DVD – Day 15 of treatment – All starting Well!!

Well normally the first thing I do when I get into hospital is to write this blog and give an update. Today, I’ve been really tired so have only just got round to doing it….but the good news is that because of that, I’ve had a blood result in the meantime….my paraprotein levels have dropped from 21 to 16.6 (as of the 5th August). I can’t begin to tell you how relieved that makes me feel that the drugs are actually doing something!!

So, basically, the paraprotein is an indicator of what the myeloma is doing in my blood…the higher it is, the more likely it is that my myeloma is active and more prolific in my blood. So this result is a great start, especially since my bloods were taken just a week after the first dose of daratumumab…and before I’d had the second dose. God, if it keeps going down at this rate (don’t worry, I know that might not happen!), I could be down to zero by the end of September! Slightly scary, as I don’t know whether that might also mean an earlier transplant where I’d been hoping for spring next year! But I won’t complain if it means we’re kicking this bloody myeloma into touch.

Funnily, the kids asked about the transplant when I was out for a walk with them the other day. I don’t know what made me mention that it could be over the Christmas period. Maybe it was just meant to be. They were a bit sad, but we talked about how we’d make it work no matter what happened and I think they were good about it all.

They have been amazing so far. They’re giving me space when I need it but trying (as hard as 12 and 14 year olds can!) to support Nick and I. What’s been great is that the treatment hasn’t hit me as badly as I first thought it might. Even the dex rage didn’t seem to come last week which I am so relieved about. I’d even talked to my consultant via email about reducing it if it had carried on but now I won’t need to. Although interestingly, he pointed out that there is limited research on the impact of Dexamethasone, despite the awful side effects. They’re so busy researching the main drugs, they just hope that the dex supports them!

So, I’m sitting here having my drugs infused into me and feeling quite chuffed with myself if I’m honest. I’d said to Nick only this weekend, my concern about just suffering a bit of tiredness, was that perhaps the drugs weren’t doing much. I know it’s early and perhaps we need to know next weeks results, but this is a great step and I’ll take good news where I can get it.

I’m even very lightly throwing around the idea of trying netball tomorrow depending on how tired I am….I’m really missing it and my back doesn’t seem to be giving me any pain at the moment. It’ll only be practice and maybe I’ll only do 20 mins…but how cool would that be!!!

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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6 Responses to DVD – Day 15 of treatment – All starting Well!!

  1. Francis Kelley says:

    Great news. From what you’ve said it seems that you have already decided to go for a second transplant. Is that what the QE,( Guy P) are strongly in favour of?

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    • Deb Gascoyne says:

      Yes I believe so although we have our first catch up on the 22nd. It’s going to be about the balance between the benefits of the SCT and keeping me on Daratumumab at the same time.

      But I think they believe that because I got so long first time round, it’s a treatment that works very well for me.

      Sent from my iPhone

      >

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  2. Tim Robbins says:

    Hey, Deb!
    Glad to hear you’re on track with your test results and that as a bonus the side effects are more manageable.
    Looking forward to hearing from you again soon.
    Best wishes to you and your family.
    Cheers Tim

    Sent from my Xperia™ by Sony smartphone

    Like

  3. Angela Smithies-was Thompson says:

    t is so nice to read such a positive post and glad that everything doing in the right direction and you are feeling so good. My husband is on your trial and just 2 years behind you ( 5 1/2 years remission now and still on Revlamid) so maybe when he relapses he will be going in the same direction as you. Hope the paraproteins soon back to zero. Love to you and your family and I hope you get to netball.
    Angela xx

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    • Deb Gascoyne says:

      Great news that he’s doing so well on MyelomaXI.

      I know, sometimes it’s all too easy to just post when I’m feeling down in life. But everyone NEEDS to hear the positives too so that they can hold their heads that little bit higher 🙂

      Good luck to you guys – it’s an ongoing journey but hopefully you’re all in a good place at the moment.
      X

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