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
NEXT!
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.
Yes thank fuck for smart people alright. You have got this and when you haven’t I’m here for you. xxx
Thanks love. I had a call late yesterday afternoon from a nurse at the infusion unit. She was so friendly and helpful, made my stress levels drop significantly! 🙂
oh wow, I am lost for words. I feel like I know you from the twitter / blogging worlds. Best of luck for your treatment.
Thank FUCK for smart people (sorry Amanda’s Mum for typing and shouting the word but I dread to think where we would all be without them.) I’ll be thinking of you next week and have no doubt the treatment will be a success x
Thanks Kirsten. I fear I’ve opened Pandora’s box on the swearing. It’s strangely liberating – fuckity fuck fuck fuck.
There.
Much better!
There’s so many people cheering you on. Go and kick MS’s butt. You’ve got this. Thank you for being so inspiring.
SO many people cheering me on. I’m lucky to have such a great support team. Thanks Kylie. xx
Amanda I am sending you much love and light xxxxxxx as always I adore your amazing spirit and positive attitude. I know there is not a lot I can do but you will always be in my thoughts and my version of prayers xxxxxxx and also Kevin and the flying dogs xxxxxx
Thanks Sharon. Give Maggie a pat for me! xx
Yes, thank goodness for smart people. Will be thinking of you and praying for this treatment, that it will work. Sending you all my love and prayers. xx
Thanks Bec. I had a call from one of the nurses in the unit yesterday. She was so friendly, it really calmed my worried brain! xx
Far out Amanda, I will be sending you every thought and hug and yes, the smart people will get this. You’ll get this (coz you’re smart too). I’ve been in my own little fog and missed your first post. Thinking amazing huge big loving thoughts for you xxxxxx
dear amanda’s mum: please look away now….
thank fuck for the smart people… who don’t give up
thank fuck for australia’s medical system… (where i come from, a person could go broke just getting diagnosed and advised on treatment)
thank fuck that there’s still money for groceries… see above
thank fuck for your support crews… what an an amazing group of people you have around you
and in turn, we give thanks for you, amanda.
sending lots of love. (and call on me if you need anyone to run some backup; i’m here in bris)
Thanks Buf.
You make a good point about our health system. I’ve joined a fb group for people having this treatment and so much of the conversation is about whether or not their medical insurer will pay for the treatment or worry about changing jobs mid way through treatment (and whether the new insurer will pay for round 2). I’m so lucky not to have that worry.
PS. I love that you’ve offered to help. You’re a darling. xx
hey now, just because we haven’t actually met (yet) doesn’t mean that we aren’t old friends (in my head)! ha.
the COLLECTIVE OTHER MOTHERS are pulling for you, babe.
xoxo
Thank fuck for smart people alright! And for the 120K blessing. I’ll have you here in my heart next week, keeping you close to send you love and strength. I’m here if I can help at all, in any way xxx
I’m a bit lost for words too as I hadn’t read about your diagnosis. Sending you lots of virtual hugs and positive vibes xxxx
Good luck with the treatment – fingers and toes and everything else crossed that it will work and not leave you with too many nasty side effects x
I just saw your post on Facebook about starting your treatment so just jumped in to see how you were. How brilliant is a Dr that gives his personal opinion too, not just his professional! Sending all the good vibes. xx
Thank fuck for them indeed. A friend with lupus has had a similar type (in the grand scheme, I’m not an expert, obviously) of chemo type treatment.
You gotta love researchers that don’t give up.
Stay strong & kick some ass!
Thank Fuck indeed! Where would we be without the amazingly smart people who refuse to give up when they believe they are onto something wonderful!
I know you have finished your week now and I hope that things haven’t been too horrendous for you.
I think I saw a lady on the Today show this morning who had this treatment. She is doing so well now she is going to walk the city to surf and when she had the treatment two years ago was just about in a wheelchair!
Thinking of you (and sorry Amanda’s mum for swearing, my mum still tells me off at 45 too!)