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|AML & Climbing - a random info thread.
Thanks for the update - I didn't realise quite how involved the diagnosis/journey has been. Quite a wild ride so far. I hope the treatment continues to do its job without wiping you out too much, and that you continue to have recuperation outside the hospital as much as possible.
Thanks jrc, sbm, gordoste, ODH, whitetrash, regdog55 & pmonks* - (* havenít forgotten that I need to reply to you.)
ODH - those climbing trips you refer to must have been true epicsÖ but Iím not in any competition with anything other than myself for exploring my limits.
Heh, heh, heh.
Hmm, you are triggering memories sbm. Itís nearly November - my preferred month for Aidfests; but sadly it wonít happen with my involvement this year.
Yes you are right, Iíve 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, Ö 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.
ďFood, sleep, and water can be dispensed with to a degree not appreciated until one is in a position where little can be had,Ē Nelson wrote later.
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An ad break!
A bit of information from the recent ĎLight The Nightí Leukaemia Foundation fundraiserÖ
* 135,000 leukaemia suffererís 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 Ö
* They continue to raise funds for research to mitigate these numbers.
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So; hereís an update to this thread for you.
Iíve had lots of transfusions.
I feel for those trying to cope with leukaemia who choose not to have transfusions, as I certainly wouldnít be coping without them.
Iím 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.
Iím 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.
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 Iím 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 ...
Iíd never heard of such things as Graft vs Host Disease (GVH), and Graft vs Leukaemia (GVL) Effect, before nowÖ both associated with BMTís.
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.
A ramble change of topic -
The three day Ozy (again), climb I had pencilled in for this month (November), with Chocky inmates TimP and PeterW, is now off my agenda indefinitely at this stageÖ, though I had been thinking about such things on and off as distraction from present events.
Strangely enough I woke early (4 am), a few days ago and was lying there with eyes closed trying to get back to sleep but reliving moments on a (generic) wall in incredible perceptive-awareness detail.
A hyper-awareness detail of the feelings involved that I havenít experienced before post an actual experience; and a different dimension to both the sharpness of focus experienced at the actual time, and also my CABG awareness experience that I had in 2017 in that sense.
Eg I could actually feel the weight of the ropes and my rack, and the stretching of rope under body weight load along with the breeze on my face, and the thrill of the exposureÖ
In hindsight it was an amazing experience. A mate summed it up (plagiarism warning!), as like being still in a precarious process, still having tenuous hook moves to link up and are further from the top-out than thought.
I hope, like climbing, there are beautiful safe resting moments in the ascent of this present leukaemia adventure.
I wear a Fitbit, and later checked my heart rate record on it and found it spiked at that time, so I also had a physiological response accompanying my psychological state at the timeÖ
The mind is an incredible thingÖ
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Change direction on my ramblings.
A Mtn bike riding mate wants to start up a marrow collection for me in my hometown!
~> I now have visions of him out on the singletrack, emptying old roo and wombat bones into jam jars!
Others want to know how fresh the roadkill needs to be, and where to send the bones!
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Okay, putting serious hat back on again -
Last chemo cycle I was peeing blood in my urine for a while and consequently underwent an ultrasound, then MRI and later a Flexible Cystoscopy to diagnose what was happening...
Results were inconclusive, but the Flexible Cystoscopy indicated nil problems, and the peeing blood issue has since stopped.
Drs reckon it could have been a consequence of the many drugs that they have me on, or simply another side effect of chemo.
How Iíve felt on chemo has been a roller coaster depending on dosage and time within the cycle, but in hindsight the low ebbs arenít that long.
During the short recovery breaks Iíve been eating heaps of food to regain lost weight, and trying to increase the protein content of it. This combined with light weights exercise to maintain a semblance of upper body strength / minimise muscle atrophy, along with walking to build up stamina.
The walks give me direct feedback as itís very evident each time I start a new recuperation break that even short distances knock me up.
I soon progress from 1, to 2, to 5 kms at a time; then try for quicker times over the same ground plus seeking out the more hilly bits.
Sustained exercise rapidly tells me my limitations and itís annoying finding myself puffing like a billygoat walking at a moderate pace on relatively gentle slopes.
