Lemtrada Round 1

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The Lemtrada decision – treatment minus three months

For me, despite all the vast wealth of opinions, reports, studies, blogs and pamphlets available, my decision to go-ahead with Lemtrada was largely based on the act of the drama that was my 30 minute meeting with my consultant. He was very keen that the decision be ‘mine’ – so I questioned and questioned him about the risks, and the benefits, and then signed-up for this chemotherapy treatment…. soberly so, but confident enough that I had tried to make a decision as dispassionately as possible, about a subject that is just about as emotive, or passionate, as they come.

Feeling now, as I do, so much better than earlier in the year, it felt odd signing up to a course of “Lemtrada” treatment in a few months time. This is a mild chemotherapy designed to modify my misfiring immune system. It will involve a week in hospital; probably plus several weeks of illness afterwards (and the very real risk of some serious side-effects). But in making the decision to go-ahead I only had to think back a couple of weeks to the day I lost the ability to walk. I might be feeling good now, but there’s something going on in my body that I need to take action to stop.

Trying to understand, yet alone relaying, exactly how Lemtrada works gets me into cognitive deep waters – so probably best just to summarise its processes as a “re-booting” of the immune system. I can liken this to a return to ground-zero – like switching off a frozen laptop – when it turns back on again, the theory is that the bugs will have disappeared. The magic of the human body, or I guess of the laptop in my example above – is that the user doesn’t need to understand how this “fix” happens… it just happens, out of sight, hidden deep within the inner machinations of a body’s atoms, molecules and DNA.

Because I, the patient, cannot truly get my head around the exact details of immunity-replenishment (I soon get lost when told that Lemtrada will be attacking my lymphocytes, monocytes, some dendritic cell populations and, to a lesser degree, natural killer (NK) cells and other leukocytes), I have had to rely on the guidance of my (trusted) neurological consultant, coupled with a bit of high level, largely web-based, research. The problem is that the guidance is not black and white. The treatment has the risk of some potentially very serious side-effects – the decision to commit has to be balancing act between risk and reward; cost versus benefit. It becomes an “elective” medical procedure (e.g. one made by choice) rather than an “acute” one.

At the highest level:

The “pros” are based upon the analysis of large data-pools which show that (statistically) MS patients are likely to suffer fewer relapses post-Lemtrada, and have decelerated disability scores – both, very roughly, by a factor of 50% [MS Society].

The “cons”, again, are probability-based. The “chances” of thyroid dysfunction are still ~40% [MS Society]; the risk of something more serious – you can’t get more serious than death – are small, but not zero. More minor side-effects are much more likely, but I still take the view that, if these are short-lived, I can tolerate them if they’re offset by long-term benefits.

The web is a dangerous place to try and research ‘science’. I quickly happened across a blog written by a patient just starting their first course of Lemtrada: “I’m nervous because there’s 1 in a 1000 chance of me dying because of this treatment” [my first reaction was that this must be an ill-informed statistic]; and others which discussed the risks in more heart-felt ways: “I want to be around to see my children grow up and have children of their own. If I have to attend weddings and the births of grandchildren from a wheelchair, that is my fate. But I can’t quite accept the thought of dying from my MS treatment and missing all of those things.”

In summary, the most striking points from my internet trawling were:

Firstly, how unlikely you are to actually die, either directly or indirectly from Lemtrada.

The results of clinical trials showed that more patients died having been hit by cars, or by a train, or from motorbike accidents, than by any side-effects [Alz. Advisory Committee Briefing Document BA103948] – (in fact, these, and other such results, did make me ponder quite how many causes of death seem to be lurking around us at every turn!) That said, there were 2 (indirect) deaths during trials (from secondary ITP and sepsis). In fact, ~3% of patients [again, MS Society] suffered from ITP (immune thrombocytopenia) which, to put it bluntly, kills you if you don’t treat it quickly. To put this in perspective, very roughly patients in the clinical trials suffered a similar mortality rate as mothers giving birth in India or Cambodia (to give two random examples) in 2015.

Secondly, although I knew that Lemtrada was a “new” drug, I was surprised at how small these pools of statistical test-data actually were – and how recent.

The major drug trials incorporated hundreds of patients worldwide (not thousands) – and many ‘secondary’ trials only involved tens of patients. Of course, any information regards long-term effects are not going to be reliable for many years – and several critical trials examining secondary risk factors are still only at their early stages.

