“Tonight.. in the corner of hope… representing the “light side” (as well as the entire human race)… is our newcomer and challenger…. “!Lemtrada!”.
Up against him – and long-time champion of the “dark side” – is the unbeaten, tour de force that is…. “!MS!”. He will be fighting tonight, of course, with a red light-saber that flickers with the evil flames of doom.”
“Lemtrada is an unknown quantity. Our sources suggest he’s a bit of a wild cannon – (certainly don’t allow contact with your children, domestic pets… or bare skin.)
But he certainly is a modern-day fighter: more “built” than “bred” – and has spent hours and hours in the lab perfecting his one-punch style. Rumours are that he’s been honed to deliver a single knock-out blow – so expect him to come out hard and early. He emerged onto our NHS radar as recently as 2014; so might well have some surprises (good and bad) up his sleeve.
His explosive strength is unquestioned; but does he have both the staying power and the self-control that will be needed?
Of course, we are all more familiar with MS. He has been around for over a century – and his stats speak for himself: undefeated; and apparently impregnable. The “unmoveable object”. His style is certainly not for the purists – he is attritional and steady; but he is unerring.
His greatest strength is his ability to absorb attacks – nothing seems to weaken his resolve. Past opponents have been able to slow him down, but he has an unparalleled ability to keep on his feet, recover and then to advance again when his opponents tire.
MS is more “ephemeral vapour” than man, so the struggle that Lemtrada is going to face is how to pin him down: if you focus on one area or symptom he has a brilliant knack of exploiting another.
In Lemtrada’s corner is his dedicated ring-man… me.
I have prepared him as best I can through a disciplined regime of “boring, broccoli-based diet”; but now, all I can do, is to supply him with the right drugs when he is suffering pain. Gabapentine, Prochlorperazine, Amitriptyline… boosted by steroids when required. I’ll be throwing my weight behind his every punch, and willing him on with my every fibre.
Lemtrada also has a strong following in the ringside seats. Row 1 sees my immediate family – but there are also clusters of old friends, fellow cyclists and patients, relatives and blog-readers, many of whom are tapping away on laptops and iphones to get their up to date fight-coverage.
The followers of MS are less vocal – many of them a ghastly mist of thoughts and fears. Their support is less passionate and unquestionably more… eerie. But it is always there, in the corner of your eye and sub-conscience. The first few rows see “Pins and Needles” and his gaggle of team-mates: “Hypersensitivity”; “Spasm”; and “Numbness”. This is just the family section though. Behind them, “Optic Neuritis”, “Secondary Infection” and “Vertigo” are keeping a careful watch. And, in the darkened back rows of the grandstand, in apparitions hauntingly reminiscent of swirling black holes, stand the dual threats of “Immobility” and “Cognitive Loss”. The boss men. They’re drinking pints of black tar and betting wads of dirty bank notes on people’s lives as they wait to see how this fight plays itself out.”
The Early Rounds
“Those in the know were prepared for an explosive start from Lemtrada. He’d been packaged up in a plastic sack since birth so was fresh, rested and ready.
But even Lemtrada’s most ardent followers will have been knocked back by the ferocity of his initial assault.
If anything it was too strong: vertigo, especially, seemed to sense a weakness.
However, 5 months on, his work seems to have become more stable. My role is to rein him in with repeated early nights and lunchtime naps; taking time off work when required to try and best channel his energies.
And we can now see some results from the first few rounds.
Historically, between 1st January and 1st April, MS has reeked his worst damage. The “days of illness” that he has caused during these 3 months are:
2015: 12 days
2014: 13 days
2013: 14 days
2012: 10 days
But, this year, Lemtrada seems to have ducked and dived and avoided his worst.
In 2016 the figure so far has been 2.
This is buoying early news indeed.
They still feel like nervous times though – whenever Lemtrada lets his guard down there a little flurry of body jabs from “Pins and Needles” and “Numbness”. Never too damaging – but they quietly contribute to the mind-games going on.
Some early focus has shifted to how well Lemtrada has been able to recover from that early burst which took him deep into his “red zone”. On day “chemotherapy plus 1”, the white blood count was nil/zero – so the risk of being blindsided by “Secondary Infection” was high.
A normal white cell count is between 4.0 – 11.0 – so that became the targeted safe-zone.
Monthly testing shows that the score has now risen to 2.9 – so this is still a weakness – but, touch wood, “Secondary Infection” doesn’t seem to have picked up on the fact.
So, touch wood again (and again), recovery can be described as “continuing”.”
They say the stats don’t lie.
But, in my case, neither does the bike.
2016 is 80 days old and I have cycled 2,700 miles.
It started a bit wobbly; and there were times that my body and legs felt utterly empty. But these last few weeks have been hugely encouraging.
I’m not racing. But I’m back. Happy. Riding some miles in the outdoors, desperately keen to stay healthy.
~11mths post-Lemtrada, and two minor relapses later, I continue to have monthly blood tests to monitor my RBC count and Lymphocytes (which were wiped out by the chemo).
My immune system is still significantly below the minimum range for a ‘healthy’ person (now at 0.9 vs a 1.5 “minimum”) – but my second Lemtrada course is in 7 weeks, so will bring my Lymphocyte count back to zero again anyway.