Even if my mates were to think it possible for me to participate, the south side Buffalo access track to the north wall is out of contention for me at the moment (a far cry from my previous ability on a recce trip of down and back up to carpark in under an hour), let alone jumaring a wall rope, assuming they wanted a passenger instead of an active participant on a climb there!
Itíll be a protracted recovery from this afflictionÖ
I know Iím doing okay overall, as casting my eyes around the Ward at other inmates and how they are coping reinforces this to me. Still, Iím not used to being so debilitated.
Another underline for this sentiment is hearing / seeing the daily helicopter arrivals at Royal Melbourne Hospital carrying patients requiring emergency care.
Itís a small world that I now inhabit, though I have aspirations of expanding it Ďsoon así!
Time traveller! I like the idea of impressions stored within a toroidal aura of bio electric feild beyond the body like concentric rings of a tree, there to be accessed and consolidated during sleep into whatever we are. The kind of experience you describe is fascinating, thanks for sharing. Those lucid moments in the wee hrs of the morning offer so much food for thought!
On 2-Nov-2022 E. Wells wrote:
>Time traveller! I like the idea of impressions stored within a toroidal
>aura of bio electric feild beyond the body like concentric rings of a tree,
>there to be accessed and consolidated during sleep into whatever we are.
>The kind of experience you describe is fascinating, thanks for sharing.
>Those lucid moments in the wee hrs of the morning offer so much food for
Really sorry to hear about the latest obstacle that has come into sight Rod ... I am hesitant to compare it to anything in climbing because climbing is something you decide to do. I think that the fact that even with all of the stuff you're going through, you are still thinking about the other patients and the helicopter arrivals says a whole lot. Fingers and toes are crossed for your BMT.
I could swear I've read an account of similar experiences with replaying memories when the mind has nothing else to do. Perhaps it was in a Solzhenitsyn book.
On 1-Nov-2022 IdratherbeclimbingM9 wrote:
>ÖSNIPÖ The walks give me direct feedback as itís very evident each time I start
>a new recuperation break that even short distances knock me up. ÖSNIPÖ
Ummmmm Rod, Iím pretty sure thatís not the way to get knocked upÖ heh heh heh
Thanks for sharing your journey Rod, all the best for the up coming trails a head.
On 9-Nov-2022 Miguel75 wrote:
>On 1-Nov-2022 IdratherbeclimbingM9 wrote:
>>ÖSNIPÖ The walks give me direct feedback as itís very evident each time
>>a new recuperation break that even short distances knock me up. ÖSNIPÖ
>Ummmmm Rod, Iím pretty sure thatís not the way to get knocked upÖ heh
No problem now that you've given him the SNIP
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.
Thanks for the updates M9, I'd say 'chin up' but from your tone you already have that one in spades.
Hey just out of interest what are you doing to pass the time?
Thanks as always for the update M9. A lot to digest and as always a tough read. Wishing you all the best for the upcoming BMT!
Scary journey bro M9.
Thanks for enlightening us.
Hereís hoping that your camaraderie of the rope and campfire provides strength to top out this one.
I hope the BMT is going well, and not causing too much grief. Sending healing thoughts, and encouraging your blood to cheer up.
An update fyi.
I got discharged from Royal Melbourne Hospital yesterday; on day 19 of what I was originally told would be initially 45 days in hospital of a 100 day process.
Haematology Drs assessed me as being 9.5 out of 10 and underlined that Iíve been through ďan incredibly complex experienceĒ, and am ďnow in transition, but that the recovery process is just as important.Ē
They also warned me that half who get discharged get readmitted but that's normal if I develop a fever (cumulative side effect of all the chemo), and would only be for a short duration.
Iím still under the Bone Marrow Transplant Team for a while yet. The Trial Team will blend in again later.
Appointments at Peter MacCallum Cancer Research Hospital regularly for a while (remainder of the 100 day process), and that's my new horizon...
I trust all is well with the Chocky crew.
Iíll follow up this post with another soon in more detail for any interested, but thought Iíd share the good news in a nutshell.
Thanks gfdonc, gordoste, dalai, Duang Daunk regdog55 & TimP.
Warning: Epistle upcoming!
Nils bastardi carborundum!
(Iím not letting the bastard grind me down!).
>Hey just out of interest what are you doing to pass the time?
Aah, an opportunity for a Ďlifeí outside of my new Ďnormalí, by an acknowledgment and consideration of facts!
