Quick update

I’ve realised I never updated on what happened at our last appointment.

So my numbers went down ever so slightly…good news although unfortunately it doesn’t really change anything.

My consultant has said that he still expects me to start treatment, and probably within 2-3 months. The only thing that has changed is that NICE have now approved a drug called Daratumumab via the Cancer Drugs Fund. And that seems to make my consultant very happy!! He believes it will be much better than the Myeloma XII for me so that’s good news. I’ll still be having a transplant at the end, and would continue on Daratumumab afterwards too (assuming it continued to have the right impact)

I’ve had a couple of weeks not having to think about blood tests or results though which has been lovely. I’m back this week for the next tests though and am already getting twitchy! Stupid! But it has been nice given the knowledge it’s going to be a large part of my life moving forwards!

In the meantime, and until we start, we’re trying to do some bits to the house to make it more hospitable. All a bit of a race against the clock but hopefully we can get the main couple of bits done and that’ll help.

We still haven’t said anything to the kids about it being definite and will wait until we know. The longer they can be relaxed the better. Rebecca has just been accepted on an international experience with her Guiding unit and has just taken up her DofE so has so much on, along with GCSE’s that I don’t want her worried. And Sam is emotional like me so better to keep it back as long as possible!!

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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5 Responses to Quick update

  1. Tim Robbins says:

    Hi Deb

    I guess that you must have mixed feelings about this, but at least you’ll have a plan and it seems to be good news that the Daratumumab treatment that your consultant favours.
    I know that you have great support from Nick and the family, but if there’s ever an occasion where an extra pair of hands are needed to do anything, you only have to ask…

    Catch up soon!


  2. alexbicknell says:

    I’ve had 2 doses of dara, so far. A long and boring day, but I avoided any dramatic side effects, and so far it seems the least arduous regime I’ve ever been on! Waiting to see if it’s working for me. Fingers crossed.

    Good luck!


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