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Chockstone Forum - Accidents & Injuries

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Topic Date User
AML & Climbing - a random info thread. 15-Nov-2022 At 3:18:43 PM IdratherbeclimbingM9
Message
Thanks E Wells, M75, gordoste, & rodw, - though I think some of us should get out of the knocked-up mind gutter, and up onto the filthy footpath; where the rest of us dregs reside!

> I started this journey 15/07/22.
> Iíve been told that left untreated Iíd be dead inside 4 months.

Upon the anniversary of my death, an update to this thread seems fitting.
Donít be sad or remorseful, it will only confuse me!

As Iím getting older, Iím getting somewhat better at this game of life thing ~> and I have found thereís more than one way to get knocked up M75!

Iím told by the haematology mob that my scheduled upcoming BMT is my rebirth-day; as itís the equivalent of new life due to effectively having a double organ transplant Ö

Hmm, let me do some maths...
Lazarus rose from the dead the day he died.
Christ rose three days after his demise.

I was diagnosed 15/07
+ 4 months = 15/11
BMT 20/12/22 (= day 0)
________________________
35 days between dead and rising.
~> I win!
;-)

Iíve read some scary things about BMTs lately, such as a 26 yr old girl requiring a double lung transplant as a result of Graft vs Host Disease (where the new immune system attacks the hosts body due recognising it as foreign), after a BMT.

A BMT sounds like a dicey process indeed when I read statistics like 1/3 are successful, 1/3 are partially successful (to varying degrees), and 1/3 are unsuccessful, which doesnít make for unbridled confidence in the future as it seems to me that I have a 2/3 chance of my future not being too good; but to do nothing, ie opt out of having the BMT done, is to give myself no chance at all.

GVHD is not all bad, as a small amount of it is required to indicate that the BMT has been successful, but itís a medical balancing act to keep it under control and let the new immune system fully regenerate.

The mutations that the BMT address, corroborate each other and the Trial Team know that I'll relapse from a remission because of it.
A BMT is their only way to break the mutations.

I asked the head Haematologist Professor in charge of the Trial the question of given that they now know of three mutations that I have, what the chances of more being found were, and got the answer that it's possible and not only that, the ones they know about can morph into other variations...
I got the strong impression from him that Leukaemia is a sneaky disease and they are constantly playing catch-up in dealing with it.

So, an uncertain future it is at this stage.
'Tis hard to be truly glass half full about it when itís not my normal nature and I've spent my life being a realist who also acknowledges that Murphy's Law might be a thing!
;-)

I'm aiming further ahead than simple selfish pursuits again as a goal in the next year or so.
I still have climbs to do, mtbíing and motorcycle trips, etc, to undertake; but more importantly getting away in our van with my wife who is my No1 carer and supporter, and who will also require a recharge for starters, is my highest priority.

Itís easy to be maudlin, but one thingís for sure, Acute Leukaemia is a life changing experience, and will test my adaptability, and Iím only just starting to come to terms with what that might entail.

The full set of baseline investigative health tests Iím undergoing ahead of the BMT have indirectly given me positive feedback as to how Iím progressing so far.
Relative within the bigger picture of AML I gather that Iím in a better position to deal with it (and this the case even without the reinforcement of my Consolidation period with starting Cycle Four of chemo tomorrow), than many others who have gone before me.
~> just hoping that the light at the end of the long corridor is not the dunny door thatís been left ajar.
;-)

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