Daratumumab: results, side effects and the impact of Covid

I’ve been thinking quite a lot about my treatment in the last few days for a few different reasons so I thought I’d get it all down in a blog post.

I was back at hospital last Monday for my latest dara infusion. Slightly less worrying than the previous visits as the hospital seemed totally on top of everything covid related….and I suppose after my visits to two other hospitals for my broken foot, I’ve had to relax a little about it all (please see previous post if this means nothing….for some reason, I don’t think it posted properly). Anyway, I got my results on bank holiday Friday, and they were at 7.2. So up a tiny bit but pretty much stable for now. A lovely start to the weekend and another excuse for a glass of wine (hmmm, who actually needs an excuse in lockdown??)

Stability has to be a good thing while the world is such a precarious place, but with cancer treatment opening up now that the initial crisis has calmed a little, it is probably sensible that I keep on top of what my options are and the questions I should be asking of my consultant next time I am in touch with him. It seems unlikely now that my numbers are going to go down dramatically now so I need to find out:

  1. Are my numbers low enough that they would consider harvesting my stem cells without further treatment, and if so, would they be prepared to do that now? As far as I remember, and because the QE don’t give me chemo for this process (unlike when I had the process at the Marsden), the process wouldn’t lower my immune system and so doing it while covid is around, might not be an issue. It is a day treatment too.
  2. If my numbers aren’t low enough, what will be the next treatment that I am put onto and would that change depending on how covid-19 is impacting on life? I don’t think they would now put me on the DT-Pace that I was so worried about originally because it impacts the immune system too much and there are other options that are being allowed due to coronovirus. So, if they think I need to have additional treatment, I think I would rather have it now while Nick is at home and the kids are off school, than have it later down the line when they might decide DT-Pace is the answer after all! I’m also potentially having more side effects from the dara than before which I’ll mention later.
  3. Are Stem Cell Transplants on the agenda to come back? For a while, transplants have been seen as less favourable as ongoing treatment regimes due to the fact they are hugely intensive, make patients very ill for around 2 months, and can’t be guaranteed to work for everyone. Last time I had mine though I was lucky enough to get 8 years remission (for many, two is considered good!), and effectively be treatment free – whilst I had maintenance therapy, after the first year, it didn’t impact my life at all! So I’m interested to be clear that they will be used again. I’ll be absolutely gutted if this takes them off the table as I don’t want to be on chemo indefinitely.

The other main reason I’ve been thinking about my treatment is because I’ve had a lot of wrist pain for the last 6-8 weeks. At first I just thought that I’d been doing too much and that it would ease off. Unfortunately, that hasn’t happened and not only has it got worse, but my other wrist has also started to show symptoms too. It could be something like tendonitis or carpel tunnel syndrome, but when I looked up the side effects of dara, joint pain is one of them. And when I asked the myeloma forum that I’m on, a number of people who are at the same stage as me for the treatment, are having a similar issue. It’s pretty painful when it does hurt, so if I am going to be asked to change treatment, I’m wondering if now wouldn’t be a good time with the hope that this side effect might diminish. Along with my eye cysts. Bowel Issues. Bone weakness. And all the other things that can really get you down on a bad day!!!

As I said to Nick this morning, I try really hard to be positive most of the time and see things as being good at the moment where my treatment is concerned. But it can be really hard when I look in the mirror and see a fat, broken lady with cysts on my eyes and a feeling that there is little I can do about any of it. I think my eyes really depress me as they were the only thing I actually used to like about my appearance anyway. Anyway, I’m not too miserable at the moment but really need to sort out these side effects!

I can’t see them making any final decisions on anything until they have my next lot of results, but we’ve asked for the opportunity to talk through the questions above and see where we stand. In the meantime, I’ll keep busy doing work on the house and homeschooling (if that’s what you can call it!) the kids.

Thankfully Nick working at home means he can help with the numerous things I now have to bow out of with a broken foot and painful hands – he’s a gem as always. We actually celebrated our 18th Wedding Anniversary the other day which was lovely. We cooked together, sent the kids to the other room and had some quality time just the two of us which was fab. Oooh….and there might have been a bit of champagne and fine wine involved too – thought I’d share a couple of pics!

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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1 Response to Daratumumab: results, side effects and the impact of Covid

  1. alexbicknell says:

    You’re asking all the right questions. The wrists thing sounds horrid – I never had any of that with dara. The list of potential side effects with all our drugs is potentially endless, isn’t it? Stick with it though – it’s ridiculous how quickly I’ve half forgotten all the misery, now I’m feeling a lot better. You’ll get there too.

    Liked by 1 person

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