ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I’m 39 years old, 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.

Unlucky for some

Friday 13TH

 

Simply put, we are back to square 1.

The Aussie “match”, like the American, turned out to be a lemon.

Seems lightning is more than capable of striking twice and is able to do so with scant regard for those on the wrong end of its fury.

Fairness does not come into the equation sadly.

So how is this possible?

Well, the official version of events is as follows; and sounds like something more aligned to buying a computer back in the 80’s.

When you get swabbed, the test is done at a low resolution. What this means is that the brains back at the lab only identify a proportion of the overall genetic code that has to be a match for chumps like me in need of a new immune system.

It is cheaper to do it this way.

These therefore give an indication of potential match rather than a cast iron guarantee.

Based on the potential match, donors are then called in to have a blood test, where a high resolution test is run i.e. looking at all the associated genetic factors.

Makes total sense but does little to soften the blow.

At least we now know more detail behind the process; to the point where I’m sure I am worthy of a doctorate in this field!

Also found out that the post stem cell paraprotein number is 9.

Would have been nice to get it lower, apparently absolute zero is just not possible; but the doctors seemed happy enough as long as it stays low.

More waiting.

I now go on a constant program of the chemotherapy I was taking (Lenalidomide) prior to the stem cell transplant. The theory being that it will keep the paraproteins in check.

Fingers crossed.

So the search continues. Focus purely on recruiting to the stem cell register.

I have written my presentation that I intend on taking as far and wide as I can.

Its pretty much all I can do now to influence this bloody mess!

 

 

 

 

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1 Comment

  1. Zihni Acar Yazıcı 16th July 2018

    The search for a donor must continue. How can it be done more efficiently is an open question. The attention of the media and the masses it serves must be engaged somehow for new registrations in all countries meeting required criteria.

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