Tag Archives: vaccine

Vaccinations done – next up, flea treatment and worming…

So yesterday we journeyed into London again to receive my first dose of the cancer vaccine. Train followed by taxi took us to The London Clinic Cancer Centre – a very posh independently owned hospital right in the centre of London.

Upon entering the building Sally and I finally felt like our rightful status had been recognised. This was the kind of place we belonged – light, spacious, airy, big white leather sofas, porters who would hail a cab for you in case you were too lazy or important to lift your own arm (yes, we did take advantage of this service).

As I registered at the front desk I noticed a little sign…

“All patients receiving oncology treatment must submit a deposit of £30,000”.

Unfortunately I didn’t have the full amount right there and then (having already broken into my last £30,000 to pay for the train and taxi). But I didn’t need to leave a deposit – I have been granted charitable funding via The London Clinic, and therefore receive the treatment free of charge. We’re not really sure how or why I have been awarded this funding – our consultant seems to have handled that side of things, all I did was sign a form that I didn’t read properly. So I guess we owe him a big thank you.

Once we had finished registration we took the lifts up to the ward. When I say ‘ward’, it was not like any other hospital ward I have been in – again, light, spacious, airy, and spotlessly clean and tidy. I was shown to an enormous futuristic looking white chair, where we were served mineral water by a waitress.

After a bit of a wait a doctor came along with the vaccination injection. The actual administration of the vaccine was very quick and simple, just a small painless injection into the upper arm. We waited around for a little while in case I had some kind of adverse reaction, before starting the journey home.

We were told the vaccine was generally well tolerated, with the most frequent side effects being irritation around the injection site, and perhaps experiencing flu-like symptoms in the day or two after the injection. Well so far I’ve not noticed any adverse effects, so will hopefully continue to tolerate it well.

It’s nice when treatments are so well tolerated, as it removes all the ‘treatment vs quality of life’ discussions and value judgements. You can just go for it and hope it works, but feel safe in the knowledge that you haven’t lost much if it doesn’t.

So that’s about it for my vaccine experience. I go back in two weeks for my second dose, and at some point after that I’ll have a scan to see how all these treatments are doing.

But rather than finish there I thought I’d write a bit about the vaccine itself, as a cancer ‘vaccine’ is probably an unfamiliar concept to many people (it was to me up until a couple of months ago). I will mostly be plagiarising this next section from the vaccine leaflet we were given… mostly… (yes, it’s Newt from Aliens again).

Vaccination is a form of immunotherapy. Generally the purpose of vaccination is to elicit an immune response where none previously existed. Taking flu for example – put simplistically (because my understanding is simplistic!) a small amount of the flu virus (perhaps weakened or deactivated) is injected into the patient. The patient’s immune system then forms antibodies to be able to fight off that virus. Should the patient encounter the virus in future, their immune system already has the antibodies required to fight off the virus and prevent the patient getting ill.

This is where the idea of a cancer vaccine sounds strange – the idea of injecting someone with cancer cells. Well fortunately the vaccine doesn’t actually contain cancer cells, instead containing a heat-killed bacteria.

In the mid-nineteenth century it was noted by a number of doctors that infection with certain bacterial organisms seemed to have a beneficial effect on the treatment of certain cancers. Doctors such as William Coley used combinations of bacteria strains (known as Coley’s toxins) injected directly into tumours to treat cancers. During studies it was found that the BCG vaccine was found to have positive effects on certain patients with lung cancer and malignant melanoma. However, these approaches were replaced with the advent of chemotherapy and radiotherapy.

Recently there seems to have been a renewal of interest in the immunotherapy approach (there was an article in the Telegraph or Times recently about Coley’s toxins, in which our consultant was quoted). The theory is that many diseases and cancers are characterised by an imbalance or malfunction in the immune system, allowing cancer cells not only to survive, but to grow unchecked. Melanoma in particular is thought to have a large immune component – which would make sense, given that we already know that my immune system is a bit screwy, hence my ulcerative colitis.

The theory is that the vaccine can help to restore this imbalance in the immune system, that it might restore the body’s ability to have an appropriate response in conditions where it has been compromised, such as cancer. In effect we hope that the vaccine will boost the immune system, and direct it towards attacking the cancer.

Initial studies have shown that the vaccine may have therapeutic benefits and has the potential to complement existing and emerging therapies. It is believed that in some cases it may be possible to induce a state of equilibrium with the cancer so that a patient lives with the disease, while effectively controlling it.

