Full disclosure, I loved my high school English teacher. Still do. Not in the teacher crush type of love. But rather in the, I want to draw on this woman’s strengths, kind of way. She was authentic to her core. Bluntly honest in the most refreshing of ways. As intelligent as they come. She spoke with intent. Very little, but very on point. She was also gay and swore like a trooper. She was destined to be my mentor. I’m very thankful that even today, some thirty years later, she is my friend.
Interestingly, I was a full maths / science student. Lived and breathed it through senior school, and my undergraduate and postgraduate degrees. Whilst I went on to use these tools to establish and grow my businesses, writing and my love of the arts were always close in the background. Treasured for “my time”. I don’t read much, and certainly not fiction. Reading literally makes me comatose. Eye roll for all the Mills and Boon books I picked up at home and read as a teenager. Why on earth was my mother reading that? I don’t want to know. Regardless, no wonder I ended up “community”.
A quick English lesson.
Awareness is the quality or state of being aware: knowledge and understanding that something is happening or exists.
Aware is an adjective, that follows a verb. That makes sense, I can throw one of my unacceptable go-to swear words in front of that, and that would work nicely.
Awareness is a noun. Which seems incredibly disappointing and weak to me. I am very keen to make a case for why it can also be a verb. Or maybe admit my vocabulary is challenged and move with the International Myeloma Foundation (IMF) to ensure awareness meets action. Because with action, we can traverse from a noun to a verb, and just get shit done! Now that I’m good at.
Not to put a finer point on this, but time is ticking, and my fellow myeloma warriors and I need shit done.
March was “Multiple Myeloma Awareness Month” in Australia. Globally, they (thankfully) called March “Myeloma Action Month”. I actually wrote this back then but have been partially reluctant to lean into cancer so much that it becomes my identity, and partially haven't posted since I've been a little preoccupied. Mostly with going through the torture of trying to stay alive. But I digress. It's better late than never.
The IMF said that Myeloma Action Month was a global social awareness campaign to raise awareness of multiple myeloma — a cancer of the bone marrow plasma cells. It is held every year for the whole month of March to encourage individuals and groups to take actions that positively impact the myeloma community. This year, the IMF wanted to take action through its worldwide social awareness campaign that centres on the question, “What Does Myeloma Mean to Me?”
Before I answer that, forgive me for letting my (Instagram diagnosed) ADHD make me digress yet again. If an Instagram test says it’s so, it must be true. Or maybe it’s my primary school teacher partner who affirms this diagnosis? I wouldn’t argue with her. She bossy. 😉
I’m getting there… stick with me…
Myeloma Australia ran a campaign this year called “My Greatest Call”. It’s the campaign behind the Greatest Walk which saw over fifty of my friends and family come together to throw their support behind me and the myeloma community. My network raised over $8,500 in donations and over $1,000 in walk registrations. Our contribution did not go unnoticed, with Myeloma Australia reaching out to personally thank me for the efforts of each and every one of you.
Thank you. Thank you from every cell I’ve regrown this past month, and rest assured that these cell numbers are healthy! It means everything to me and to this underrepresented community.
I was also interviewed by Myeloma Australia earlier this year for a profile piece being shown at their inaugural fundraising lunch in Melbourne, “My Greatest Lunch” headed by Eddie McGuire. I was asked in this interview if I thought myeloma was my greatest call? And whilst it would be a big call to say that it is, because as a mother you always know that your greatest call is your contribution to parenting your children. Ensuring they are kind, decent, and successful human beings. There is no denying that I believe I have been given this challenge to do some good with it. To make a difference. It’s a tool I’ve been equipped with to enhance my resilience, mindset, and growth. To reach a greater audience, to help many more people, to provide lessons to my children that couldn’t reach such depths without living with a challenge like this, and to ultimately be proud of my contribution to this one precious life. As incredibly unfortunate as this thing is, beyond my gents it may just be my greatest call.
What does myeloma mean to me? Myeloma means I can touch the lives of others in a meaningful way. Living with myeloma is an opportunity to create awareness that leads to action. And action that ultimately leads to saving lives. What greater gift would you want in your one life? If that means losing some of my identity to cancer, that's a sacrifice I am willing to make. Albeit reluctantly.
I believe that awareness lights the way for those directly and indirectly effected by myeloma. I’ve seen it across my networks. People are intrinsically scared of the dark. It’s frightening. Often, they are frozen with fear or disappear in full flight. Either way, they are susceptible to failure. And failing to thrive when you’re living with a beast like myeloma, just isn’t an option. People are supported by information. Guided by it. Lifted by it. They can tackle things with expectations. Albeit in this world, expectations with very wide variances, safety factors, and margins of error. But you can live with the variances if you are educated that they exist. Simple, when informed.
Whilst awareness is critical for everyone to navigate direct or indirect exposure to myeloma. And by indirect, I mean our caregivers, our support crew (friends and loved ones), our support networks stemming from both our living and working relationships and communities. Awareness falls a little short of getting us off the giant barbed multiple myeloma hook. A hook which comes with physical ailments, mental anguish, perpetual tests and / or treatments, and the ultimate fear of failing to respond to any of the available regimes (western, natural, or otherwise) that haven’t already formed your many “lines of treatment”.
Here we are…
Awareness must meet action. The power is in the verb.
All the blogs, posts, stories, and social media comments in the world will not take this thing from me. And whilst I’m supported by Chinese medical practices and principles every week, I don’t think this will either. Or perhaps it’s more honest to say that as a science-based human with a genuine appreciation for all things woo-woo, I’m not about to trust that it would. Nor would I trust that my diet and juicing will stand alone cure my cancer. Or Japanese plumbs. Or drinking paw-paw broth. Or breath work. Or ice. Not the frozen water type, but the crystal methamphetamine type. Yes, that’s one of my favourite treatment suggestions too.
