Well, it’s been a while since my last post, so I thought I’d provide an update. Last time round, I was coming to the end of my lutetium treatment which had produced disappointing results. Long story short, I decided to go ahead with the sixth cycle following a good psa reduction from the fifth treatment (hurray), but, after that, the psa rose quite sharply (boo). End result, I was exactly where I was at the start of the treatment, with just partial improvements in some bone mets/lymph nodes. So, I guess the lutetium was successful, but only in the sense that it held back disease progression for a while, rather than taking my psa right down and resolving some mets. Not a bad result, but not as good as I’d hoped.
After that, the doctors advised a period of rest/a holiday to get my strength back up after quite a long period of treatment and a number of operations. That sounded good to me, so we had a lovely break in Saint Lucia in early March – managing to get away in the short window that existed between the outbreak of concern over Covid-19 and lockdown in the UK.
I used a face mask on the flights to and from the Caribbean, and was subject to quite a few strange looks. Hardly anyone seemed concerned about coronavirus. I took the view that if the Chinese had closed down a city, then a region in fairly quick order something very serious was afoot – so have been really cautious from the beginning. And that has served me well, as I haven’t contracted the disease yet. Touch wood, I won’t.
My wife wasn’t as cautious, so a few days after we got back from our holiday, had full-blown symptoms (jeez, what has our family done to deserve all this?). There then followed a period of me trying to isolate from my wife whilst simultaneously trying to look after her – which was tricky, to say the least. I have to say, there were some touch and go moments where her blood oxygen levels were in the mid-80s. I have never seen anyone so ill. I found myself standing at her bedroom door a number of times listening to see if she was breathing. Indeed, there were times I actually broke social distancing rules to check she was still alive.
We were constantly debating whether or not she should go into hospital – at the time that was like giving yourself a death sentence due to the lack of knowledge about the disease, and the overload of the health system. So we decided against it. But, we were never confident it was the right decision. Fortunately, my wife is a very strong woman, and managed to pull through after battling away with COVID for around two and a half weeks. It took months before she was really herself again.
With my wife recovering, we turned our attention to life under lockdown. I’m fairly lucky as I can easily work from home, and we have a nice garden to sit out in, so the initial stage of lockdown wasn’t as hard for us as for others (a new found interest in gardening also helped). I even managed to get back on my static bike, and began to think a proper/outdoor ride might soon be on the cards (read my previous posts if you don’t know about my obsession with getting back on my bikes). But, after a few weeks I started to notice increasing pain in the middle of my spine.
At first I thought this was caused by the chair I’d been using to work on my computer at home – but things didn’t change when my orthopaedic chair was shipped home from the office. Then I thought it might be because I was leaning in to the computer screen more because of the cataract that had developed after the operation on my retina (an operation for which had been delayed because of the pandemic). But, a change of prescription in my glasses to account for that didn’t help either. So, I contacted my oncologist, who agreed I should probably have a scan.
And that, my friends, is when the sh@t hit the fan. In simple terms, there was new tumour growth at T8 and T9. My surgeon took some follow up scans and told me that if he didn’t operate ASAP, the pressure on my spinal chord would mean paralysis within four weeks. Well, that was a bit of a shock, to say the least. After the second operation on my spine in December 2018, I said that I would never have another – because the recuperation is just so difficult. But, it’s amazing the impact the word “paralysis” can have on your decision making process. So, I had the operation the following week (mid-June).
COVID-19 restrictions meant I couldn’t have any visitors at the hospital, so I spent the next ten days in a haze of opioid “bliss” watching movies/programmes that I now have no recollection of – followed by eight weeks at home trying to ween myself of the OxyContin – with associated withdrawal effects – before sorting out appointments for follow up scans needed ahead of planned cyber-knife treatment to “clean up” the bits of tumour the surgeon couldn’t remove.
I’ll cut to the chase. When I got a call from the radiotherapy consultant a few days later, he told me I had bulk tumour from T5 to T9 that had also spread laterally. Cyber-knife was no longer an option, a wider blast over the whole area was needed which, at best, would simply delay paralysis and mess me up in the long term (but had to be done to address the more pressing short term issues I was facing). My oncologist would then follow this up with four rounds of pembrolizumab treatment (as my tumours exhibit micro satellite instability).
