Tag Archives: clinical trials

by | September 19, 2012 · 11:08 pm

Some good news at last…

Another post not about Saskia I’m afraid – but I have news I thought you would probably want to hear.

So today we attended the clinic at St George’s Hospital to get the results of my CT scan last week, to asses whether or not I have responded to the new chemotherapy I am now on. As before at the Royal Marsden, if the chemo was proving effective we would carry on with it, if not then we would stop the treatment (no point enduring the side effects if it’s not offering any benefit).

To be honest Sally and I were both expecting bad news – yes, my condition has been improving, but we have been disappointed so many times in the last six or seven months, that we dared not get our hopes up too much.

However, for once it turned out our pessimism was unfounded. After all the previous disappointments I can barely believe it, but for the first time since my recurrence was diagnosed in February, we left a post-scan clinic appointment with (mostly) good news.

I say ‘mostly’ (in the voice of Newt from Aliens – “They mostly come out at night… mostly”) as the scan did show that the disease had progressed ‘slightly’ (said in any old voice). However, there is a pretty big caveat to that slight progression.

When I moved to the team at St George’s Hospital from the Royal Marsden and started this chemo, a baseline CT scan wasn’t carried out for one reason or another (I was pretty unwell, and the priority was just to get me on some treatment). So prior to last week, my last scan was back in mid-May, eighteen weeks ago – this was therefore the only scan available to compare against, to judge whether the disease had progressed or not.

Of that eighteen week period between the two scans, I spent the first nine weeks not receiving any treatment, and generally having a bit of a rough time of it in terms of my physical condition (this was period I mostly spent lying half-asleep on the bed watching endless episodes of Frasier).

Then nine weeks ago I began these new treatments – and since then my condition has gradually improved, and I have been feeling progressively better.

Given the lack of a proper baseline scan at the point of starting the chemo we can only really speculate – but it seems possible that the disease progressed in that first nine week period while I was not receiving any treatment, and that the chemo has elicited a positive response over the last nine weeks, either halting the disease or causing it to regress.

As I say, the above is only speculation, but it seems logical, and fits with how I have felt physically over that time. The doctor also seemed willing to entertain the above theory as perfectly possible.

Either way, despite the slight progression we are going to be continuing with the chemo – for two reasons; firstly, given the uncertainty described above it’s very possible the chemo has been having a positive response; and secondly, I am about to begin another treatment, a cancer vaccine, which the doctor says works very well in conjunction with the chemo I am currently receiving (Carboplatin).

We have been hoping to get this vaccine for a couple of months now, but up to now it has been unavailable. It is not a treatment licensed on the NHS, and is currently going through clinical trials. As we have previously discovered, I would not be eligible to take part in a clinical trial as most do not permit patients with brain metastases. However, I am to receive the vaccine on a ‘named patient’ basis – which basically seems to mean that on recommendation of my consultant I can receive the vaccine outside of a trial environment, and free of charge (which is just as well – if I was paying it would be nine hundred pounds a consultation!!).

Unfortunately stocks of the vaccine were limited, and priority was given to the clinical trials. However, it seems that the vaccine is now available – today I signed the consent forms, and the plan is that I receive my first dose of the vaccine next week.

So that was further good news. All in all, this morning if someone had offered me slight disease progression, continuing with potentially effective chemo, and starting the vaccine treatment as the outcomes from today, I would have bitten their arm off. And it feels good to have had positive news for once – it renews our hope that things can go our way.

It’s still important to be realistic – this is just one ‘battle’ won in what is still an otherwise long and gruelling ‘war’. But it feels good to be on the score sheet at last with a victory.

So that’s about it for now. Chemo on Friday, Vaccine next week (hopefully), and a post about Saskia sometime soon.

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by | April 19, 2012 · 10:20 pm

That interesting post I mentioned…

I didn’t really expect to be writing on the blog today to be honest. Today was supposed to go something like this…

Wake up, and have a lazy morning. Then in the afternoon Sally and Saskia were due to go to a little ante-natal group party, while I had a quiet afternoon at home, incorporating a lesson from a photographer in how to post process my photos on the computer. So while a nice day, not exactly ‘interesting blog post’ material.