The reality is that whilst I will do most of these things in parallel to my Haematologist’s treatment plan, with the exception of ice, and breathwork, which somehow bores the living daylights out of me. Maybe ice would fix my breathwork? Given I don’t drink and can barely function on a fraction of a cannabis cookie, probably not wise. Most of us are relying on a scientific cure for myeloma. And we are assured that it’s oh so very close we can almost taste it. Just like the most magnificent optical illusion in the middle of a desert that teases you with water so heavenly you’d literally die to get at it. There’s every chance many suffering from myeloma will do just that. The majority of myeloma patients are aging, and not candidates for treatment that is otherwise available to younger, stronger, patients. Their options are more limited. Their response to treatment more challenging. The fight is that little bit harder. And please don’t think the challenge doesn’t sit with the younger patient group. I am party to under 50 support groups who lose people every week. Mothers of young children. Fathers too. Their fight cut far too short. It’s beyond heartbreaking. I have literally sat amongst other young blood cancer patients in treatment who are no longer here. Let me tell you, that lands heavy.
But where is that action at? There are treatment options that are far less taxing on myeloma patients. They are quicker, kinder to our bodies, and are statistically delivering a much better prognosis. Immunotherapies cush as CAR-T cell therapies that can equip people with their own lab engineered myeloma fighting cells. These aren’t a cure. Yet. But they are a giant leap in the right direction.
The catch? They aren't yet available to us in Australia.
The mind-blowing fact? These therapies have been on the radar in Australia since 2010. As it currently stands, these treatments continue to be trialled in a number of leading Australian myeloma medical institutions, including The Royal Brisbane Hospital less than ten minutes up the road from my home. Those lucky enough to qualify for a trial can at least progress this path knowing they’ve received the most promising treatment option currently available in the world.
For the rest of us, we live in hope. Hope that when awareness meets action, we too will have these treatment options. Many blood cancer specialists in Australia have seemingly long believed that CAR-T cell treatment would be made available to Australians sooner rather than later. Especially those with myeloma, as myeloma is incurable, and given commercial companies have moved aggressively to develop CAR-Ts specifically for myeloma. Whilst they didn’t expect approval to be difficult, moving it into earlier lines of treatment was always going to be. As it currently stands, both continue to be a battle.
Last year the Medical Services Advisory Committee (MSAC) received an application to support funding of the CAR-T cell therapy (Cilta cel) for the treatment of people with myeloma who have had four prior lines of therapy. Yes, four.
Let me provide some perspective on what a single line of treatment looks like for me. I was diagnosed with Kappa light chain multiple myeloma, characterised by light chain numbers exceeding 7,000 (normally less than 20) and myeloma bone marrow concentration of 35%. I had suffered multiple separate rib fractures and was anaemic. The results of my genetic testing, which provides valuable insight for prognosis and ideal treatment options, meant I received an aggressive treatment regime that would involve six cycles (months) of chemotherapy followed by a tandem stem cell transplant, most likely three months apart. This regime will round out my first line of treatment. One. Should I not remain in complete response (AKA remission) following this line of treatment, I will start a second line of treatment. CAR-T cell therapy, which is one of the most successful lines of defence in the fight against myeloma, won’t be available to me until after four lines of treatment. And even then, it won’t be available in Australia unless I get on a trial or the MSAC approve it.
Will the MSAC approve CAR-T cell therapy?
In February the MSAC deferred their decision, having requested further information from the manufacturer. I believe this is the second time CAR-T cell therapy has failed to receive approval in Australia. For fourteen years we’ve known about it, tested it, and tried to get approval for it. Meanwhile, many myeloma patients around the world benefit from it. Not all, but many.
Whilst MSAC acknowledges the safety and significant potential of this CAR T cell therapy to drastically improve outcomes for people living with myeloma, MSAC did not provide a positive recommendation for funding due to pricing concerns. Yes, money talks. Concerns also linked to the status of the demographic suffering with myeloma. That, I won’t elaborate on. It’s sad.
A link to the MSAC public summary is provided below. Good luck avoiding a state of comatose.
In the meantime, I’ll keep ticking off my lines of treatment. Ideally to reach and remain in complete response. Or at least be ready for that day when a treatment like CAR-T cell therapy becomes an option for me in Australia. I can show that I’ve done my time suffering through four body bashing lines of treatment, no doubt over many years, and therefore qualify for a much gentler therapy that has the potential to enable me to live with myeloma more easily and for much longer.
So, what of my treatment?
I went in for my first stem cell transplant in May. I was in hospital for two weeks as I recovered from the mother of all chemotherapy doses, administered to destroy the cells in my bone marrow to allow for the rebuilding of my cells from ground zero. My rebirth. Whilst recovery was far from enjoyable, I navigated my transplant very well. I’ll dedicate my next post to the specifics of myeloma treatment and what a stem cell transplant looks like. Since returning home I have mostly been bunkered down away from the world, trying to avoid all the nasties that are so prevalent. My bloodwork is excellent. My cell counts and biochemistry are perfect. So far, my light chain numbers would indicate that I am in complete response (AKA remission). I’m feeling very well. At my doctor’s orders I will now commence a 6–8-week fitness regime to rebuild by strength before I go in for my tandem (i.e. second) transplant. As I’ve said from day one… I’ve got this.
Much love,
S x
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