Wednesday, 31 January 2018

Running

In through a doorway she brings me white gold and pearls stolen from the sea
Running To Stand Still - U2

Baseline ... KFLC = 750 ... κ/λ = 141 ... Hb = 10.0 ... Neutros = 1.3 ... Plasma = 60% ... 

So, two trips to hospital today. First to get stabbed. Second to get poisoned. (i.e. blood tests and prescriptions.)

My blood counts have deteriorated. Light chains and κ/λ ratio are both up, and my haemoglobin is down. My anaemia is getting more severe (and I don't expect the drugs to help, in the short term).

I'm pretty alarmed to find that in my bone marrow biopsy 60% of the cells are plasma. If I didn't have myeloma, it should be <5%. More than half of my bone marrow is myeloma. Yuk. No wonder my bones ache, my blood counts are lousy and I don't feel great. (It's also a substantially worse state of affairs than when I was first diagnosed, and this result would be a sufficient reason, in and of itself, to trigger treatment.)

But regardless of the blood counts and level of plasma infiltration, my bone pain is getting worse by the day. I've had to increase my doses of both oxycodone and codeine, to try to keep it at bay.

It's pretty clear we need to get started.

Today is Cycle 1, Day 1. I've passed all the tests. Get set. And, we're off. The finishing line, for this first part of the treatment will be late May, or mid July, depending on how I get on.

Here's my typical weekly medication (I made a chart so I don't forget to take things!)

And here, in 3D ...

I've already taken my first load of DEX ... a long night beckons ...

4 comments:

  1. My heart goes out to you and Marissa and of course the boys. We all know how tough the next few months are going to be. Is it worse knowing what to expect? It was here. I hope the treatment works well and quickly. I'll be keeping an eye on you. X

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    1. Thanks Lorna. We’ll get there. Yes, knowing the whole path in front is, in some ways, worse. Last time I was so ill it all went past in a blur. This time I know it is a year of constant treatment, one way or another. Still, I know I am tough enough to do it.

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  2. I have had lots of problems with Anaemia during my Myeloma journey and I think this has a big impact on quality of life in terms of energy and ability to function. This link gives some explanation: https://goo.gl/ZdASuj as it is a very complex topic.

    If I was starting a new cycle again, for peace of mind, I think I would still ask for them to check my Iron, B12 and Folate levels even though the root cause might be very likely something else e.g. plasma cells, kidney hormones, chemo, or paraprotein etc. My folate levels were very low before diagnosis even though I had a good diet, too much B12 in supplements or a lack of absorption can also crowd it out.

    A nice piece of steak, or a plate of liver now and again might help too.

    Unfortunately, we are very dependent on the Doctors wanting to check these things.

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    1. Yes. I’m sure my anaemia is a consequence of the myeloma. I’m concerned that the treatment - esp thalidomide - will make it worse in the short term. But hopefully that will be short lived and soon, with the myeloma suppressed, my marrow will create more red blood.

      I think anaemia can be microcytic or macrocytic - different problems, requiring different solutions. Last time I attempted to get a deeper understanding of my issues, my anaemia was macrocytic, which means it would not be responsive to iron, but maybe to B12. However my consultant told me that trying to solve it through B12 supplements would be a waste of time - the cause was the myeloma, and so the remedy must be to tackle the myeloma.

      So I’m relying on the drugs, to get it right over time.

      Living with ongoing anaemia is not nice, is it? It’s a stealthy, sneaky symptom, presumably the basis of my fatigue, and I imagine it knocks a little bit off my performance of every physical task.

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