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!!!