Please indulge me giving a book reply to you when youíre only wanting a pageÖ
Long and short of it is that between hospital routine and incredible fatigue/lethargy as a result of the equivalent of a double organ transplant; not much other than snaffling sleep when I can get it, but still waking up tired.
The hospital routine on Haematology Ward is full-on, with little time between constant interruptions by the schedule to do much at all with any real continuity.
When on chemo, haemoglobin or platelet transfusions; Monitoring Observations of blood pressure, oxygen level, temperature, etc, are frequent to the point of 1/4 hourly sometimes though standard routine is at least 6 hourly anyway.
Being hooked up to a Pump machine (BD Alaris Unit), with not uncommonly four, though usually only two drip packets connected (can be up to ten),dispensing chemo / antibiotics / saline solution flushing / blood transfusions, etc is a time consuming rolling interruption.
This is because the lines from it that are connected into a Hickman Line installed in my chest (or PICC line in upper arm), both of which are a kind of semi-permanent cannula; often get occlusions, or sometimes air bubbles, which sets off alarms that require sorting of the issue.
Alarms also go off as drips time-out for changing to new drip bags.
The alarms are loud and effectively wake me up if I happen to be sleeping.
This doesnít sound like a big deal, but being hooked up continuously 24/7 means between the machine alarms and Observations, coupled with Drs and other Specialistís visits, procedure appointments, meals; not to mention increased comfort stop requirements due the amount of Ďstuffí going into my body and needing to come out; Ö any breaks (2 hours is a luxury), I get are usually spent napping due lack of sleep otherwise!
Ö And this is if Iím not feeling ratshit as a result of the drugs / chemo.
To top it off because my blood counts are so low, fatigue is incredible and this perhaps is the most debilitating aspect of leukaemia, as all the other stuff comes in waves or you actually become accustomed to it, but the fatigue is constant.
It makes itself evident despite my best efforts to thwart it. A typical example being reading (my preferred escape), or texting on the phone to keep in contact with others.
After getting part way through a paragraph, then nodding off to sleep, waking up with a crooked neck to resume, only to nod off again, repeat ad infinitum Ö you get the idea!
~> care to hazard a guess as to how long itís taken me to type this reply?
Not minutes, not hours, but days!!
My escapism mentioned above has been reduced from reading lengthy books that I never seem to get to the end of, to living vicariously through short interval stuff like following others exploits on Strava, or Website Forums, where thereís no need to keep up to date in any meaningful way with whatís happening, ie a passing interest is elegant-sufficiency.
Hereís a strange overlap of thought process that I find intriguing Ö
I read the following excerpt from a third party review about a difficult wall climb done by a climbing duo-
> (reviewer) found their (ascentionists) comments on the time taken for the experience quite insightful also. It had me thinking about what I would do with two extra weeks of my life, if given the 'month' it seemed like to them, in the 'doing' process. If this sounds convoluted then you are probably right; but big walls will do that to you; i.e. cause a certain amount of introspection / reflection.
Not that Iím on a wall, Ö up against one at the moment perhaps, Ö but-
I can easily empathise with both sides of the sentiment expressed in that review statement.
Iím re-confirming to myself that time and normality get warped by intense experiences.
(E. Wells - time traveler - you will be stoked, read on Ö !).
In my climbing (and other recreational pursuits), Iíve analysed where my stoke comes from, and worked out that itís the zone at the point of total commitment coupled with greatest uncertainty of outcome.
Magnification of both those aspects lengthens the timeframe of being in that zone.
This Leukaemia Adventure is certainly providing ample opportunity to explore my mindset.
Leukaemia is a sneaky disease and can morph into other forms of blood mutations, so itís more a case of learning to live with it than battling it.
So far, so good, but itís a long unpaved path ahead. A scheduled bone marrow transplant soon will give me a 25% chance of living successfully with it. I have no viable alternative, so yes please, Iíll have another throw of the dice Ö
I'm readmitted to hospital after having another short break, for another Hickman Line insertion and commencement this arvo of chemo treatment again, as a final blast to reduce my immune system to nil (over the next week), as preparation for bone marrow transplant on 28 Dec.
So, Iím back in recovery with another piece of body art (new Hickman Line), for next show and tell time.
