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AML & Climbing - a random info thread. 27-May-2023 At 2:11:00 PM IdratherbeclimbingM9

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G’day pmonks, pi, et al,
Thanks for the enquiries / thoughts.

For the record, I’ve wondered how you (& others), are getting on too from time to time, but I’ve been a bit distracted - so I’m sorry that I haven’t expressed it.
:-)

Where to start … as the journey is all consuming if not overpowering at times, and making sense of it all I feel is a somewhat futile exercise, but here’s a kaleidoscope of thoughts on it for any who care to read on and share the journey with me.

I’m currently at Day 150 post transplant and all things considered am doing very well.

This is tempered by my awareness of those in my situation that are not doing well.
It seems to me that the whole blood cancer game is a lottery with no rhyme or reason as to how things will turn out despite the best of medical intervention.
The experts treating me don’t give guarantees, and I gather that the course they follow is variable depending on patient response to treatment at any given point in time.

Physically I take things as they come. It can be crap at times but this is not unexpected, and so is dealt with as it arises along the way. I find the mental challenge of dealing with the long term unknown aspects of leukaemia, eg chances of relapse, or serious graft vs host disease complications to be a greater issue. It’s an insidious debilitating disease.

So, back on topic of howzitgoin…
The easy stuff to recount is the physical -
Since I last posted I’ve had my Hickman Line removed, and now blood sampling requires pincushioning me - a regular occurrence.
:-)

My eighth bone marrow biopsy went awry.
Internal bleeding.
I’m told that it’s a rare occurrence.
The resultant pain and immobility landed me in hospital overnight (after an MRI scan), but as it turned out it cleared of itself quite quickly.

Recently the senior Haematologist ended the main immunosuppressant (cyclosporine), that I was on much earlier than I expected. I’d based the longevity of this on what I’d learnt from others plus background reading, and his doing so is an attempt to deal with the residual remaining blood mutation (NPM1), that I have; ie let my new marrow attack it instead of being held back from doing so.
Consequently I’m currently at my most vulnerable stage to GVHD, but on the flip side they wouldn’t have done this if I wasn’t progressing as well as I am.
:-)

The trial I’m in has ongoing regular and very comprehensive monitoring of me, along with team reviews. This continues to be a source of comfort as it provides an early heads up if I start running off the rails and allows for timely intervention.

Expectations change as events unfold along the way…
As my review appointments started spanning out we started mentally preparing for returning home in the longer term to participate in a greater normality instead of being a professional patient.
After 10 months in Melbourne we had the Anzac weekend back at home in rural Victoria. This also involved appointments with the local GP to bring them up to speed with my condition as part of my transitioning, and their ongoing collaboration with the Haem-Team at Melbourne Peter MacCallum Cancer Hospital.