A bit more internet-based research and suddenly that “1-in-1000” throw-away statistic I quoted above (and initially dismissed out of hand) doesn’t seem so far-fetched: 2 deaths were reported during the clinic trials of a couple of thousand – from caused by ITP, one by a listeria infection. The risk of ITP is now being countered by monthly blood-tests for all Lemtrada patients (which I’ll need to have done for the next 4 years); listeria by reinforced advice regards post-treatment diet and hygiene.

Thirdly, as a ‘Lemtrada’ patient it is important to understand the risks and the side effects that you’re letting yourself in for.

To try and summarise the NHS (and related) blerb is not easy – but essentially the most important percentages are as follows:

  • 2% of patients suffer, potentially very serious, autoimmune conditions with serious sounding names: immune thrombocytopenia and anti-glomerular basement membrane disease. But these risks should be mitigated by monthly blood tests, careful monitoring and an awareness of tell-tales symptoms;
  • 34% suffer thyroid disorders. Initially this figure sounds scarily high… but should even the worst of these precipitate, again, these should be identified via the monthly blood tests, and would then be combated via a daily pill. Although no one would chose to have to take a daily medication for the rest of your life, this would seem to me to be a bearable solution;
  • 71% have post-delivery infections (17% suffer Herpes (which, I now know, is not just a STD)); and
  • there is also a small increased risk of lymphoproliferative disorders, thyroid cancer, and melanoma

In summary: 1-in-50 patients suffer extremely serious side-effects (although these should be “caught” early enough with careful through post-treatment blood-testing); over a third suffer serious side-effects, which then need to be managed with new drugs (which need to be taken for the rest of your life); and a majority of patients are inflicted with post-transfusion infections of some kind of another (to varying degrees of severity).

None of these are things to get too happy about – my ready acceptance of these risks should go to show how heavily the spectre of MS weighs upon me.

To summarise my decision:

My viewpoint is that, amongst all these statistics (lies, damn lies and random web-based blogs), I must remember the main pillars of my confidence: the drug has been sanctioned for use in the UK by “NICE” – so it’s now approved by the NHS; the FDA has approved it in the United States of America; and the EMA within Europe.

I must remember that the option of Lemtrada is a blessing, not a curse.

It is a “good” drug, here to help me.

I often think how lucky I am to have been diagnosed now – rather than 10 years ago when I would have been advised to follow a healthy diet – yet, how unlucky I am not to have been diagnosed in 10 years time, by when the current leaps and bounds in stem-cell technologies may have found a risk-free cure.

The NHS, and the tax-payer, is putting its faith in Lemtrada, and in me: a daily dose of the drug costs £7,045. The full (double) treatment costs £57,000.

I hope I can look forward to many years of great health so I can start repaying some of that debt.

 

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The Lemtrada decision – treatment minus one day

At times this year, I have felt as healthy as I ever have been.

I’ve had some wonderful times – with my family; running about our new garden with my boys; and out on my bike.

Cycling-wise, I’ve ridden in time-trials; hill races; 600km audaxes; and up and down some of the most famous climbs in the Alps. I’ve cycled 10,000 miles through hail, heavy winds, sun and rain; on ice, trails, tracks and roads; and through congested city centres and across deserted plains.

But in the 7 months that have passed since my diagnosis, I have only been consistently “well” for perhaps 7-8 weeks: I was happy and healthy in June; then again in September. Beyond that, most months have been patchy at best. I have had to spend far too much time being ill. There hasn’t been a single day since February that I haven’t suffered from residual pins and needles and sensations of tingling numbness. For two (perhaps three) periods I’ve been unable to walk properly and have struggled with stairs and uneven surfaces. There were a couple of times I found myself struggling to sit up. I’ve briefly lost control of various muscles, and my balance; and have been scared by intermittent issues with my eyesight.

My diary reveals that I have missed 20 (twenty!) days of work since February through MS-related (unproven) illnesses and malaise. Career-wise this has not been ideal, but this is immaterial; it is the stresses on marital and family life that have been the most significant.

The identification of relapses is an art not a science,  but it feels as though I’ve been amassing new MS symptoms with reckless abandon. I’ve had 4 (perhaps now 5, see below) relapses in the last 7 months. The average figure for annualised relapses for MS patients is about 0.3 – I don’t have a calculator but I’ve exceeded this by some 30 times.