Once again, to say I was shocked would be an understatement. It’s not that I wasn’t expecting to get to this stage at some point, more that I thought it would take a bit longer. We had to tell the kids. It was horrible. I really feel for them. They are 22 and 20. They’ve already had to deal with the BRAC2 issue. It’s not fair. I’m still hopeful that I will be the one in a million patient that responds to immunotherapy, but realise I have to be realistic now, I’ve pretty much run out of options ….
… I’m picking this up again a few weeks after I started writing this post. I’ve had the radiotherapy, and two rounds of pembrolizumab. The immunotherapy started a week after radiotherapy finished (20 grey over five days). I had a massive increase in pain around a week after the first infusion of pembrolizumab, which I assumed was related to the infusion, but my oncologist thinks is more likely linked to the radiation. I’m still not sure, as there was a smaller but noticeable increase in pain a few days after the second pembrolizumab infusion.
Either way, I’ve agreed to see what the oncologist calls a palliative pain specialist, but only if he is referred to as a “symptom reliever” – I don’t do “palliative” as it makes it sound like I’m too close to death. He has been changing the mix of medications I take with the aim of reducing overall intake, resolving possible negative interactions, and to control pain as much as possible. It’s been a bit up and down – and that could have affected my pain levels at key points in the treatment cycle, so hopefully this will soon be sorted out.
… a few more weeks have passed since I’ve worked on this note. Over that period, I’ve been finding the walks around the park with our dog becoming a bit more difficult. I have a less energy, breathing is harder, and my right knee feels strange – it gives way every so often. There’s tingling in my toes and fingers. All of these are well know side effects of the pembrolizumab, but I’m worried it might be spinal cord compression. After a chat with the oncologist that included a deep dive into all the other indicators of cord compression, it was felt that it’s probably just the immunotherapy. In fact, I was given the ok to re-start with the physio who helped me recover from the previous operations I’ve had, and appointments were made for me to see a urologist, so that we can be definitive over whether or not some peeing issues I have are structural (related to previous treatments) or linked to OxyContin/opiates (I’ve had this issue after every operation, and it’s only stopped once I’ve managed to ween myself off the opiates).
The first session with the physio went well. She ran a number of tests and thought spinal cord compression was unlikely, although she’s not a trained doctor, and we had the session remotely over Zoom – so she couldn’t do hands-on-tests. At the end of the session, she gave me a series of exercises to work on and I felt really happy, But, things took a turn for the worse two days later when I travelled into central London to see the urologist. I was all over the place. Energy-less, wobbling a bit, and my right knee kept giving way – I almost fell over a couple of times on the underground - so, I called my wife and asked her to pick me up from the station. When I got home, I contacted my oncology team, and was told I was going to be admitted into the hospital straight away.
At the hospital everyone was convinced it was side effects of pembrolizumab. The physio did an extensive list of reaction tests on me, and didn’t think it was spinal chord compression. But when the MRI was done, that’s exactly what was revealed. I stayed in overnight, was loaded up with steroids and allowed to go home the following evening. Later, I was told I had 6 weeks to a short number of months of life left. We had to tell the kids again. Again, it was horrible. Then we told family and close friends. Horrible again. Every person you tell is a relationship that will soon end. You send them little messages thanking them for being in your life, for being there, and for sharing wonderful experiences. But, no matter how many words you write, they are never enough. Never.
