Friday, 8 December 2017

A plan for 2018

You understand, I got a plan for us. I bet you didn't know that I was dangerous
Dangerous - Big Data

Checkup ... KFLC = 676 ... κ/λ = 122 ... Hb = 11.6 ... Neutros = 1.16 ...

Today, as I expected, I’m told that my next appointment is probably the start point of treatment. I’ve been told this before, but they seem to mean it this time. They’d have started today, but for the practicalities of Christmas: low staff levels for them, domestic priorities for me.

I’ve been experiencing a reasonable amount of rib pain and quite a few muscle spasms, these last two weeks. I’ve had to increase the frequency with which I take painkillers, and I’ve started taking amitriptyline again to defuse the spasms. The doctor seems pretty certain that these symptoms are evidence of progressive disease.

In terms of blood counts my κ/λ ratio is (again) above the threshold which separates smouldering myeloma (no treatment required), from symptomatic (or likely to be symptomatic in the very near future) disease. The change in the ratio is largely because my lambda levels are down - which could itself be a sign of mm crowding other cells out. Also of concern is my low calcium - for which I have been prescribed vitamin d; and low neutrophil level, which puts me at increasing risk of infection. The consultant says it will be easier to treat me - especially in the context of the trial - if I can avoid contracting pneumonia (or something else) at the same time.

So I expect to sign the consent forms on 5th January, and then there’ll be 4 weeks of tests, meaning I will start treatment proper at the beginning of Feb. This would mean SCT somewhere between June and September, depending on how things go. (And I’ll be up on my feet by next Christmas, yay!)

It doesn’t take long, living with rib pain, to remember exactly how bad myeloma symptoms can be. If the symptoms persist, I’ll be keen to just get on with it now.

5 comments:

  1. I don't know what to say other than to wish you luck and let you know I’m following your progress, Alex. Weird times, eh? Best wishes, Jet x

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  2. ‘Onwards and upwards’ as the Kiwi’s say…

    Life can be hard when there are limited choices, but the dilemmas of choosing can also be very tough on the mind.

    In terms of pain control, I was on Zomorph 2 x 30mg, but I was not too keen on taking strong Morphine and did not like the constipation so moved to Gabapentin and Codeine Sulphate 30mg (2/3 times a day on demand). I stopped the Gabapentin after a while as it wasn’t doing much. My back pain stopped after my SCT so I no longer needed the Codeine. A fellow long-term Myeloma sufferer suggested doing Zomorph 10mg twice a day taking extra as needed. If my back pain returns and it is persistent, I may try Zomorph 10mg next time. Be careful with Morphine, the withdrawal symptoms can be awful.

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    1. I’m on 2x30mg codeine now, which is ok as far as it goes.

      I had sevredol (zomorph by another name) before, but oxycodone worked better for me. Fortunately, I didn’t find it hard to stop. When things escalate, that’s what I’ll ask for!

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  3. Hi Alex,
    Hope you can get the pain controlled.
    Good luck with the trial. Which one is it?

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    1. Myeloma 12 - ITD and then SCT. It’s randomised twice - first for augmented SCT, and second consolidation/maintenance.

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