Saturday, 5 August 2017


Infinite sunrise (Blelelele-lelelele-leleleleh. Aha ha ha. Ah ha ha. Ooh yeah.)
Perpetual Dawn - The Orb

Checkup ... KFLC = 464 ... Hb = 11.2 ... Neutros = 1.1 ... κ/λ = 82 ...

Every myeloma journey is different. Mine appears to be quite considerably a mind game. I walk down to clinic having steeled myself for the inevitability of restarting treatment, and concerned primarily with when it will begin and what protocol I'll be on.

To be told that my light chains have dropped (by nearly a third) is - to put it mildly - a surprise. This means the treatment conversation can wait a little longer, my κ/λ having dropped well below the 100 threshold. The registrar doesn't have anything to offer on the whys and how-comes, and I'm beyond asking. It just is.

I have no energy, either, for guessing the next instalment. Maybe this result is a blip and next month I'll be preparing for chemo. Maybe the last few months were the blip and my light chains will go up slowly again from here. Maybe this is a new trend and my light chains will fall further. No-one can know, and I don't much care to pretend to have any inkling. We'll find out, soon enough.

The doc signs me up for another MRI and a BoMB in a couple of weeks. (So that's something to look forward to!) I've been feeling intermittently well and not, of late. I'm certain the myeloma is lurking about, but if it chooses to keep its distance, I'm OK with that.

"Sunrise with phone mast" (view from my bedroom window)
My myeloma is challenging to comprehend and process. It leaves me permanently on edge, perpetually a month away from treatment. I've been relapsing now for 2 whole years. But I'm not complaining. It's better than some of the alternatives. With absolute horror I discovered, a few weeks ago, that one of my friends, whose myeloma journey started simultaneously with mine, and who I have always considered to be my 'myeloma twin', has died. I'm horrified for her: she was younger than me; and at the end she endured plasma cell leukaemia - a tough way to go. And I'm horrified as much for myself; one can't have a much more intrusive reminder of one's own mortality. I will miss her companionship. I hope her family and friends can find some peace.

After clinic, we drive to Sussex. I'm just unloading our bags in the rain when a car careens greasily down the mud flecked lane, mounts the verge opposite me, rolls onto its roof and then cartwheels end over end down the hill. It lands on its wheels, but the roof is stove in, and much of the contents of the car - papers, CDs - are strewn across the road among the smashed glass, light fittings and bumpers. I walk towards the steaming wreck, with a sick feeling in my stomach of what I'm about to witness and have to deal with. And then - improbably - the door opens, and the driver just steps out. He is very dazed, and has a lot of superficial lacerations, but he is basically unhurt. As he walks toward me he casually picks his phone up from where it is lying in the road. I take him into our house, to sit down, stop the bleeding, and wait for police and paramedics. It is chaotic: our luggage is all unpacked and underfoot; there's blood on the floor and on the buttons of the telephone. Our very new puppy is somewhat awed by all the high vis jackets of the procession of visitors who proceed to walk in, accompanied by plenty of rain and mud. But as the driver sits and calm returns, I'm reminded that life always has space for miracles (and of the amazing safety specification of modern cars).

I hope he enjoys waking the following morning as much as I do.


Ed (Blog Adminstrator) said...

Sending support and encouragement from the US. Quite a story about the accident you witnessed and certainly one of those cosmic events that puts it all in perspective. Not sure what new MM treatments are approved in the UK, but as you probably know, there are a lot of new arrows in the quiver and I hope that one of them can provide you with a long remission and limited discomfort. Feel free to PM contact me privately if you ever want to talk in either digital or analog.

Alex Bicknell said...

Thanks Ed. I'm hopeful I might get on an ixazomib trial (augmented conditioning for sct, plus consolidation/ maintenance). Will see when that time comes. I'll let you know!

Ed (Blog Adminstrator) said...

Are you also on Revlimid and Dex? If so, I'm curious as to why they are going with Ixamomib rather than the more conventional approach of Velcade with Rev and Dex (RVD). I guess Ixazomib is more convenient in that it is administered orally. But it is less well studied, from what I've seen. But I'm no expert.
Anyway....sending best wishes.

Alex Bicknell said...

Not on anything, right now. Not sure why the trial is ixazomib - they're testing its effect in consolidation etc. I've been on a similar previous velcade trial, and I know of a carflizomib one too.

Alex Bicknell said...

But in answer to your q, yes I thin the protocol would be IRD