What actually happened bore very little resemblance to that. But before I go into detail I have to explain a bit of background context – some of you will know this already, some not. And I’m not really sure how to put it, so I’ll just say it – the cancer has spread to my brain (boo hiss!).

I actually found this out a while ago, just before I started the blog. In my first post, when I mentioned that I couldn’t go on the second clinical trial ‘due to the location of my cancer’… well that was why. Most clinical trials prohibit entry to patients with brain metastases. I don’t really remember why, and probably don’t want to know. But by agreeing to go on that trial I consented to having a CT scan of my brain, which showed multiple metastases (albeit small).

Obviously this was very hard to hear, and for one reason or another I didn’t really feel ready to disclose this news openly on the blog at that point in time. I’m not really sure why – perhaps I needed to come to terms with it myself first; or perhaps I just felt that this, on top of all the other news, was just too depressing a way to start the blog. Also, at that point I was asymptomatic (i.e. had no physical symptoms of the brain mets). So I decided to hold on to that news for the time being.

Well, as of today, I am no longer asymptomatic – what actually happened today was this…

Woke up at about 6am. By about 6:30ish I had developed a crushing headache on the left side of my head, like nothing I have ever experienced before (although I rarely suffer from headaches). I am already on paracetamol for my back pain, so couldn’t take any more of that – but I remembered that I had some codeine in a drawer, prescribed by my GP a while back in case I had any more attacks of stomach pain (mentioned in my first post). So I took the maximum dose of codeine I could, led back down, closed my eyes, and just waited for it to take effect. Which eventually, it did. After an hour or two the pain started to subside, and I think I dozed for a bit.

When I woke up and tried to get out of bed, I realised that something else was wrong – my vision wasn’t quite right. After much waving of my hands in front of my face I established that I was missing much of the peripheral vision in my right eye. If I held my right hand directly ahead of me, looked at it, and then moved my hand to the right (whilst still looking directly ahead), I only had to move my hand 10 to 20 degrees before it disappeared entirely from view. The same experiment with my left eye and hand showed I could still see my hand in my vision when it was out at 90 degrees, parallel with my shoulder.

I knew at this point that the brain mets were now playing up, and this wasn’t just a headache. We had been told that they could cause swelling and inflammation in the brain, resulting in headaches, vision problems, and possibly causing me to have a fit (an experience I am really not looking forward to). So we decided to phone the doctor at the Royal Marsden. What ensued was a flurry of calls between the Royal Marsden, my GP surgery, and Canterbury Hospital.

I was immediately prescribed steroids to try and reduce any swelling and inflammation. The Marsden also wanted an urgent CT scan of my head, but were happy for me to have this locally, rather than make another trip into London. A few more phone calls later (and a bit of clarification as to whether urgent meant ‘within a week’ or ‘today’) and I was called into Canterbury Hospital at half an hours notice for a CT scan of my head.

So Saskia was collected and sent on her way to her party as a temporary orphan, while Sally and I were kindly driven by a friend (also called Sally) to Canterbury for my scan. After a bit of waiting around, my scan was completed and we were driven home.

We don’t yet have any news on the scan results – they were being sent up to the Royal Marsden, and we are expecting to hear tomorrow. Assuming the scan shows just some swelling, I continue taking the steroids. If it shows ‘anything else’, we take a ‘different route’. I’m not really sure what ‘anything else’ and ‘different route’ involve at the moment.

So there we go. I’m currently sat on the bed, resting, typing, and quaffing steroids, paracetamol and codeine. The headache has mostly gone (or is suppressed by the painkillers), but there is a lingering sense of it. My vision is still not really improved – so far today I have walked into a hospital trolley, our sloping bedroom ceiling, and a door (repeatedly). Also I have stepped on the cat. It really is amazing how inconvenient it is – I keep losing items that are placed slightly to my right, because they just don’t appear in my field of vision.

I am sincerely hoping that I wake up in the morning able to see properly again, and preferably without a skull that feels like it wants to explode – I can do without all that.

Before I finish, I want to write a bit about the decision of whether or not to have the brain scan required for the clinical trial – just for the benefit of anyone reading this who might ever have to make a similar decision. When weighing up the pros and cons of the trial, we discussed this a lot. The Royal Marsden tend to adopt a policy (for melanoma at least) of not scanning the brain unless a patient actually shows symptoms of brain mets (even though melanoma commonly spreads to the brain). Which might sound strange, but everything they do is based on sound logic and reason. I’m not going to try and explain that logic or reason, as I don’t consider myself aware enough and don’t want to risk misrepresenting them.