Over the next week or so, we were visited by Macmillan, Occupational Therapy, and the District Nurse. Equipment started to be delivered – walking sticks, a wheelchair, wheelchair ramps, toilet seat height adjusters, chairs for the shower and bathroom, a lever to help me sit up in bed. A hospital bed will be delivered at the appropriate time. The steroids do their stuff and reduced the pain significantly, but, as ever, they gave me the roid rage, made me incredibly antsy, and forced me to eat like a pig (this is dexamethasone, which is always worse than prednisone for me). So I decided to come off them earlier than planned – as I said to the oncologist, I would rather have an increased fog from more fentanyl and be nice to my family, than stay on dexamethasone and feel like I want to kill them in the last part of my life. Unsurprisingly, she thought that was the right choice too
As I was feeling fairly good for a few days, it was decided that I would have the third cycle of pembrolizumab. If that sounds strange, my view was that I was strong enough to have it, the insurance company had agreed to pay for four cycles, and it might just help to get me to Christmas – so, why not? Unfortunately for me, the third cycle produced the worst side effects so far. The first two days, I could hardly walk – partly due to breathing issues, partly because the bottom half of my legs felt like lead weights. The part of my spine which has most tumour became very swollen, and the pain was excruciating. I had to add some OxyNorm to the fentanyl to get the pain down to a controllable level. The third day seemed like a miracle – no pain, feeling a little euphoric, but after that the days were fairly mixed in terms of pain and mobility. Yesterday – one week after the infusion – I woke up in the night completely drenched in sweat – it was like I’d been in a shower, so I changed my pjs and went back to sleep. When I woke up I was freezing cold – at one point my body temperature was 33°. An additional layer of pjs and a couple of hot water bottles pushed my temperature back up to the normal level but, when we spoke to the hospital emergency line, they told me to come in for a blood and urine tests. I declined – because the COVID risk of going into central London was so high – and got the tests done at home. But, a few days after that I started having real difficulty with my activity and breathing again – so much so that I called the clinic and was admitted again.
And that’s when things got interesting. First, a CT scan and x-ray of my chest show “stuff” in both my lungs - I’d noticed “crackling” in the left lung the day before, when I’d had another MRI, but nothing in the right. There was also an acid-reflux-like thing going on every time I breathed in deeply that usually set off a cough, so it was no real surprise that something showed up on the scans. But, as I’d had a lot of the other classic side effects of pembrolizumab i.e. swelling of the legs and feet, headaches, dark urine, unusual weakness, blurred vision, body aches and pains, numbness and tingling – particularly in the hands and feet, a new cough, ear congestion, fever, chills, joint or bone pain, redness of the eye, chest pain, difficulty speaking etc., I just assumed it would be another pembro side effect i.e. interstitial pneumonitis. But, the Hospital said it could be COVID-19 – as the symptoms are almost identical.
So, I was whisked off to the COVID ward to await the results of corona virus tests. Test one came back that evening ….. negative (I said it would, but apparently I don’t have as much medical knowledge as the doctors ). Test two came back late the next day… also negative. So, I am now, waiting for a PSMA scan before being transferred back to the non-COVID part of the hospital.
Interestingly, I spoke to my oncologist when she visited yesterday and she told me that the MRI scan showed the tumour around T6 had improved slightly whilst everything else was stable. I took that, linked with the fact that, in her experience, most of the people who do best on pembrolizumab are those with the worst side effects, either during, or after, the treatment as positive news. So, the PSMA scan today, combined with my recovery from where I am now will determine whether or not I have the last pembro infusion. I’m not fooling myself, I know my time left is limited, regardless of all of this. But, if it gets me through to a final Christmas with the family, I’ll take it. I’ll let you know how it all goes ….
A couple of days have passed since the PSMA scan. The results were, unsurprisingly, similar, if not identical, to those produced by the MRI. I’ve had blood, magnesium, steroids, hydration, antibiotics etc. pumped in to me, and the breathing is better, even though they have turned down the oxygen level I’ve been having since I arrived. Blood saturation is at the 92-94 level rather than the 88-90 level we started at. The doctor is talking about being able to go home at the weekend, possible with a supply of oxygen. The physio has started to take me for walks around the ward – I think we are going to try stairs tomorrow, which I expect to be an epic fail, but I’ve got to keep trying. My PSA from my latest blood test came in at 78, which was down from 87 on the previous reading, and a post radiotherapy peak of 98. I wasn’t expecting much of a fall as pembrolizumab apparently doesn’t typically have a large effect on that front, but there’s always that hope in the back of your mind, even when you’ve shot five of the six bullets from the Russian roulette gun, and you know the next one is live. And so, fellow warriors I will leave it there. Good luck to all of you, keep fighting, never give up. Thanks for all your help and support over the years. David.