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AML & Climbing - a random info thread. 1-Nov-2022 At 1:30:00 PM IdratherbeclimbingM9

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Thanks jrc, sbm, gordoste, ODH, whitetrash, regdog55 & pmonks* - (* haven’t forgotten that I need to reply to you.)

ODH - those climbing trips you refer to must have been true epics… but I’m not in any competition with anything other than myself for exploring my limits.
Heh, heh, heh.

Hmm, you are triggering memories sbm. It’s nearly November - my preferred month for Aidfests; but sadly it won’t happen with my involvement this year.
Yes you are right, I’ve been known to eat a lemon for a meal, and consider them (and limes), as good wall food!

They last longer than Oranges, due sucking on rather than eating. They are more robust than bananas - (a John Fantini staple climbing meal), and pack smaller. They are easy to take a suck or bite of, then put back in ones pocket to get on with the task at hand. They quench the thirst and kerb the appetite in one go, … until a more nourishing meal can be had at the end of day bivy. Saves time on breakfast and lunch!

Original wall climbers in Yosemite used to take only a gallon tin of prunes and nuts plus 2 pints of water per day to cover the same issues, and the John Salathe / Anton Nelson duo set the precedent iirc, in 1947 on a 5 day ascent of the chimney (1200 ft), on Lost Arrow Spire, sitting out the bivouac nights without bedding or any extra gear on bare rock.

“Food, sleep, and water can be dispensed with to a degree not appreciated until one is in a position where little can be had,” Nelson wrote later.

—- —- —- —- —-
An ad break!
;-)
A bit of information from the recent ‘Light The Night’ Leukaemia Foundation fundraiser…
* 135,000 leukaemia sufferer’s in Australia at present.
* The number is growing by 19,000 pa, and this number is expected to double by 2035.
* Currently the number translates to 53 new cases diagnosed per day …
* They continue to raise funds for research to mitigate these numbers.
—- —- —- —- —-

So; here’s an update to this thread for you.

I’ve had lots of transfusions.
I feel for those trying to cope with leukaemia who choose not to have transfusions, as I certainly wouldn’t be coping without them.

I’m at 3/4 mark through my third round of chemo (each 21 days), and
I had a mixed bag day yesterday.

My treating Team consists of 20 plus members who specialise in leukaemia, confer and make decisions for the best outcome for their patients. This Team includes international Drs and Haematologists due to my being in a Research Trial.

I was told that I'm doing well and my AML is down to 0.0007 % (nuclear scale of measurement - sub-microscopic), and that my low blood counts are recovering at the expected rate.
I’m still febrile neutropenic but they consider this a good result so far, and are pleased with my progress.

They're aiming for nil leukaemia so that I don't relapse, and hence have a good long term prognosis.

I was then told that they've discovered that I have two further genetic mutations of my blood - (results are slow to come in from the marrow biopsies when looked at genetically), and this combined with the one they were addressing (3 all up), is now compromising the treatment plan.

As such I definitely need (will have), a bone marrow transplant (BMT) ...
~> an instant 100 day stay in hospital added to my sentence as an inmate, as time on for good behaviour!
This took the wind out of my sails somewhat as I was hoping to avoid this path and it took a bit to cope with emotionally as I was hanging out for chemo to end and suddenly had my goalposts shifted.
:-(

(Triple mutation)
NPM1
DNMT3A
FLT3 - 1TD

In patients with a triple mutation the worry is whether chemo will give a long term survival rate and inherent risk of disease return.

Gilteritinib chemo tablets that address the FLT3 mutation (the Trial I’m on), stops during Bone Marrow Transplant and resumes 30-45 days after transplant. This is the beginning of the Maintenance Cycle for me.

Bone marrow transplants (BMT) are not without risk; indeed one can be worse off for having it done; and they still have a degree of uncertainty of successful outcome ...
I’d never heard of such things as Graft vs Host Disease (GVH), and Graft vs Leukaemia (GVL) Effect, before now… both associated with BMT’s.

I can't see anything beyond mid March 2023 as the next horizon now, as that's our new timeframe for our Melbourne sojourn for starting to see clear of the woods.

I started this journey 15/07/22.