We questioned whether or not we wanted to know if the cancer was in the brain and to what extent – were we setting ourselves up for another fall? What could be done if it was found? We were warned that if the scan showed anything, I would no longer legally be able to drive. In the end we decided that the clinical trial was ‘the fighters choice’, and therefore accepted the brain scan as part and parcel of the entry requirements.

As it turned out we did get bad news – and it was tough to deal with. However, I am glad we made the decision that we did. Today has been a crap day, that’s for sure – but at least we knew it could be coming, and so were slightly prepared for it. We had already dealt with the news, so today has just involved dealing with symptoms. I cannot imagine how much worse today would have been if we’d had to deal with the realisation that the cancer was in my brain, at the same time as having to deal with the first arrival of symptoms. We knew very early what was up, and were able to act quickly – as were the various medical professionals involved. Another advantage is that the Marsden have a scan from a month ago to compare this latest scan against.

That doesn’t mean this decision would be right for everyone – we’re all different. But I just wanted to offer an insight into our particular experience – an insight which would have been useful to us back when making the decision ourselves.

Finally, some thank yous; to all the medical staff involved in organising and carrying out my treatment today; to Sally for driving us to and from the hospital and remaining on standby should we have needed to go to London; Caroline for being on Saskia standby this morning; to Janine for collecting Saskia, and all the NCT girls for looking after her; and to my Mum for driving up here at short notice to be on standby should we need to go to London tomorrow.

Right, so there we are. I’ve learnt an important lesson today – never promise to make your next post interesting, because you might get what you ask for. In fact I hope my next post is complete and utter tedium – perhaps about the finer points of how libraries organise their books on shelves, and the intricacies of those little labels with all the numbers and decimal places on the spines of the books.

Sorry for any typos or errors – but as I can only half see, I’m sure you will let me off.

P.S. In the midst of our flurry of phone calls this morning, Sally’s phone died (awesome timing!) – she could see she had received some texts, but could not read them. Subsequently this afternoon it appears to have given up the ghost entirely. So if anyone wants to contact Sally please be aware of that. Currently via e-mail, landline, or me are the best options. I will post again when we have it sorted.

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by | March 28, 2012 · 10:35 pm

The beginning of a journey…

Welcome.

I never really thought of myself as someone who would keep a blog – to be honest I couldn’t think that my life or opinions were interesting enough to warrant documenting for the world to read. I could have ranted endlessly about the Daily Mail, but that would have got boring after a while (for you I imagine, probably not for me).

But in the last month or so things have suddenly got a lot more interesting, but unfortunately not in a good way – I have been diagnosed again with cancer.

Some of you may know my history – almost 5 years ago I was found to have a malignant melanoma (a form of skin cancer) on my left shoulder. I was 27 years old, otherwise generally healthy, and had never been near a sunbed in my life. The odd bit of sunburn as a teenager while prancing round Cornwall trying to become a surfer, but nothing major.

It was surgically removed, and after a lot of debate (for about six months) between doctors as to whether it had spread, I was given the ‘all clear’ and sent home.

Two years later it was detected in a single lymph node under my left arm. I was promptly back in for surgery, and had all the lymph nodes from my left armpit removed. Some more scans later, and I was again given the ‘all clear’ (albeit qualified with ‘as far as we can tell’).

The three years since then have been characterised by worries about recurrence, trips to various hospitals for scans and biopsies on various innocent lumps and bumps, and wondering whether I was becoming paranoid and beginning to annoy the doctors with questions about lumps on my testicles.

So in January this year, when I started to develop some lower back pain, I worried about cancer. But I told myself I was being paranoid, and put it down to having a new baby – lifting her up, hauling prams in and out of cars, bending over doing her bath and changing nappies, etc. So much so that I nearly didn’t mention it at my six monthly check up at the Royal Marsden (for those who don’t know, generally ace cancer hospital in London – one of the best places in the country).

In the end I did mention it, just in passing I hoped…

“Bad back? No, that won’t be cancer, probably something like a new baby or something”.

