Monday, 15 April 2013

VGER

And even if the morning never comes, my hands are blessed to have touched the sun. And when I can feel with my sun hands, I promise not to lose her again
Sun Hands - Local Natives

Day 39 : Very Good Emotional Response

I got a letter today with my light chain score.

And now for the science bit... (as they say in shampoo ads, before going on into some pseudo gobbledegook that bears as much resemblance to science as I do to Usain Bolt). Light chains are a component of our immune system. It's normal to have around 20mg/L swilling around in your blood, but not much more. Excess is a sign that myeloma cells are at work, producing paraproteins (proteins you don't need or want). Light chains can also be a problem in their own right since they cause kidney damage. In my case, kappa light chains are the only accurate way to measure my myeloma. At diagnosis my light chains were almost 1,500mg/L. That's actually not particularly high, by myeloma standards. My myeloma clearly doesn't secrete many light chains, in proportion to the amount of trouble it causes. (Some people have myeloma that produces almost no light chains at all. Good news for their kidneys, but a real problem for disease monitoring.) Before my transplant, my light chains were down to 500mg/L, which counts as Partial Response (PR).

Two weeks ago (drum roll) they were at 59mg/L. This counts as Very Good Partial Response (VGPR). It is a good prognostic for the future. It also means my transplant has checked the second success criterion (Criterion 1: Still alive. Check. Criterion 2: Deeper remission. Check. Criterion 3: Long remission. tbc.) There's every possibility that the score will continue to fall over the next 12 months. I may yet achieve Complete Response (CR) with no detectable disease (not the same, unfortunately, as no disease).

Hip hip hooray.

This somewhat makes up for the farce of the last 24 hours. Marisa and the boys were due home last night. Today was to be our family hang-out day, before school again tomorrow. The 5 of us getting reacquainted and enjoying each other's company. Not a lot to ask, after 6 weeks apart. Instead of which, Marisa spent the preceding night, and most of yesterday being violently ill. So she and Lyndon (who isn't 100% either), have had to go for R&R at my parents' house, with Granny (far away from me and my still-recovering immune system). Just the older boys and I are here, with the support of Grandad. It is lovely to spend time with my children again. Being apart from your kids for weeks on end sucks. But it feels like our family reunion will never come. In reality, I sincerely hope it will come tomorrow.

Here, for your delectation, is today's letter...

3 comments:

  1. dear alex,

    i am so thrilled - what marvelous progress you have made! i am very sorry for the disappoinment of not getting a full family reunion, and hope that marisa and lyndon will soon be with you again. for now, i know there must be great joy in being with the other two children. keeping all digits crossed for all of you to soon be celebrating together. and i will be "believing" that you WILL achieve the big CR. believing - it's been hugh's and my mantra for 4 years; nothing religious, just a way for us to invest in the truth that all things are possible. i will hold that in my heart for you, alex.

    your fearless friend,

    karen, TC

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  2. Hi Alex!

    Louise here from the IoE. I just wanted to send you and your family warm wishes. I'm glad to see that the test results were positive for you and am wishing a very speedy family reunion for you all. Take care, Lou

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  3. Bonjour Alex , super nouvelles just back from Argentina would it be possible to call you but for sure nothing to do with business.... JOsé

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