

I made it very clear in my previous post just how awful these sores were. These past few days, though, I’ve been eating salted peanuts again – a favourite snack to accompany a pre-dinner drink. Not just that, I had an orange earlier today for the first time in almost three weeks. Finally, I am happy for my husband to start putting vinegar in the salad dressing again! 

Everything is back on the menu. At least it is for the moment. Mouth sores can come and go while you’re taking this drug – everolimus (Afinitor) – so we’ll enjoy this mouthsore-free period for as long as it lasts. I’ve been mouthwashing assiduously with the two rinses the oncologist prescribed for me. I guess I’ll continue to do so as a preventative measure.

Also this past week, I had the stitches taken out from the two wounds I have from the skin lesion removal procedures I had a few weeks ago. The wound on my right calf has healed beautifully but the one on the sole of my right foot has not. There has been a certain amount of discomfort associated with the “non-healing” and it means I’ll be off the tennis courts and off the bike for yet another couple of weeks. 

In case you’re wondering, yes, it was indeed painful having the stitches removed, especially those in my foot. I had to ask the nurse who was removing them to stop two or three if not four times so I could take a breather. In the end, the nurse had to call in one of the doctors – an expert in stitches removal apparently- to finish the job.

How painful was it? Well, as we all know, pain is very hard to measure objectively. However, I suspect that if it had been a person very close to me who’d been having this done, he might have fainted! He knows who he is – it’s not hard to guess his identity! – and he’s ok with me writing that. I did check!

I was due to get the results of the biopsies they did on the removed tissue on Thursday this past week, but instead I got a phone call to say the report’s not available yet.

Away from the medical stuff, we’ve been continuing to enjoy the easing of the pandemic-related lockdown restrictions. 

We’ve been out and about, enjoying the late Spring. Indeed we had a very eventful experience just a couple of days ago, during a trip to the beautiful space in southwest London that is Richmond Park.

I can’t remember the last time I was in the park without my bike; regular readers of this blog will know that it is a great place for cycling.

This time, however, my husband and I were on foot. We were going specifically to see the annual display of camelias, azaleas and bluebells in an area of the park called the Isabella Plantation. (There were lots of other flowers too, but I’m afraid my flower-identifying knowledge is extremely limited.)

Walking though the park after we’d seen the flowers, we came across a family of Egyptian geese.

When we first encountered this charming group, there were eight goslings and the mother was trapped inside a small enclosure in the park (photo on the left).

The father was outside the enclosure, unable to help. Both adult birds were clearly distressed – there was lots of squawking and heavy breathing. 

As it turns out, I was instrumental in facilitating the release of the mother, upon which the family hotfooted it towards the nearest pond (photo on the right). It’s a long story but the “rescue” was enabled by the actions of two helpful but distinctly underwhelmed members of the Metropolitan Police who had the misfortune to be in the area at the time!

The pond was about a ten-minute waddle from the enclosure. We followed, taking photos. It was all very cute and exciting.

A happy ending, you may be thinking. Sadly, it wasn’t so. On the way to the pond, disaster struck! To my horror, a big crow swooped down and snatched one of the goslings. As a result, only seven of them made it to the pond. In just a few seconds I went from feeling like a hero to feeling responsible for the death of a gosling. Nature can indeed be cruel.

As for the flowers in the Isabella Plantation, what can I say other than that they are an absolute delight.

In other developments, we’ve booked another couple of trips away over the next month or so – one to Manchester with friends and one to Wales to stay with some very good friends. We’ll catch up with some relatives while we’re in Manchester and, in Wales, I’m very much looking forward to seeing my teenaged goddaughter. That is despite the fact that she has said that, as well as looking forward to seeing me too, she “can’t wait to beat you at chess”. Mmm.

May 17th is an important day in England in terms of the restrictions easing. Museums and art galleries can open again, you can once again eat inside at pubs and restaurants, hotels can fully open again and you can stay overnight with relatives or friends. I’ve already bought tickets for a couple of exhibitions, one of which I’ll enjoy with an old friend who’s coming to London for the day the week after next. Also, tomorrow evening, I’ll be eating inside, at a (hopefully well-ventilated) pub restaurant, with friends, for the first time since last summer.

