Monday 24 September 2012

What was the first antibody treatment like?

A couple of weeks ago, I had the first dose of the antibody treatment (Brentuximab Vedotin) in one of the hospital wards; Having the antibody treatment there allowed me to be monitored more closely and over a longer period, just in case I had any kind of reaction to it and consequently needed to stay-in overnight. In total, it took about two and a half hours to administer intravenously (via IV), and I only needed to stay for another couple of hours afterwards before I could go home, as I was feeling fine. It was actually a long day at the hospital though, as I had the usual check-up routine to go through in the morning, and an x-ray shortly after lunch (just for comparison purposes at a later date), before starting the antibody treatment mid-afternoon.

As you may remember from an earlier post, I was expecting to spend maybe a day or two in the hospital ward, as that was how it was initially described to me, but that turned-out not to be necessary in the end, which was a bonus. The hospital where I'm being treated have to date only used this particular antibody treatment with three of their patients (including myself), and one of the others actually had it administered at another hospital, so it is still quite new to everyone really; I get the impression that until it has been used with a few more patients the best setting etc for this antibody treatment, in particular the first dose, is not really finalised/known.

It seems that the first dose of this antibody treatment is typically given a little differently to subsequent doses, i.e. more cautiously, as I was given some saline solution to ensure that I was well hydrated and the dose was administered at a slow speed initially, before gradually being increased to what will become the normal rate for subsequent doses; The rationale behind all of this being to reduce the severity of any reaction, thus enabling it to be treated more easily should that prove necessary. I was also given some other medications (a steroid, an antihistamine, and some paracetamol), which I will have with the subsequent doses too, as they help to minimise any reaction, as well as treat it should there actually be one.

The antihistamine did make me feel a bit drowsy for a couple of hours, but other than that I'm yet to notice any side effects from the antibody treatment, so in that respect it definitely beats any of the chemotherapy treatments that I've had to date. Of course, whether I will start to experience some side effects further down the line, only time will tell, but in the mean time it is just nice to have a treatment that doesn't make me feel worse than the disease. The real question though is whether it is actually killing those cancerous cells, which is hard to say when you feel fine, so unfortunately I won't know the answer to that one until I've had a number of doses, and further tests have been performed to assess how well it is working (if at all).

The plan going forward is for the remaining antibody treatments to be given as an outpatient, and the dose itself to be administered in half an hour without any saline solution beforehand, so hopefully that means I won't be spending anywhere near as much time in hospital for the next few months. Assuming the antibody treatment is working well enough, which will be judged based on the activity (or lack thereof) shown on the PET scan I will have after six doses, then a decision will be made about how many more doses I need to achieve the desired response, as well as to keep the disease under control whilst waiting for the Allogeneic (from a donor) Stem Cell Transplant. During that final stage of the treatment plan, I will get to spend plenty of time in hospital, so I can always look forward to that!

Monday 3 September 2012

How did I first find out I had cancer?

It's been about a week now since I found out that the antibody treatment was approved, so whilst I wait a few more days for the Brentuximab Vedotin to arrive at the hospital pharmacy and the actual administering to begin, I thought I'd rewind time a little and tell the story of how I was initially diagnosed with cancer; The story takes a bit of telling, so make sure you're sitting comfortably!

The G.P. Appointment

It was early December 2008 when I first started with symptoms, and because they all seemed like nothing at the time I pretty much just ignored them for a couple of months or so.  During that time, there were a couple of periods where I felt like I had picked-up a cold, so felt worse for a bit, but given it was winter that didn't seem all that unusual to me.  The only thing that was a bit unusual was that the colds seemed to take a couple of weeks for me to shrug off, i.e. longer than I'd normally expect.  Eventually I decided I needed to make an appointment to see my G.P. though, as it seemed like my body just wasn't going to sort this one out by itself, as the symptoms were gradually getting worse, albeit still pretty minor really.  Looking back, I should have made an appointment sooner, but I'd never been one for taking medication or seeing the G.P. etc, as historically things had always sorted themselves out, so it was easy to think I'll just give it a few more days and I'll be fine.

As it turned-out, my G.P. appointment was mid-morning on a Monday, so I went to work as normal and just popped-out for what I thought would be a short trip to the local G.P. and pharmacy.  I wasn't entirely wrong, as my G.P. did prescribe me some antibiotics, but after I had listed my symptoms and my G.P. had listened to my breathing, which incidentally highlighted that my pulse was a little high, I was also told I needed to make an appointment for a blood test and go for a chest x-ray.  I was a bit surprised by the need for a blood test and chest x-ray, as it kind of made it all sound a bit more serious than I thought, but the G.P. explained it was routine really, so not to be concerned.  The G.P. did also comment that my pulse being a little high could perhaps be explained by being anxious, and whilst I didn't really feel that way I did wonder whether the unusual breathing you are asked to do when being examined can lead to your pulse going up a bit, so I kind of just assumed it was that.

