ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I'm 42 years old, (was 39 when life went somewhat awry) with no history of illness, Ironman finisher who has been diagnosed with myeloma. Did not see this coming. This blog summarises my journey from unexpected diagnosis through the treatment path. My aim is to use myeloma as a catalyst for living a better, more fulfilling life and documenting the changes I am making in all aspects of my family and work commitments.

De Ja Vu

or


I’m quite sure we have all, at one time or another, uttered the immortal line favoured by the mid-thirty-something (and beyond) “if only I knew then what I know now.”

Experience is such a great asset to the generation ahead of those following in their wake. (you know what I mean; the “young people” we all lecture and gripe about, but at the same time not-so-secretly envy)

However, there is truth to the saying and it is working in my favour at the moment.

As expected, my paraproteins continue to rise; thankfully at a sedentary pace, for the moment.

Last time I was here, I had no idea I was not 100% and was able to pass off the aches, pains and seemingly innocuous ailments as down to the training exertions of 2016.

In hindsight, I’m now able to recognise them for what they are and have been able to act much more swiftly to nip them, as much as can be hoped for, in the bud.

5.6 (was 5.4)

But, like turning the proverbial oil tanker, it feels like I am slowly but firmly, being redirected back into the sadly familiar waters which I had, after escaping camp-Christie some 2 years ago, been happy to put behind me.

Only this time, I kind of know what is coming.

Of course, I am quite aware that curve balls can be hurled in my direction at any point. No path laced with illness is ever truly predictable.

And I’ve been more than lucky enough to have 2 decent years of getting fitter, healthier, growing hair and being productive.

Remember, the doctors never expected the autologous stem cell transplant to hold much beyond 6 months given my previous form on medical interventions.

But now, I just can’t ignore the back aches and associated disruptions; all being possible indicators of more sinister rumblings.

I’m not concerned and certainly don’t spend time worrying about this upward trend.

But, I am less than enthused about the likely testing protocols, proddings and pokings that may well be on the horizon.

One benefit of being a newbie to the world of cancer treatment was a naivety to the whole affair whereas now, hindsight is a gift I could do without.

Back in 2016/17 when the doctors were running their tests to identify the culprit behind my post Iroman ailments; the PET-scan was one I was determined to avoid repeating.

Nurse in a protective lead-lined outfit. Syringe secured in a heavy-duty metal box and encased in a ring of lead to contain the radioactive glucose solution within.

Which was then injected into me to go on its merry radioactive way and attach itself to some cancerous cells!

To top it off, I had to self isolate afterwards so as not to subject the kids to my ready brek-esque glow of contamination.

I should be pretty good at that part now.

This week, I was booked in for another to see if the myeloma is mobilising at a rate that might compromise my bone structure again.

Not ideal given the strict isolation we have been following since global lockdown, but these are the risks that have to be balanced against a greater good in terms of personal well being.

The difference this time round, is that I am much more in control of my exposure to activities that might damage my back again.

And, because I can recognise the signs, I’ve been able to act much more swiftly to get the doctors on board with helping to hold back the tide which so brutally swept in 3 years ago.

I feel much more in control (whether I really am or not is open to conjecture, but feeling it is enough for me)

Back then, the PET scan was just the start of what turned out to be a rocky but ultimately, in relative terms, successful escapade. The Paraprotein was running away at a pace and my skeleton looked like Swiss cheese.

Fast forward 36 months.

Tangible, positive progressions; both on a personal level and in the world of science and medicine.

This has been and continues to be as much a battle to buy time in anticipation of new treatments in the fight against myeloma, as it is in maximising the existing arsenal and getting that paraprotein number under control; whilst finding ways to allow my body to keep going.

When my back fractured, I remember a nurse telling me that this was a common side effect of myeloma; but, that of all the blood cancers I could have got, this was one of the better ones.

At the time I would very much have liked to knock him onto his arse. (Unfortunately, 3 broken vertebrae meant I was at that precise moment, literally on my own arse in a wheel chair; the irony )

But, with the benefit of our good old friend hindsight, he was absolutely right.

I genuinely am grateful, despite myeloma’s persistent stubbornness in the face of curability, that what I got was manageable.

That I have been able to find a way to do something positive in 10’000 Donors, that is delivering beyond my own insular needs and smashing even my greatest aspirations for the project.

So much is happening with alternative chemotherapies, CAR-T and even drugs to manage graft vs host ,which might allow a less than perfectly matched stem cell donor to donate if I do not find a 10/10 match in time.

Every option offers potential to stave off the inevitable and buy more time.

All I need do is stick with the program and keep on searching for that elusive stem cell match.

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2 Comments

  1. Dave 5th June 2020

    Hi Pete,
    Yet again you put your dilemma in it’s place with your blend “wordsmithing” keep it up mate.,
    Dave R.

  2. Sean william Winter 24th June 2020

    hi pete ever thought about nueropathic approaches to myeloma. some people or a lot are taking curcmumin 4- 8 grams per day and some have had there m spike numbers drop slightly. plant based diet. there a facebook group. https://www.facebook.com/groups/146446022682511/about/ although it isnt a cure, some people have had there numbers drop. curcumin there has bin studies on it and has bin shown to help some people, but ultimate the stem cells is the cure this is just things on side you could try.

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