“Great, thanks Doc, see you in another six months”.

Unfortunately the conversation didn’t go quite like that. An MRI on my back and a CT of the rest of me later, and in late February I was told it was back, and had brought friends to play this time – on my spine, in my liver, lungs and spleen (what does a spleen actually even do?).

This news obviously came as a massive blow, and the weeks since then have been a real roller-coaster (and I don’t like roller-coasters!). I won’t bore you with all the details, but in short I had just picked myself up from the knock of the initial news, when I got more bad news – I couldn’t go on a clinical trial of a promising new drug as my melanoma didn’t have the right gene mutation.

Ok, pick myself up and get positive again, there’s another trial I can go on. Except that a week later (last week) I was the told I can’t go on that one either due to the location of my cancer – another blow to pick myself up from. The only treatment option available to me (at present) is the standard chemotherapy treatment for melanoma.

So that’s where we are. I started chemotherapy treatment Monday (two days ago). One silver lining of being on the standard treatment is that it is apparently relatively well tolerated. The infusion of the chemo only took about an hour, into a cannula in my arm. And other than a slightly foggy feeling and a few hot flushes on the train home, since then I have felt fine. No nausea, tiredness, sickness (they give you anti-sickness meds). There might be other side effects to come later in the cycle (each infusion and the following weeks leading up to the next infusion is known as a ‘cycle’), but so far so good.

Then in three weeks I am back in for my second infusion of chemo . Three weeks on from then I have another scan. If the chemo is working then I carry on for another four cycles – if not then I come off it and we try something else.

To be honest after all the trips I have had to London in the last month or so for scans and results it’s just nice to know that I don’t have to go back for three weeks.

So there we are – cancer has motivated me to become a ‘blogger’. Why?

Well in all the turmoil and upheaval of the last month it’s been difficult just keeping on top of everyday life – Saskia, the house, etc (fortunately I am currently signed off work). In the course of all that I have been relaying the news to various people – but I knew there were many good friends who I had not come across in day-to-day life who had no idea what was going on. Hence, the ‘blog‘. I figured this would be a great way to disseminate news and keep people up to date, without me having to say / type the same thing again and again – and for people to follow my progress, leave messages of support, etc (or abuse if you feel that way inclined).

Don’t worry, I’ll try not to make it all about cancer. I’ll put in nice stuff as well – news and photos of Saskia, other photos, and just general news of what we have been up to. The cancer is the motivator for starting this blog, but will not be the sole focus. It’s important to focus on the positive as well.

Speaking of positive – despite all the recent bad news and stress of the last month I am remaining fully positive that I will beat this. As far as I can see that’s the only way to fight this battle. Not long after the first set of bad news, I came down with a chest infection. Then a few days after the bad news about not being able to go on the first trial, I had several attacks (spread over four days) days of an excruciating stomach pain, lasting hours at a time – so bad that the first time I ended up going to A&E in an ambulance at 4am in the morning. The doctor in A&E, my GP and my gastro nurse put these stomach pains down to excess stress due to the cancer diagnosis.

While horrible at the time, these experiences were a clear demonstration and reminder of the effect that the mind and mental state can have on physical well being. If I get down and depressed my body will give me even more crap to deal with. So I figure I can turn this to my advantage – by keeping a positive attitude I minimise both mental and physical stress, hopefully minimise chemo side effects, and put myself in the best possible state of mind to beat this.

There is every reason to stay positive – there seems to be nothing to be gained by sinking into negative thoughts.

Right, I think I will end this post here. I have (believe it or not!) more to write. I haven’t yet touched on the amazing support and generosity we have received from family and friends in the last month.

But it’s late, and I’ve written a lot today, so I will continue tomorrow.

Bye for now.

P.S. This blog is also heavily inspired by a similar blog kept by a guy called Ezra in New York, who has been fighting colon cancer (hopefully, it looks successfully). It would be wrong of me not to credit him for his inspiration, so for anyone who wants to take a look, I have copied the link below. It’s a great read, and he is a wonderfully honest and funny writer (as well as good photographer, bike builder, and cook). So I would fully recommend it. You might also pick up some decent recipes! Thanks to Dan Morse for directing me to his blog.

Link > http://www.fastboycycles.com/teachingcancertocry/

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