|AML & Climbing - a random info thread.
AML & Climbing - a random info thread.
ďI'm doing OK, as many people don't make it into the 2nd chance clubĒ...
~ IdratherbeclimbingM9 ~ 12/01/18
(Quote from CABGs & Climbing - a random info thread.)
~> I now need to update this quote to; ďmany donít make it into the 3rd chance clubĒ.
Chockstone has been pretty quiet for a while now (mea culpa!), and thereís a couple of threads Iíve been meaning to reply to, though I hope you indulge me my tardiness as Iím good at distraction lately.
Acute Myeloblastic Leukaemia:
Iíve recently been diagnosed as having it.
Iíve been told that left untreated Iíd be dead inside 4 months.
A sobering thought indeed, while I still have many adventures remaining on my agenda; not to mention the inconvenience to the climbing partners and motorcycling partners that I have lined up for said adventuresÖ
AML is a cancer that starts in the bone marrow where blood cells are made. It affects specific cells and grows quickly.
In AML the marrow makes unhealthy stem cells called blasts, which crowd the marrow and it canít make enough healthy cells (haemoglobin, white cells and platelets).
Symptoms include tiredness, weakness, weight loss, fever, night sweats, infections, easy bruising and looking pale.
It is diagnosed using blood tests along with bone and marrow biopsies.
In most cases the medical profession doesnít know what causes AML. There is usually a mutation in the genetic material of growing blood cells.
Thereís no way to prevent AML and you canít catch it or pass it on.
Some statistics from the Leukaemia Foundation Ö
* 0.8% of all cancers are AML.
* 80% of people diagnosed with AML are aged 50+
* 1042 Australians diagnosed each year with AML.
* Average age of diagnosis is 64.2 years
* Risk of diagnosis at 75 years of age is 1:486 for women, and 1:320 for men.
* Risk of diagnosis at 85 years old is 1:254 for women, and 1:161 for men.
Iím currently in Royal Melbourne Hospital Haematology Ward undergoing chemotherapy treatments, and have been told Iím likely to be here for 6 monthsÖ
I was patient transferred from Albury Base Hospital to here a month ago.
The process of my being diagnosed with AML was convoluted to say the least and Iíll elaborate more on that later, but in the meantime Iím starting this thread as a potential information source to other climbers who might end up with a similar issue, and also as a lifeline to the outside world to help me keep my sense of perspective while undertaking this adventure without a compass or topo-map, though I do have plenty of belay partners for it!
Side effects of chemotherapy are not always pleasant, and there will likely be days ahead when Iím not going to be up to replying, but I will catch up as and when I can.
Knowing the vagaries of Chockstone Iíll also break my posts up into short bursts, as many trip report style posts get auto-chopped by the system anyway.
Thatís a rough road. All the best M9, thoughts with you.
f---, sorry to hear mate.
Very sorry to hear that Rod. We are heading away tomorrow, will try to touch base when we're back.
Wishing you the best M9
That sucks. I don't think I've got the right words to convey this.
Rod that's horrid. Hope the drugs aren't knocking you to bad.. feel for you. I can crawl in and out of a cliff as avspectator now.
Life can be such a bugger Rod. Look after yourself mate.
My being diagnosed with AML was incidental to another investigation.
I had an annual checkup with my local GP early this year, who suggested that I should also have a checkup with a Cardiologist since I hadnít done so for the last few years post CABG procedure due thinking that this was now history and unnecessary.
Cardiologist did a Stress-Echo test and said I have a second set of some unusual ectopic heartbeats happening at a high workload rate, and referred me to St Vincents Private Hospital Melbourne for an angiogram (done by an Interventionist-cardiologist), to checkup on the mechanical aspects of my 2017 CABGís procedure.
Basically a process of elimination to clarify my situation.
Angiogram done and all was okay, so I was referred on to an Electro-cardiologist to investigate potential heart electrical issues that may be causing a second set of ectopics to manifest.
I was discharged late the following day and spent the evening in a B&B to return to regional Vic the next day.
Late that evening I experienced an unexpected heamatoma at the Angiogram entry site.
Phoned St Vincents who advised me to get an ambulance to nearest hospital.
Ambulance waiting time was anticipated as being 2 plus hrs and 000 suggested getting myself to nearest Accident & Emergency Hospital, as it was only a few kms away.
10 pm I arrived at Footscray Public Hospital A & E, and waited till 3 am to be told three things by the A&E Dr.
1. Your heamatoma appears to be self rectifying.
2. You have covid!
(The only place that I could have caught it was St Vincents Hospital).
3. You have a blood anomaly that confirms the sample taken at St Vincents, because weíve cross referenced them.
I was discharged from Footscray Hospital and returned home to Regional Vic for isolation.
Iso finished, a negative RAT, and I submitted my hospital report to my GP who referred me on to a Haematologist.
A bone and marrow biopsy was done in the morning, and at 7pm that night (while home again), Haematologist phoned me saying attend A&E at Albury Hospital for admission, Iíll meet you there with the paperwork, and be prepared to be transferred to Melbourne!
What have I learnt?
Angiograms are tricksy things! Last time after having one I ended up with CABGís x 2, and this time with covid and AML!!
Thanks freepete, davedave, gfdonc, bones, ajf, ww&s, and M75.
Itís certainly come as a bolt from the blue, and my head is still spinning trying to stay up to date with the fast changing pace of events.
The bright side is that it couldnít have been caught any earlier and my fitness level is standing me in good stead to give me the best chance of remission.
Statistically those who get treatment early and in heavy dosage have the best results, and so far Iíve exceeded expectations for how Iím coping with the treatments, a particularly pleasing result, given initial conjecture over treatment for me purely based on my age alone.
