Kicking AML’s Ass: Out of the woods, I can see the pub in the distance

Posted by @ 4:54 pm on Tuesday 12th July, 2016.

Cycle 4 has finished.

I'm not yet discharged back to the care of my GP (that's a few months away) but the hospital visits are now tailing off - one outpatient appointment per fortnight until further notice.

The official line is that I'm in a period of counts recovery which should lead to remission... after previous chemo cycles that recovery has taken a few weeks, but due to the cumulative effect of high-dose cytarabine cycles this latest recovery could take several months, and we can expect set-backs if I catch any bacterial/viral/fungal infections.

To give some idea of how slowly the counts are recovering, here are comparative plots of the neutrophil counts for the latest two cycles. For the avoidance of doubt, we're aiming for a minimum count of 1.50 x 109 cells/litre for minimum-acceptable infection-resistance. 4.50 x 109 cells/litre would be a good mid-range long-term target...

 

 

The red-count plot follows a broadly-similar pattern (at the latest check it was still low at about 90 grammes/litre, climbing, but not very quickly), which means I'm at home with many things to do and not much energy to do them. Mind you, I do have to try... I need exercise in order to convert belly to muscle. Furthermore, in theory, more exercise should mean faster recovery.

And there's more good news! I now have so much head- and facial-hair that I had to have it trimmed to keep it in check. So now I look less like Uncle Fester and more like Great Uncle Bulgaria 🙂

4 Responses to “Kicking AML’s Ass: Out of the woods, I can see the pub in the distance”

  1. alan.sloman says:

    Well Sir!

    This is indeed excellent news. Forgive the tardy reply - I've been away dog sitting with no laptop. My own red cell count has now risen from a low of 87 pre-transplant to the present giddy heights of over 130 - but it's taken three years to get there. But the difference is incredible.

    Take it steady, and the very best of luck to you Stef.
    🙂

  2. BG! says:

    Thanks for that, Alan.

    Hb counts are strange beasts, no?

    In general a "bag of reds" will increase my count by between 8 and 15. But back in the dark days of March, whenever they gave me unmatched (pooled) platelets and my body rejected them my red count would drop by between 10 and 20 within hours. At one point their antics with pooled platelets had knocked my red count down from a steady 91-93 to just 58 🙁 After the hassle of the reaction and the pain, they had to correct matters by giving me more platelets and also 3 bags of reds just to get back to where we had started, and then more platelets. Proof indeed that being HLA-matched for platelets is NOT a false economy.

    One bag of HLAs would have saved 1 bag of pooled (rejected), 1 bag of HLAs (for recovery), another bag of HLAs (to get the originally-intended increase), 3 bags of reds (to replace those wiped out by the rejection process), several hours of discomfort, about 3 extra days in hospital, and often the removal of a PICC-line which means that a new one has to be inserted (usually after a few days of multiple attempts at cannulation)... on all levels the decision should have been a no-brainer... but on paper the economy of using pooled rubbish must have been an overwhelmingly-attractive option to a cash-strapped decision-maker.

    I found that for me a red count of 90 is a bare minimum if I want to do anything remotely active. On June 21 I was at 76 and just walking around the hospital was knackering. They gave me a bag of reds, the count went up to 90 and I suddenly felt supercharged.

    It had dropped again a week later, only to 88 but that was enough for me to be out of energy after walking up our stairs. I coped for 4 days but found that I couldn't exercise properly so I begged for another bag. They were reluctant to provide the goodies, preferring to let recovery take place unaided, but could see the sense in enabling me to exercise, it's not as if I am one of the bed-bound who would be happy to just exist.

    Since then I've been holding at about 90 to 95, it's enough for me to get a few multi-mile on-the-flat walks in each week and to do a bit of gardening in little-and-often instalments, but it takes a while to recover from such exertions. Regardless of their expectations I intend to be walking somewhere in Cumbria before the end of autumn, even if I have to blag another bag, but hopefully I'll be a lot closer to your 130+ by then.

    I think I'll hold off on the cross-Scotland thing for a while longer though. Maybe I'll have a pop at the 50th? 🙂

  3. alan.sloman says:

    @BG! -
    It would be very worthwhile you putting this on paper and sending it to the hospital. It is always more expensive in the long term to bodge a fix. This should be shouted from the roof tops!

  4. BG! says:

    Originally Posted By alan.sloman
    @BG! -
    It would be very worthwhile you putting this on paper and sending it to the hospital...

    Already in progress, my friend.

    One of the triumvirate of consultants took great pride in declaring that I would soon receive a comprehensive report detailing my treatment, progress and prospects for the future. She was temporarily struck dumb when I told her that they and the nursing team would soon be receiving a similar report from me 🙂

    My Nurse Specialist (Key Worker) thinks that the notion of a patient-report is a great idea and will consider using mine to devise a post-treatment questionnaire for other cases.

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