As requested, I arranged the blood test for a week or so later (the earliest appointment!), picked-up the antibiotics from the pharmacy, and headed-off to a local hospital to get the chest x-ray over and done with.  To my surprise, I was actually in and out the hospital in no time at all really, and even back at work just in time for lunch!  Other than a nurse jokingly saying that if she got a pound for every time a G.P. referred a patient with a lingering cough for a chest x-ray she could be living the high-life on an exotic beach somewhere, nothing was said to me at the hospital.  One thing that did amuse me at this point though was the idea that a blood test requires an appointment and a week or so wait, but pretty much any time you need irradiating you can just pop into a hospital for an x-ray!

The Symptoms

So, what were my symptoms, I hear you say?  Well, the first one that I noticed was a slight cough; It seemed to be triggered more by moving around than anything else, although jumps in temperature (e.g. going outside) did set it off too, but either way it would soon settle down again.  Later on, I found myself starting to itch a bit in the evening (mostly in the lower legs and abdomen, but also on my face too), and sometimes my sleep would be interrupted by night sweats (both myself and the covers would literally be wet).  It seemed like the night sweats were more likely to happen if I went to bed early, which I was now doing occasionally due to feeling more tired than usual in the evening.  During this period, I did also lose my appetite a bit, and consequently some weight, but I never really gave any thought to that, as being off your food is nothing unusual if you are not feeling your best.

The Chest X-Ray Results

I left work a bit late that evening, given the somewhat extended lunch break, and just as I got home my G.P. phoned me to tell me that an appointment had been made for me to see a specialist on Friday, as there was something showing-up on my chest x-ray that needed further investigation.  The G.P. wasn't really saying very much, so I asked whether it was something to be concerned about, and the answer was a pretty clear yes.  I did ask a couple of follow-up questions about whether I still needed to take the antibiotics and go for the blood test, to which the answer was no, but otherwise pretty much left it at that.  After hanging-up the phone I did pause for a couple of seconds and think to myself that really doesn't sound very good, but there was nothing I could do about it, and worrying certainly wasn't going to help, so I just put it aside and carried-on as normal for the rest of the week.

The Specialist Appointment

Friday soon arrived, and my appointment was early that morning, so I went straight from home.  The morning mostly consisted of sitting in one waiting area or another, as other than a blood test, getting weighed and having my height measured, I was really just in a queue to see one of the doctors.  As I looked around the waiting areas, I couldn't help but notice that the average age of the patients was probably at least twice that of my own, so I did feel like the odd one out.  At one point, I did speak to the lady sat next to me, and she explained that she had come along with her son, who was currently a few years post cancer treatment and doing fine, so I shouldn't worry about it all; The lady seemed nice, and her words were clearly well intentioned, but it did cross my mind that, as I was sat in the waiting room, I was kind of being informed I had cancer by a patient's mum!  As it happened, I also overheard a conversation between a couple of patients, one of whom was explaining that she had been diagnosed with Hodgkin's Lymphoma, for which a doctor had told her the front-line treatment cures around ninety percent of cases, hence I learnt a little about the side effects etc as they discussed their experiences - They mostly discussed two side effects that I never actually experienced myself though (nail changes and sore eyes), which I guess illustrates how these things tend to vary a bit.

Eventually, after a good couple of hours waiting, I was called into one of the consultation rooms, where a doctor and nurse introduced themselves.  The doctor: explained that I had been referred by my G.P. for further tests due to the abnormal looking chest x-ray; asked about my symptoms; listened to my breathing; checked my groin, under my arms and my neck for any lumps; and delivered the unfortunate "There's no easy way to tell you this!" speech.  I guess that speech always leads to a bit of an awkward moment, as patients' reactions no doubt vary wildly, but the first thought that crossed through my mind was that you've not really told me anything yet - I don't recollect the word cancer being explicitly used, although the implication was certainly there, as I guess until further tests were done and the results were back there was really only a strong suspicion (not a cast-iron certainty).  The doctor (and the nurse) went on to explain that I'd need to: have a bone marrow biopsy to check for any abnormalities (signs of cancer); a biopsy of the mass in my chest to determine what it is (the type of cancer); and a CT scan to get a much clearer image whilst also checking for any other masses.

You can read a couple of my earlier posts (if you haven't already) to find out about bone marrow biopsies and CT scans, so that just leaves the biopsy of the mass in my chest, which the doctor explained would involve a minor operation by a cardiothoracic surgeon, for which the details would be made clear once my admittance to one of the cardiothoracic wards could be arranged.  I had the bone marrow biopsy there and then, as although I was told it could well prove to be a particularly unpleasant experience, and that I could have it done another time if I wanted someone to come with me or I needed chance to take everything in, I thought I might as well get it out of the way.  That just left arrangements to be made for the CT scan and the biopsy of the mass in my chest.  In the mean time, whilst I waited for those appointments, I would just see the specialist on a weekly basis, so that I could be kept informed and have the opportunity to raise any concerns or ask questions etc.