 

This last fortnight has removed any doubts I might have had about my treatment. I have had another 4 days off work (during a critical period of the project I was working on); two new MS symptoms (that have lasted over 48 hours each so classify (by definition) as additional “MS relapses”; and I’m suffering from an exhausting fatigue that has become all too familiar to me.  I’ve been irritable at home and at work despite sleeping 11 hours a night. This latest period of “lassitude” has lasted 8 days (it’s nearly always 7 – 10) – like clockwork.

In fact, for all the ups and downs of the last year, this last fortnight has been when I have felt the most “beaten”. By contrast, previous lows (bar a couple) have been offset by a surge of adrenelin (initial diagnosis included) – they have almost increased my fight, rather than reduced it. But this last relapse has just been depressing. I’ve been stuck in bed, frustrated. I had to miss my last cycling event of the year – which I had been tentatively training for – and my one riposte, my new MS Diet, has suddenly seemed inadequate and impotent. I’ve caught myself thinking, if I’m going to go down, I might as well go down stuffing myself with delicious fatty burgers and thick chocolate shakes; descending alpine passes on my bike stopping for creamy slices of rich carrot cakes at every turn.

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All-in-all this is a good time for my reinforcements to arrive – just when I appear to be flagging.

So the “Lemtrada” drugs get rolled in.

I see it as a dirty, great big cannon. It’s only got 1 bullet. This isn’t a treatment you do twice.

So I hope it aims carefully and with certainty.

Right between MS’s eyes.

So.  Let the games begin.

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Lemtrada.

The drug’s administration is not unpleasant per se (essentially I’ll be connected to an IV drip for a week), but it’s not without its risks and side effects – and it results in an extreme vulnerability to infection in its immediate aftermath.

I approach my treatment convinced that it is the best option for me, but not without anxiety.

So, off to The Brain Centre, Southmeads Hospital.

Let’s get it done.

 

 

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Bounce-back-ability

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I found the immediate aftermath of my MS diagnosis a fairly confusing time as I tried to make sense of what it meant for my life and for my future. It was suggested that I start some sort of blog to assemble all my thoughts in a therapeutic way. As I was struggling to find anything in the MS literature that tallied with my interests, hobbies and lifestyle, a blog entitled “CyclingwithMS” seemed to make sense.

Since then it been heartening to receive words of support from family, friends and even interested strangers and other cyclists. One message that has been repeated is that some of the challenges I’ve faced as a cyclist should stand me in better stead for the MS hurdles that lie ahead.

I hope so.

My experiences this year have made me ponder a bit more about what resilience, or mental strength, mean. The ability to keep on (and on), without breaking in the face of an adversity, pain or challenge is certainly a strength of sorts.

But I am increasingly of the belief that it is an ability to carry on after a beating – to keep going after defeat – that is a different kind of strength, but probably one that will become more important for me going forwards. I’m going to have to learn to adjust strategies; to adapt; and to evolve – so that if one approach fails, I can take a deep breath and try another.

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My colleague at work has just seen his son through training for the Marines. He relays that one night-hike physically broke the group. They arrived to their destination exhausted and hungry. They were given 5 minutes rest then told to get up and repeat. Some dusted themselves down and set off – although probably quite slowly… they would have done so again, and again; others stopped right there and threw in the towel.

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With my chemotherapy due to start in 2 weeks time, today I had a pre-treatment appointment.

My progress over the last 6 months was discussed and reviewed. On one side, my efforts at a new diet; more focus on getting the right rest/sleep; and an actual awareness of my condition; versus the knowledge that, just this last fortnight, I’ve been suffering a couple of most unwanted, new symptoms….

The result? 4 new relapses were suggested since my initial diagnosis in March. One relapse a year signifies an MS condition that is in advance; 4 in 7 months is not good news. At all.

It suddenly felt as though I am losing this fight.

Left unchecked, this condition will get worse and worse. Onwards it seeps – if blocked in one direction, it expands in another. I almost immediately retreated mentally to what I am most desperate to preserve – <<ability to walk… ability to see….>> – both threatened this year. Both I do not wish to give up.