It pays dividends not being a couch potato!
Hi Rod, that's tough news. Six months of chemo is rough enough without having to be away from home as well. One of the problems we are exposed to living in rural Australia.
Statistics are wonderful things especially when they change your major life goal to be "I am not an outlier".
All the best for your treatment. Will try to make the occasional post to help the time pass.
Rod, what a bugger of a diagnosis. My dad was diagnosed with CLL earlier this year; though so far it seems relatively benign (fingers crossed).
I hope you and Wendy are able to keep in good spirits.
If youíd like a visit let me know, Iím in town a few times a week.
Chemo is rough. All the best for the road ahead Rod.
Thanks kieranl, pi & Wendy.
Regarding visitation; RMH Haematology Ward is possibly the strictest place for rules that I know of, due covid implications for patients undergoing chemotherapy - effectively the most vulnerable of the vulnerable.
Iím now 2 months post covid and have had at least 10 consecutive negative CPR test results, which means that Iím no longer shedding virus, but, Iím still in an isolation room and not allowed visitors (including my wife and daughters), plus the fantastic staff who attend my needs have to wear full ppe gear which is all single use only and gets discarded* into the toxics bin as soon as they leave my room.
(* A sad thing to see, as Iím a long time supporter of minimal footprint living, but I understand the need for such action.)
On the topic of isolation, I havenít been the most compliant of patients, as I drew a line in the sand when they also wanted me to live under a plastic tent enshrouding my bed, with an extremely noisy pressurising air filter running 24/7 at bedhead.
My logic is that Iím no longer positive covid nor am I shedding, plus Iím happy to comply with isolation, but isolation within isolation is a step too far, and sleep was almost impossible with the filter running.
The issue was discussed several times with several different staff (different shifts saying much the same things), but after coming to an agreement with the head person itís been a situation of agreeing to disagree and letting sleeping dogs lay low.
Iím not a total recalcitrant however, because if push hadíve come to shove, I told them that Iíd be prepared to camp on the dunny floor in RMH if it meant a favourable outcome to my condition!
I'm currently between chemo cycles and have been allowed to 'recuperate' at 'home' in Leukaemia Foundation House Of Hope (across the road from Peter MacCallum Cancer Research Hospital), with my wife, and visits from our daughters.
We're still treating our circumstances as very much in isolation and avoiding interaction with the world as much as possible due my blood counts are the bare minimum to allow for such an escape.
Uninterrupted sleep has been great, as have also been a couple of short walks, which have confirmed what I suspected - the recovery road is going to be a long one.
The doctors at RMH Haematology are unreal. Even when not on duty I've received followup calls and emails from them, making sure all is okay with me...
Iím very humbled and find it hard to express the gratitude I feel for such dedication.
Escape will be short lived as my appointment agenda is full on for the near future, with monitoring of my blood samples continuing apace, and the next 21 day Cycle starting soon.
Chemotherapy treatment is broken up into sections known as;
Induction Cycle One
Induction Cycle Two
Induction Cycle One (lasting 21 days), for me consisted of three types of chemotherapy administered for specific periods of time.
Days 1-7 Cytarabine 100 mg/m2 via CIV
Days 1-3 Daunorubicin 60 mg/m2 via IV
Days 8-21 Gilteritinib tablets to target genetic mutation FLT3
I've been informed that Induction chemotherapy is the 'worst' of it, ... though I've also been told that the dosages are no less potent in Cycle 2, as long as they assess patients as being able to handle it.
The last week has been fairly ordinary, but if that's as bad as things get then I'm doing okay, and bring on Cycle 2, I say!
Iíve been accepted into an International Trial that may give me a better result for the treatment Iím receiving, and the Gilteritinib is specific to the Trial which differs from Ďnormalí usage of it a bit, in terms of amounts and duration.
I am stoked to be in the Trial because they follow up on participants for thirteen and a half years(!), which says something about their expectations of achieving Remission success.
I regard it as like having an insurance policy and the price of having bone and marrow biopsies etc ongoing is little enough compensation for the close monitoring that Iíll receive, ongoing.
The HO156/AMLM24 Trial is funded by The Leukaemia Foundation at $5,000 per patient for a period of four years, and the Gilteritinib involved is not on the Australian Pharmaceutical Benefits Scheme, and costs $27,000.
Less than 20% of Australians wanting to access a Clinical Trial are able to do so, so I am extremely fortunate within the confines of my affliction!
For an unexpected malady I reckon Iíve fallen on my feet.
So, like an adventure climb, I reckon I've now passed the psychological crux and just have the grunt work to go till topout.
I'm also working on my new disguise.
Instead of projecting the hoary old white bearded climber / biker image, I'm going for the ocean-going-clean-skin-tadpole look*, to confuse anyone stalking me!
*Hair loss (all over), is happening at a rate of knots!
Shocking news Rod and i am so sorry to hear. Not sure what i can say other than my thoughts are with you to pull through. Your comments and banter on this forum have always been enjoyed.
Very best wishes John C.
Awful new Rod. I wish you strength and luck for your journey ahead.
Thanks for your mentorship and organisation of Mt Buffalo climbing weekends over the years. I have a memory of you one time of eating a single lemon by itself as a "meal". Is that right or am I getting old as well!?
Awful news Rod... I can't really think what to say.. your posts above still convey an irrepressible optimism despite the circumstances. I feel like this attitude will help you just as much as your physical fitness. I think I'm going to say no if I'm ever offered an angiogram :)
Thinking of you Rod, hang in there mate.
6 months of chemo sounds shit house, but probably still better that a couple of climbing trips I've been on.
Sorry to hear of a comrade down.
All the best with dealing with it M9.