There were a few other things to address, which didn't require the doctor's presence, hence the nurse and myself moved to another room to cover those.  It was mostly practical things such as exchanging contact details etc, but it also gave the nurse the opportunity to summarise what would happen next and check that I would be fine once I left the hospital - By fine, I mean both from an emotional and physical perspective, as it had obviously all been a bit sudden, and it seemed that the chest x-ray was particularly concerning to them due the size and location of the mass that it highlighted; There was a certain element of surprise that I wasn't a lot more symptomatic, so I think they wanted to ensure that someone was around to keep an eye on me.  The nurse did offer to inform my work that I wouldn't be coming in that day, but it was the last day for a few of my colleagues, due to redundancies, hence I declined the offer and went in anyway to wish them farewell etc.  Also, as it happened, I was living with my parents at the time and they were literally just about to board their flight back from a holiday in Tenerife, where they had been visiting my sister, so there was no-one at home anyway.

The Aftermath

By the time I left the hospital it was early afternoon, but I only had a short drive to work, so it didn't take long before I got there (and ate my lunch!).  As you might imagine, not much work was actually going-on, given it was a Friday afternoon, everyone had only recently got back from the local pub, and it was the last day for a few people, but once I passed on my news that pretty much put an end to any pretence of work that was still left hanging-on.  So, for the rest of the afternoon, we mostly just talked about the chaos that was likely to follow at work, given several members of the team were leaving, and I explained what was next for me in terms of the further tests etc.  I do remember one particular conversation quite clearly though, as whilst I was speculating about how the cardiothoracic surgeon would do the biopsy of the mass in my chest, i.e. was it the kind of thing that could be done with key-hole surgery, one colleague/friend joked that it would likely involve: slicing me wide-open with a knife; firing-up the chainsaw to crack-open my rib cage (prising them apart with a crowbar as necessary); delicately taking a small sample of the mass; and finally folding me back together and throwing-in a few stitches for good measure - It's always comforting to know that you can rely on your colleagues/friends to help put you at ease, and once I finished laughing and had pointed-out that cardiothoracic surgeons tend to prefer glue to stitches these days, there was nothing left to add!

As you may have guessed from reading between the lines, the diagnosis didn't really bother me, psychologically speaking, as I suppose I just assumed I'd have a bunch of tests, followed by some treatment, and that would be that; The idea that it might drag-on over a few years, never mind ever prove to be incurable/untreatable, didn't really seem like a possibility.  Having said that, I have always maintained that I think the diagnosis is harder for the immediate family than the patient, as whilst it may be a cold way of looking at it the treatment either works, in which case there is nothing to worry about, or it doesn't work, in which case the patient won't be around to worry.  In essence, it is those that are left behind that have to live with any unfortunate consequences, and it also those same people that often wish there was more they could do whilst the patient undergoes treatment.

Having informed my colleagues, said farewell to those that were leaving, and in doing so avoided any actual work that afternoon, it was now time to head home.  At this point, no-one else knew about the news I'd had (or even that I'd been to visit my G.P.), so the next thing that I had to look forward to was telling my parents, after picking them up from the airport later that evening.  I decided on my way to the airport that I wouldn't say anything about it until we got home, as my parents were still in holiday mode really, so would no doubt have stories they wanted to tell me, and it didn't really seem like a conversation to have whilst driving, so it wasn't until we were nearly home that I mentioned in passing that I had some news to tell them once we got in.  That decision did prove to make the initial greeting at the airport a bit awkward, as the first thing my mum asked me was whether I was okay, but I guess my smiling at the thought that even the best battle plans don't last five minutes on the battlefield nicely covered over any contradictory visual cues I gave away as I said I was fine.

Once we got home, and started getting the luggage out of the car, I was soon asked about the news; The comment that I made in passing had been ticking-over in my parents' heads more than I realised, as I later found out that my mum had been wondering whether her mum was perhaps not very well.  I explained what I had found out that week, and my parents both seemed to take the news pretty well really - Perhaps because I was calm/relaxed about it.  Neither of my parents slept very well that night though, and they did have a look in a medical encyclopedia, which we happened to have collecting dust on our bookshelf, to see whether that had any more insight to offer.  The nurse that I'd spoken to earlier that day had kindly given me her mobile number, just in case my parents had any questions etc, but it was pretty late by now, so it didn't really feel like an option.  Plus, if I'm honest, I don't think there was much more anyone could tell us at this point, as there were still further tests to be arranged.  That was probably why I decided not to say anything to the wider family until later on.