I’m well aware that we’re far from being out of the woods on the pandemic front – variants of concern, localised spikes in cases here in the UK, the tragic situation in India, etc. However, I’m determined, safely, to make the most of our newly returned freedoms while we have them. I’d like to have been able not to write the last four words in that previous sentence, but I’m sure I’m not alone in thinking that restrictions will come and go depending on how the situation evolves. That said, I tweeted recently that I intended to “carpe the sodding diem” out of this summer. That’s still my plan, the pandemic and my health allowing. 

I am, of course, also well aware that we still don’t know how much protection the vaccines give to people such as myself who have compromised immune systems. I won’t be diving in for big hugs with all and sundry and I think I’ll be steering clear of full-capacity cinemas and theatres for some time to come. I did feel uncomfortable on the London Underground the other day; while almost everyone was wearing a mask, it was much busier than it’s been in the past few months.

Back to medical practicalities. I’m less than one week away from finishing my first 30-day cycle of this new line of treatment. On Wednesday I go to the hospital for blood tests and a chest x-ray; the latter is to see whether there’s any damage to my lungs (another potential side effect). I see the consultant on Thursday for the blood test and x-ray results and to discuss how things are going.

This latest treatment consists of a combination of two drugs – everolimus and exemestane (Aromasin). I take one tablet of each every day. It may still be too early to tell whether they are having an effect as it can take some time for this to show. Other than the mouth sores, the only side effect I’ve noticed is the odd night sweat, similar to those many women get when they’re going through the menopause. They are not pleasant – who wants to have to change out wet nightwear at 2 or 3am? Finally, I wouldn’t be surprised to hear my haemoglobin level has dropped further.

We shall see. For now, though, I’m off to suck on a lemon.

Dodging a bullet

I feel like I’ve dodged a bullet.

Yesterday I had my monthly appointment with the oncologist and I got the results of the MRI scan I had on November 20th. That scan was prompted by the fact that the PET- CT scan I had had earlier that month had shown there had been some growth in the cancer that’s in my spine.

If this was confirmed by the MRI, there was a possibility I might need radiotherapy to shrink the tumour if it was seen to be getting too close to my spinal cord, where it could do some serious damage if left untreated.

I also got the results of the blood tests I’d had the previous day. Those results, combined with the scan results, would likely determine whether we needed to call a halt to the drugs I’m on and move on to the next line of treatment. That would have been very disappointing as things had seemed to be going so well. Obviously the longer you can stay on these early lines of treatment, the better.

Anyway, it turns out from the MRI scan results that, despite the “flare” highlighted on the PET-CT scan, there is “no strong evidence to suggest that there is disease progression”.

The results also confirm the “ongoing treatment response” on the bone marrow front. (The breast cancer I was treated for in 2015/16 has spread to my bones and bone marrow.)

Based on the MRI scan results and the blood test results, I went ahead yesterday afternoon with treatment cycle #8: the fulvestrant buttock injections, an injection in the stomach of denosumab*, and off home with the latest 28-day pack of abemaciclib tablets. The important tumour marker (CA 15-3) is up again but that in itself is not enough to come off this treatment. There’s stuff going on with my kidneys that could partly account for the rise. Importantly, my bone marrow function continues to improve – to the extent that this cycle I’ve not to give myself the injection of filgrastim, the white blood cell booster.

So no progression. No radiotherapy needed. Core treatment unchanged for one more month. A bullet dodged, whether for four weeks or longer we can’t know at this stage.

We still need to keep a very close eye on things. I see the consultant again in a month’s time and I’m to have repeat PET-CT and MRI scans early in the New Year.

So it’s still very much one month at a time but it’s nice that this particular month includes Christmas. We’re taking nothing for granted but this is an unexpected and welcome early present. We’ll accept it and be grateful.

*Denosumab is a bone-strengthening drug for the prevention of skeletal related events such as fracture, radiotherapy or surgery to the bone, or spinal cord compression. It’s given as a subcutaneous injection whereas Zometa, the bone hardener I was on previously, is given as an intravenous infusion like chemo. This means treatment now takes much less time – and I don’t have to go through the trauma of having a cannula inserted and being hooked up to a drip.