Don’t worry Mum, that title says fac. It’s colloquial French for university.
Yes, I know what it looks like. Yes, I meant it.
No, I don’t think anyone will think less of me for it. Cool?
The Little Sister was making churros and ice cream sundaes on the iPad behind us while the Neurologist listed our options.
Yes it was Multiple Sclerosis.
Yes it was time for treatment.
Injections, they’re safe but old science.
What else you got?
Tablets, less invasive but incidences of fatal brain infections
An infusion of chemotherapy for five days this year and three days next year. Then potentially no more treatment after that.
Tell me more…..
And so we sat listening to my Neurologist outline the case for Lemtrada; pausing occasionally to ‘eat’ the ice creams that the Little Sister delivered. When he finished he said ‘if I had MS I’d do this’. With those words he kindly removed any doubt I had that giving MS both barrels was my best option.
Alemtuzumab is a monoclonal antibody that binds to the surface of mature lymphocytes and marks then for destruction. After the mature misbehaving lymphocytes are destroyed, your body makes new ones from bone marrow. The hope is that the new lymphocytes don’t transgress like the old ones. That is, they’re not exposed to the same unknown triggers that caused the originals to attack the myelin sheaths of my nerves.
The drug was initially used in the treatment of types of leukaemia but some clever chaps at Cambridge University saw the application for use in the treatment of MS patients.
Their first trial wasn’t a success. I think the accepted position is that the trial was on patients who’s MS had progressed too far. The drug can’t repair the damage, just prevent further damage being done.
But the chaps at Cambridge weren’t discouraged. They knew the drug had potential and eventually it was approved for use in the treatment of Relapsing Remitting Multiple Sclerosis.
The treatment isn’t without risk and it’s not suitable for everyone. There’s a suite of drugs to take post-treatment and a strict monitoring regime that I’ve committed to following.
I’m incredibly grateful to be offered this treatment; the timing is perfect….Lemtrada hasn’t been around long…I’m lucky to meet the criteria…but there’s also a $120k silver lining to the timing.
Lemtrada has only been on the PBS in Australia since April 2015. Prior to that the cost for treatment was $120,000. (Why it costs $120k as an MS drug when it only cost $20k as a leukaemia drug is perhaps a blog post for another time.)
I am incredibly grateful, however, that Bearhands and I do not have try to raise that kind of money. There are no guarantees that this approach will be effective. Deciding whether to gamble our financial future on a treatment that may or may not work for me would have been an agonising decision. I’m counting my lucky stars that I only have to focus on getting well.
I head to Brisbane on Monday to start treatment. My support crew hss mobilised. I’ll stay with Mum and Dad in Brisbane for the week while my wonderful in-laws Howard and Lynn help Bearhands with the kids on the farm.
I’m apprehensive but confident that this is our best shot of continuing to live the life that we’ve planned. I’d like nothing more than to shake the hands of the two Cambridge researchers who knew their idea had merit and weren’t discouraged after their initial set backs.
As Bearhands said that night after we’d made our treatment plan, “thank fuck for smart people”.
Yes Mum, I actually typed it that time. I’ll accept my lashings in the car ride to Brisbane on Sunday.