Almost time to unleash “Lemtrada”. A drug that 8 years ago didn’t exist. So fingers crossed for 2 weeks time. I need some heavier artillery. And to toughen up. I take inspiration from those who have faced a hundred times worse with a courage that I admire.

I know that MS is not a person. Not an object I can fight in a ring. It’s a function of a mis-firing immune system. Messages to the brain, molecules, biochemistry. Just science…. like the plankton in the sea, or the atoms in the sun. But seeing it as a foe whom I need to beat? That gives me more appetite for whatever might come. And makes me think I can win… so for now, I persist with this illusion.

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In “The Hustler” Eddie Felson (Paul Newman) plays a titanic game of 8-ball, head-to-head against a legend of the game, Minnesota Fats.

As the frames (and hours) tick past it becomes less a battle of talent, more one of focus and of will: (perhaps the more talented player) Paul Newman undoes his top button and begins to look more and more dishevelled, speech slurring with whiskey; whilst Minnesota Fats changes into a freshly pressed shirt, re-slickens his hair and dusts himself down, ready to go again. He was in it, not for the battle, but for the war – for that was what needed to be won.

October: H-ill Season

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October.

Suddenly the mornings are getting dark. And colder.

As I commute to work, I’m now setting off in moonlight rather than daylight.

This is not my favourite month.

It is also the time of year known to Bristol’s cyclists as “Hill Climbing Season”. There are a series of annual hill races, short sharp sprints against the clock to round off the cycling year. They’re easy events to enter: they’re run “time trial” style, one rider at a time (so you never get left behind); and no one really notices what times you post (so there’s not usually any embarrassment necessary – although my times do their best!) I’ve tried to enter 3 or 4 of them every year – (to participate rather than to compete) – but note that I had to be careful with my wording: I say “tried to enter” because October is also my own personal “Ill Season”.

Before I had my MS diagnosis I’d had 4-5 years of intermittent bad health. I became so frustrated I had started to keep an “illness diary” in an attempt to try and find rhyme or reason behind these apparently unconnected bouts of malaise. These diaries now form damning evidence for the crap-ness of October. I took to highlighting periods of time when I was either off work; or unable to cycle. I can now see that in every single October for 4 years I missed at least 5 days of work through illness (“bed bound”). Over the same time period, I had highlighted an additional 16 days when I was too ill to get on my bike (“chair bound”). So, historically, in October I’ve been spending 1 day in every 2 either bed bound or house bound.

The fact that I log all my bike rides on the website “Strava” just adds to this compelling evidence because I’m in the habit of adding “ride titles” which keep a record of what I was doing, with whom and where (I’ll pause for a moment for you to digest this geekiness…) With hindsight these past October Titles now seem to read like great big flashing MS warning lights: “Felt strangely lethargic on the bike today”; “Couldn’t get much power today, legs felt numb”; “Felt tired on the bike despite 12 hours sleep”; “Felt awful today, went straight home to bed”; and, what now seems like an MS classic, “Not sure what was going on today, felt as though I was losing feeling in my legs”.

Now I know that I have MS I’ve tried to work out why Octobers have been so bad. February/March are exactly the same. The pattern then seems to be that I am in relatively good health through the summer. I think I need a team of experts to look at this and unravel the clues – there seems as if there could be all sorts of reasons: from pure coincidence or psychosomatic winter-based depression; to vitamin d levels (which come from sunlight); or the simple prevalence of a new season’s minor bugs and colds which seem to hit me with such exaggeration.

With disappointing predictability, this last week saw my eldest son ill in bed with a fever and a heavy cold. My youngest was up all last night with his own terrible cough. And this weekend was the “West DC Hill Climb Weekend”: four hill climb races over the 2 days. I entered them all weeks ago. Predictably I woke up myself on Saturday morning feeling crap. I’d had what can only be described as remarkable “night sweats”, and felt dizzy with the sniffles and itches of an impending bug. Just as night follows day, I then registered 2 pretty slow times one after the other. Slower than my already modest times of last year.

Then on Sunday morning I woke up feeling great. I felt like an embarrassed hypochondriac after my concerns of the previous day, but then registered another 2 slow times for the day’s events…. <remember not to let MS become an excuse.>

Yep… welcome to October.

My chemotherapy treatment is due to start in 3 weeks. I need to remember that, some days, I should be happy to be at the start-line, still smiling, still riding. Who cares how fast you go.