So there we go, that’s my ‘vaccine summary’. Obviously it’s early days in terms of the research, but it has apparently shown very promising results in early trials, and is in further trials now. So it’s very exciting to be receiving this treatment, and we are lucky in that I haven’t had to sign up to a trial to get it. Again, I’m not really sure how or why I am in this fortunate position, it’s down to our consultant again – but I’m certainly not complaining!

That’s it for now – I will keep you updated with any further news.

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Bad novelty slippers…

Hi all, I thought it was about time I gave you a little update on recent events.

The last few weeks have been a bit of a drag though unfortunately, for several reasons.

Firstly, about a fortnight ago I fell down the stairs in quite spectacular fashion, with one leg out in front of me, the other trailing behind me. There was a loud ‘snap’, which at first I thought was my trailing leg, but thankfully turned out to be one of the bannister uprights breaking. Given the height and awkward manner of my fall I was quite lucky not to break something other than the house.

What I did manage was to scrape a big patch of skin from my left foot, just above my big toe – right where the strap on my flip-flops sits. I have been wearing flip-flops all summer because; firstly, I like flip-flops; and secondly, with my back I couldn’t bend down to tie shoelaces. Only with a big open wound on my foot I could no longer wear shoes or flip-flops – I did try dressing it and going out one day, but it just aggravated the wound and set the healing back (as well as letting an infection get in there).

So regardless of cancer, this time due to my own clumsiness (and some lethal novelty slippers) I have mostly been confined to limping round the house, willing my foot to heal so I can actually don some form of footwear and go outside – which has been a bit tedious.

Having said that, it was nice in a way to have some enforced rest, as the cumulative effect of the chemo cycles seems to be taking it’s toll on my energy levels. I’m still suffering with dizzy spells, headaches and ‘near fainting experiences’. We think this is due at least in part to anemia and iron deficiency caused by the chemo, perhaps in combination with something called ‘postural hypotension’ (basically a drop in blood pressure and blood supply to the brain when you move from sitting or lying to standing). The effects are usually short-lived, but it’s becoming more and more regular – and the headaches have started cropping up when I am sitting or lying still.

The chemo also seems to be screwing up my veins – I have always had fairly ‘good’ veins, with nurses never struggling with blood tests or putting in a cannula. However, for cycle four of the chemo it took three nurses five attempts to get a cannula into me – which was no fun from where I was sitting I can tell you. Apparently the chemo can scar the inside of the veins and make them brittle, so perhaps there is some kind of negative effect on my circulation contributing to the feeling faint and headaches.

Last week the enforced rest came to an end unfortunately, with four hospital appointments in four consecutive days (including two days in London), which was fairly exhausting. Fortunately my foot had healed just about enough from my stair-diving antics for me to be able to limp around the various hospitals. I had my fifth cycle of the chemo on Friday – after we had driven back from London Sally dropped me outside the house, intending then to go and park the car. Unfortunately as soon as I got out of the car I had a particularly severe fainting moment and collapsed in the middle of the road, convulsing and breathing heavily.

I imagine it looked like a seizure, but I don’t think it was. I was conscious and aware of what was happening, and it just felt like an extreme version of my previous feeling faint episodes. When the worst of it had passed Sally and a kindly passer-by helped me into the house – once I was sat down again I was fine. But I think it gave Sally a bit of a scare. That’s the second time that I have had an extreme episode directly after chemo, so we will have to bear that in mind for the next cycle.

So yes, in summary the last few weeks haven’t been great in terms of my energy levels, or getting out and about anywhere other than hospitals.

This Wednesday we travel to London (yet again) for my first dose of the cancer vaccine – the final piece in my new(ish) treatment plan. As I have mentioned previously we have been waiting for this vaccine for a few months – it finally became available a couple of weeks ago, but despite this we have had two recent appointments for the first treatment cancelled –  so fingers crossed that it will actually go ahead this week.

Supposedly it works well in partnership with the chemo I am on, so we’re glad it’s finally available and we’re keen to start as soon as possible – another branch on my cancer beating stick!

To finish on a lighter note, I found something which made me laugh a bit, and I thought I’d share with you. In the background workings of the blog you can see what people typed into Google (other search engines are available) to arrive at the blog. So in most cases it was some variant of the blog title, or ‘Ben Edge Cancer Blog’, or something similar.

But my personal favourite by some margin, was ‘herbal solution for Weebles’. I really would love to know what that person was actually looking for – perhaps some kind of herbal ‘final solution’? Whilst I am not keen on Weebles, I certainly wouldn’t wish that upon them.

That’s it for now – I will report back after the vaccine.

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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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