Posts tagged 't-MDS'

Perplexed

Posted by on November 22nd 2018 in Health, or lack thereof, Video (YouTube, Vimeo etc.)
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Another blood-test and consultation today. The results were a bit of a mixed bag... platelets, WCC and neutrophils have all risen a tad but remain well below bottom-limit. Hb has dropped again and is now slightly below bottom-limit. They didn't give me a result for serum ferritin but from the way I feel I suspect that it has risen again. The nerdy counts charts have been updated.

The consultants aren't sure what's going on. The previous three times I was there I've been told that it might be t-MDS (therapy-associated myelodysplastic syndrome), then that t-MDS had been diagnosed, then that I have t-MDS. Now I'm told that I have neither t-MDS nor relapsing AML. In short, they know what it isn't, but they don't know what it is.

I was told that I am now over their two-year hurdle so it's likely I'll make five. I beg to differ - I feel like I'm stuck with one leg either side and my nuts squashed against the woodwork.

I may ask for a second opinion from someone who claims to know about what's known and what's not:

We're in "watch & wait" territory. Another blood-test three weeks hence, then a blood-test and consultation three weeks after that.

 

If there's one lesson to be learned, it's this:

When I get concerned about a result that's much worse than the trend, I'm told that it's a blip because it's out-of-context...

But when they triumphantly announce a result that's ever-so-slightly better than the trend, I'm told that it's a sign of recovery even though it's out-of-context.

One Up Four Down

Posted by on November 8th 2018 in Health, or lack thereof
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Another blood-test and consultation today. Platelets, WCC and neutrophils have all dropped again - that's now five consecutive drops. We've no idea what my body is doing with my iron intake - this time Hb has joined in and is dropping towards bottom-limit, yet serum ferritin continues to rise with no reasonable explanation forthcoming from the haematologists. That said, the Wikipedia page for ferritin does say that "concentrations increase drastically in the presence of an infection or cancer".

The nerdy counts charts have been updated.

I avoided another Bone Marrow Aspiration with Trephine, but I'm booked in for another test and consultation two weeks hence.

Back on the meds though - Aciclovir for 35 days, in a belated effort to shift the viral infections that I've had since June:

 

One Up Three Down

Posted by on October 11th 2018 in Health, or lack thereof
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I went in for yet another blood-test and consultation today. They say that there's still no sign of the AML returning but the blood-counts don't look good. Platelets, WCC and neutrophils have all dropped again - that's four consecutive drops - and they're all now well below their normal ranges. Inexplicably, my serum ferritin level has risen from 165 × 10-6 g/L to 423 × 10-6 g/L which puts it way above where it should be.

The first evidence of reduced counts was picked up and comprehensively ignored way back in JUNE when, after LRI had advised me to see my GP about my "late effects", my GP arranged a full blood test. That test was conducted in Week 26 at a Warwickshire hospital which sent the results back to the GP and to nobody else. My GP's stand-in eventually phoned me in August to discuss my lipids results and not much else, but nobody there forwarded any results to LRI. As far as I knew, everything else was fine. And LRI were told nothing.

But ELEVEN WEEKS LATER an LRI test showed a counts drop and that set me to wondering what else was in those June results. Last week I raided my GP's surgery to get a copy of the June test results and when I read them I was gob-smacked - the report clearly showed significant drops and out-of-limit results for key haematology indicators. Earlier this week I sent LRI a full copy of the results... FIFTEEN WEEKS LATE.

 

 

So now it's looking like Myelodysplasia will be my early Christmas present this year.

I'm slated to have another blood test and consultation four weeks from today, and if they find that the count drops have continued they'll probably do another Bone Marrow Aspiration with Trephine, and if the results of that look dodgy we'll be looking at a PBSCT. Looking at the rate that the counts (especially the neutrophil counts) are dropping, I think that four weeks will be cutting it a bit fine.

Well, that’s got them confused

Posted by on September 27th 2018 in Health, or lack thereof
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I went in for another consultation today, to discuss the findings of last week's bone-marrow aspiration. I was told that they'd found nothing untoward in the samples and that everything looks fine in there. No sign of the AML returning. As you can imagine, that was a huge relief.

But the results of today's FBC test showed something which I was expecting but which threw the locum consultant... all four main indicators had fallen again since the previous test of 13th September 2018. Platelets and WCC are now even further below bottom-limit, and I wasn't given a value for the neuts count (later I found out that they are almost down to bottom-limit). Hb is still in limit but is trending downwards like the others. Infection-markers are at a two-year high.

To be told all that and then be told that it's not a problem was a bit of a jaw-dropper.

The locum consultant couldn't see the huge cold-sores up my nose, and when presented with the under-arm rashes she asked me if I had shaved my pits... yeah, I'm hairy all over (apart from my head and eyeballs), so why the feck would I shave only my armpits? She didn't want to know about the dermal necrosis that the previous consultant had considered to be a matter of some concern. After she had not answered a simple direct question regarding my results, asked three times in as many minutes but rebuffed with prattling on about something else to avoid having to answer, and after I'd been given an appointment to come back in four weeks, I was in danger of losing my composure and so had to leave.

I wasn't happy - I couldn't figure out why the first drop in counts merited a two-week rematch and a BMA, but a drop further into the danger-zone with no explanation merited a four-week rematch. I went off to hunt down my Leukaemia Nurse Specialist who never bullshits me.

He was elsewhere (on a well-deserved holiday) but one of the other Nurse Specialists picked up the ball/hot-potato and ran with it. And boy did she run well! She listened, understood, coped with my anger (not directed at her), installed us in a comfy room with a hot cuppa each and went off to get things sorted. On her return she explained everything in terms that we understood, filled in the undisclosed blood-test results, told us that the three prime consultants thought that a four-week wait would be inappropriate, and declared that she had managed to rearrange the consultation for two weeks later rather than four. She was brilliant!

So now we're pondering the fact that, despite the current lack of any hard evidence, they think we might be looking at the onset of something new... Myelodysplasia. From where I stand the symptoms seem to fit. And I've been telling the consultants and my G.P. about those symptoms for months on end. No doubt there will be more tests to confirm or discount other possibilities.

And then there's the irony factor... the next consultation will be on the day that I was bumped from a few weeks ago.

Smoke me a kipper...

Holed just above the waterline

Posted by on September 18th 2018 in Health, or lack thereof, Video (YouTube, Vimeo etc.)
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Blood counts were a bit off at last week's consultation - platelets , WCC and neuts were the lowest they've been for over two years, with the platelets and WCC both under their lower acceptable limits. With that in mind, they had me in for precautionary tests today.

It wasn't the usual "needle in the arm" job:

https://binged.it/2xtV4Km

As you can imagine, it is, literally, a pain in the ass. It's not the aspiration that hurts, it's the trephine.

Results next week, unless they find something that needs urgent attention.

Cautionary note: the YT clip can be viewed in a Bing video search without any restriction, but viewing it directly on the YT site requires a Google sign-in for age-verification and then throws up a "This video may be inappropriate for some users." warning.