So I’m starting this post on Monday 16th September – but not posting it quite yet as I’m hoping that it’ll have a happy ending!
It was my weekly daratumumab injection today – week 8 of the 10 weekly ones and then I’m meant to be going to 3 weekly for that and weekly for velcade and dexamethasone. I’m a bit fed up of it being weekly but was quite chilled on the basis I’m due to see my consultant on Thursday and was hoping to be told we could book a holiday abroad and that my Dex dose might be able to be brought down so I am less vile to everyone (myself included!)
Slightly frustratingly, although not totally out of the blue, there’s been a slight hiccup. They have changed where my bloods are measured and they will now be measured at Heartlands in Birmingham, and not the QE like they have been till now. That would be fine apart from there are often discrepancies between sites which, when you’re trying to assess whether a drug is doing its job, and how well it is doing its job, make it tricky.
I had been told they’d try to measure at both hospitals the first time, given their knowledge of the possible blips, but unfortunately it didn’t happen and I was faced with the news today that my paraprotein had gone up from 12.2 to 16. Quite a big jump for me! And whilst I knew that it may not be a ‘real’ increase, it still made Nick and I quite nervous. Luckily my consultant is superb and is already on it, trying to get repeat bloods done, ASAP, at both hospitals so we can see where I genuinely am. He has had other results do the same thing so is very optimistic that it’s all (or mainly) about the change in testing site.
So, in the meantime, and as hard as it is when it’s playing with my mind, we’ve decided not to share the news with anyone so we don’t worry family and friends. Hopefully within a week (and when you actually read this!) we’ll know what the actual situation is.
It’s amazing how hard it is to not worry ourselves though. Nick is better than me but I’m already worrying we won’t be able to go away or more importantly that he might not let me lower my dose of Dex until we know what we’re playing with. More so, I’ve been worrying that this last two months of treatment has been pointless and that I might have to start a new and more intensive drug regime…what will that mean? Does that mean my relapse this time is more aggressive? Will I be much more ill on a different treatment? Is it just that I don’t respond that well to dara? So many questions coursing through me! And probably all pointless if it is just a blip. But I can’t stop….and not helped as I lie here at 2am on a Dex night 😱. But I’ll stop here and add to my update on Thursday once I’ve see the consultant and know more.
Monday 30th September: So it seems to be good news which is great! After two weeks of waiting, we’ve finally got the results in from Heartlands which suggest that whilst the numbers are higher, they are still going down. We’re still waiting for the QE results which will show us a bit better how well I’m doing, but the main thing is that my numbers AREN’T going up, and that the drugs are seemingly doing the right job still. Again….worrying for nothing!
My consultant was very confident last Thursday when I saw him, that the changes would be due to the change of equipment at the new centre. I just couldn’t bring myself to believe it, and was super worried that the drugs had stopped working and that the past month of horribleness had been for nothing. I couldn’t believe his confidence or Nick’s. I think the idea that it might not have worked was just a bit too much to get my head around. That and my feeling that if I can just get through treatment successfully for the next 12 months, I’ll be in a great place to benefit from the next generation of myeloma drugs which are likely to come through over the next two years. I was so scared about needing alternative treatment already.
I was certainly on edge for those weeks, not helped by the decision not to tell most people what was going on. Living with it almost on your own is quite hard, but it did feel like the right thing to do…born out by the fact that there wasn’t a reason to worry! However, what I’m discovering, is that the fallout the day or two after I’ve gone through one of these ‘waiting games’, is quite obvious. It’s like it takes all my energy to stay positive, and then, even when I get good news, I collapse a little for a day or so once the results are in. Mad really. At a time I should be celebrating, it’s like a train hits me and I get all tetchy!
Anyway, I’m hoping that this week should be a good one without that to worry about now 🙂 What is also good is that last week, they reduced my dex too and almost straightaway, I could tell a difference! Not only did I sleep for a great total of 6 hours on the first night (rather than the usual 2 hours), I also didn’t get close to killing the children, or Nick. I felt so much more in control of myself again and so much more able to deal with the daily things that life throws at all of us. Here’s hoping this week is the same!
Still waiting to book a holiday but hoping to look at it this week – fingers crossed the Thomas Cook collapse doesn’t make it all too expensive, but we’ve got ideas for what we can do if that is the case.