As part of the process I had an interview with the Principal Investigator Haematologist and he underscored my situation in his subsequent report which I quote a portion of, for your interest Ö
ďWe discussed the likely toxicities of infections, mucositis, organ dysfunction, graft versus host disease and small risk of graft dysfunction failure. The long term outcomes with a reduced intensity allogeneic transplant are in the order of 50% with 25% risk of relapse and approximately 20% risk of transplant related mortality in the first 2 years of transplant.Ē
Ö So, from what I understand, my chances have improved from 30% to 50% recovery, and correspondingly the chance of death as an outcome have reduced from 30% to 20%; with the remaining 30% being a less than optimal outcomeÖ
And, it'll take 2 years to get out of the woods...
~> It's very obvious to me that I've now become a gambler, to add to my many other vices(!), as it is a definite throwing of the dice in terms of whatever outcome is gained.
~> so, yes please, Iíll have another throw of the dice!
The transplant process is relatively straightforward, however if the result goes awry, there's no reversal of the situation.
~> So, for us it's an easy choice commitment that's based on having no viable alternative.
Although the odds aren't wonderful, I wouldn't mind having the same odds for winning the lottery!
... and on the assumption all goes well in the next two years, I won't be buying any lottery tickets, because I figure I will have used up all of my allocation of 'good odds' this time around.
Life is a journey to be experienced, not a problem to be solved ~ Winnie The Pooh - simple but wise words Ö
The voluntary marrow donation that I later received was triggered by my requirement and the donation is fresh. Con_text: 20 yrs ago there were half a million matches from 1.5 million donors. Today there is 30 million donors but still only half a million matches. This because genetic sequence matching = very well matched, but in the old days many of the matches were not good!
My donor was a German woman living in Germany.
Thank you, thank you unknown voluntary donor.
The donation consisted of:
4.6 million stem cells / kilo
Chilled to minus 195.8 C
Collected Germany 29/11/22
Genetically tested again in Australia for quality assured matching.
Given Australia 28/12/22
(Blood group O+ so it turns out that my blood group didnít change after all!).
Not all of the marrow was given to me, as they hold some in reserve in case I need it further down the line. I think it is retained till 2043 or something like thatÖ
Some more random bits and pieces Ö
Iíve had an incredibly good outcome and the whole process thus far regarding the marrow transplant was very straightforward in my case.
Day 12 was rough with my temperature spiking to 39 C, but by Day 14 I dared to allow myself the luxury of believing Iím through the trough - like reaching a point in a hard runout lead climb where you know that youíre going to topout but itís not in the bag yet.
I actually got excited about it at 2.30 am and couldnít get back to sleep!
Iím on immunosuppressive drugs, particularly cyclosporine (amongst others), that keep my recovery rate within tight thresholds. Kind of like growing a lawn evenly with the immunosuppressive elements trimming the random get ahead of the evenness elements.
Jury duty debacle.
My wife received a Jury Duty notice.
She replied requesting a deferral on the basis that I have leukaemia and she is my nominated carer outside of hospital, and it was granted.
Soon after I received a Jury Service notice.
I requested a deferral on the basis that I have leukaemia and am in hospital for the period involved.
It was knocked back!!!
The situation was resolved with a phone call to ask why I was knocked back, and a followup medical certificate from the hospital Haematologist.
Birthday cake event.
During the Bone Marrow Transplant period I had my calendar birthday, as compared to my rebirth birthday of receiving the marrow transplant.
Unexpectedly I was surprised by a dozen nurses at my ward door holding a large chocolate coated ice cream cake and singing happy birthday to me!
They asked me to plunge a knife into it and make a wish, which I did, and they departed to complete the cutting it up process.
They didnít return!
In their excitement they divided it up in the tea-room but forgot to return with a piece!
I was later given a golden gaytime paddle pop as a token of their oversight!
It caused me to chuckle somewhat as I appreciated the thought, and am more than happy to acknowledge by donating my piece to the hard working angels that they are.
To sum up:
At the 6 month mark Iím making good progress so cautious optimism abounds, with an awareness that for the next couple of years Iím still in a fragile situation that can go bad quickly.
Oh, and my hair is growing back already!
I'm so glad the news seems to be about as good as it gets!
Thanks for the updates, they make fascinating (if a little morbid) reading. And thanks for the literal laugh-out-loud stories like the jury duty and birthday cake incidents.
The tenth hook in a row seems to be holding - keep up the good work!
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