Thursday, 24 May 2018

Up a bit

Lately I’ve been curious. Wondering, do I pass the Turing test?
Normalization - Parquet Courts *

If I end off repeating the same thing in several conversations, it’s probably a sign that I should have posted it here. So... an update, particularly for those who have spotted me out and about a bit more than my recent version of “normal”.

The last week I have felt significantly better. Like I’ve emerged from a hole. I don’t know if this is just a good week, or if I’ve turned a corner. But it’s welcome either way.

I’m only half way through this stage of my treatment, so a long way to go yet. One of the difficulties, at the outset of treatment is that many of the side effects (anaemia, immune-suppression, pain) are the same as myeloma symptoms. In the short term, it makes things worse. It may be that my myeloma is now a bit more under control (I'll have some new numbers in another week or so), and thus I’m simply more able to tolerate the treatment. If so, double good. The next 3 months may be better than the last 3. A relief. The last 3 have been awful.

There are still problems - mostly fatigue, bone pain, and posture - and I’ve still got the DEX to deal with. But compared to just a few weeks ago, it’s very much manageable. (A month ago, I was just home from my last internment in the haemo ward. It's really not so long.) And I’m able to think clearly, without the fog, which is a massive improvement. Body and mind. Both important.

It’s half term next week. We would normally head for the airport, but cannot. Instead, we’re off to south Devon, which should be lovely. And I’m hopeful I will be able to really enjoy it, rather than just exist, which was the limit of my ambition until only a few days ago.

Living - as I have been - with the goal of mere survival is all very "well" (as long as success isn’t really in too much doubt). But it isn’t much fun. Now, fun seems attainable.

* Lyrics choice for those with a taste for art-punk. That's a few of you, but maybe a select bunch. Everyone else... get with ;). While we're at it, here's one for anyone who has recently - as I have - been watching Wild Wild Country (on Netflix). About the Rajneeshee commune in Oregon in the 80s. Obscure subject matter, but I recommend it, if only to remind oneself how strange the world can be, and that our own destiny is as yet unwritten.

Still you’re steady with me always carrying the melody. Smiling all the while the paint chips off my mala prayer beads
Mardi Gras Beads - Parquet Courts


  1. Hi Alex, glad to hear things are going better, and you are remaining positive. I was curious to know what level of response you got after your previous trial e.g. getting to zero paraproteins, normal ratio, < 5% plasma cells, normal immunoglobulins, stringent response or VGPR etc after ASCT? It will be interesting to see if you get a comparable or better result this time. Also, I do not think you had any maintenance after last time? Will the new trial provide for this after your next ASCT?

    1. Hi Alex, please ignore the above comment, I think you explain your specific type of MM in your September 2012 post, so my questions are probably irrelevant. Stephen.

    2. Hi Stephen

      Techy questions ok!

      I got “VGPR” last time, with KFLCs dropped from 1500 to 50. (Light chain myeloma - no PPs.) My kappa-lambda ratio was never normal - at best it was around 10-15 (normal is <2). I had no maintenance. I was in remission for c.28 months and then c.30 months relapsing before beginning treatment again. So just shy of 5yrs without treatment.

      It seems certain I will proceed to transplant on lower KFLCs this time than last. (Front line induction reduced my KFLCs from 1500 to 500. This time we started at a lower level and so far they’ve gone from 750 to 370, with more cycles to go.). We’ll have to wait and see the outcome - my consultant agreed when I observed that the data which says average 2nd transplant response is less good than the 1st, predates most of the modern treatments. There’s no reason (except natural pessimism) not to hope for as good again as last time.

      My blood counts never quite returned to normal in remission (at best I was something like Hb = 12.0 , Neutros = 1.8). I’m not sure where my % plasma bottomed out - I think it was <5% but myeloma was always still detectable in my biopsies.

      The current plan has potential for “augmented” transplant (taking ixazomib alongside the melphalan) and for maintenance (with ixazomib, until progression). Both are randomised, and I don’t yet know which half of each part of the trial the computer will assign me to.

      I’m optimistic - which just about offsets the grimness of being in treatment!!!