Dexamethasone – The Devil Drug

My last post started to discuss the fact that life is pretty rough at the moment for me. It’ s been very different to when I went through treatment 9 years ago when other than periods of exhaustion, I didn’t seem to have any side effects from the early drugs. This time the devil drug, Dexamethasone (DEX) seems to have really hit me hard.

So what is dex? Well I’m no expert, but basically, it is a steroid that is meant to help to prevent the release of substances that might cause inflammation in the body. It also suppresses the immune system and can help with chemo-induced fatigue. The idea for me, is that it really supports the work of velcade, the chemo drug, and is thought to speed up the impact that it has, i.e bring my myeloma into check quicker, and my paraproteins down.

So that’s the good stuff that it helps with in cancer treatment. Unfortunately it also has a huge number of negatives attached with it, both physically and emotionally, that can cause a huge impact in patients….as I’m finding to my detriment. It can cause the following, just to name a few:

  • Mania – this can be a good sign in that you can end up with increased energy and due to not being able to sleep, can get lots done. The downside is that you often lose sight of reality when you’re going through this period, meaning you might make inappropriate decisions, say the wrong things, or even suffer delusions or take actions that you wouldn’t normally (apparently shop lifting is common – not me thank god!)
  • Depression – it speaks for itself, but even the days when you’re not on dex can be an issue as you’ve no longer got that mania, have spent hours (if not days) awake and then get the come down. Not pleasant for the patient or those surrounding them!
  • Impulses – lots of people talk about going on spending sprees when they’re on dex! I’ve managed to keep it in check thank god, but there have definitely been times where I’ve thought perhaps I can’t wait for that Breville toasted sandwich maker (after all who doesn’t need removable plates for the dishwasher – Cath I blame you!), or that after 20 years of making decisions with Nick about artwork, I can choose something without him!
  • Weight Gain – I swore this wasn’t going to affect me this time. WRONG!!!! OMG. Somehow I need to get back on track with it as it makes me miserable that I’ve put on soooo much weight in such a short time. Partially, it’s just increased water retention, but partly it is that no matter how much I say that bag of crisps is a bad idea, I still eat it…and then eat another pack! And top it off with a few other bits from the cupboard.
  • And then the general side effects that folk can get: Aggression, agitation, anxiety, blurred vision (yes),
    dizziness (yes), fast, slow, pounding, or irregular heartbeat or pulse, headache, nervousness, numbness or tingling in the arms or legs (yes), pounding in the ears, shortness of breath (yes), swelling of the fingers, hands, feet, or lower legs (yes), trouble thinking, speaking, or walking (yes) , troubled breathing at rest

And that’s just the dexamethasone and excluding the chemo and immunotherapy drugs 😂.

I’m on a couple of Facebook pages where patients and carers can discuss and share information and Dex really is known as the most awful drug around. Even the consultants know it is the devil drug. Everyone who has seen it in action, knows how it can almost destroy some relationships. It is rare patients aren’t impacted (like me first time round). It is rare that families don’t see a different person in their loved ones. It’s rare that spare rooms don’t come into their own!!! It really is awful – no exaggeration if you’re thinking I’m over egging this!

Those of you that have been following my blog will know that I found my first week horrendously hard. It seemed to ease a bit after that and whilst I definitely had my ‘Jekyll and Hyde’ moments, they were pretty short and not too horrendous. But I’m definitely feeling that it is building now. I’m not sure whether it is that I have a ridiculous amount of stuff going on in my life at the moment (….I don’t really have time to have flipping cancer, let along a bad temper!). Or whether the drugs are solely to blame. Or whether I’m just turning into a miserable old cow in mid-life. But it’s not a particularly pleasant time and I seem to spend about 2/3 of my life not in a massively smiley place. I hear myself talk to friends and for once, can’t really put the positive spin on things while I’m on this drug. And I don’t like that much.

Living with being miserable is really horrid. I feel like a terrible wife and mother, despite Nick and the kids being amazing about it all – they couldn’t have been more supportive of me. I never take Nick for granted with this – he really is outstanding and no-one around us will ever know how amazing he is in holding the whole family together. But the way that the kids are coping really shows what amazing young people they are growing into. They support me, they love me, they cuddle me, and most importantly, they forgive me when I am just the most awful mother to them. And in return, all I can do is apologise and keep trying to keep myself in control.

I write all this though, with other thoughts in my mind. This is not an excuse for me. I don’t want to allow myself to behave badly because i have the drugs as an get out clause. I will fight really hard to be reasonable and thoughtful to the people around me. But in the same vein, if people who don’t know what is truly going on, start saying the only reason I get cross, or grumpy is because of the drugs and that my opinions aren’t valid, or true, or allowed, that will drive me round the bend. The drugs don’t impact me 100% of the time, and especially with longer term values and morale issues, my views are still valid!

I hadn’t realised that when I go to daratumumab three weekly, I still had to keep having the velcade and the dex every week! Gutted doesn’t begin to explain how that made me feel when I’d been counting down the days to a more normal existence. So, I’ve decided that I am going to speak to my consultant when I go in next week. I’m going to see if we can reduce the dexamethasone slightly if my numbers are still looking positive. Just a bit. Just to ease the impact and hopefully allow us a slightly more pleasant run into the time of my transplant. My paraproteins are currently down at 12 so I’m hoping they might have dropped under 10 by next week and he’ll be happy about doing that.

OK, so I’ve finally finished this post because it’s a Dex day…..I started it 5 days ago! So the two manic days or in process now…might sleep a couple of hours tonight, might not. But at least I’ve finished this and can move on to a bit of my work….massively behind at the moment while I’ve tried to fit in other stuff like house, family and friends. But Monday’s at least are my catch up night…there’s a positive to end on!

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Crappity crap crap!

Well that’s probably enough to put most people off reading any further but I’m really struggling today and have been for a couple of days. I can’t really say why but the last 36 hours has seen me move from a place where I seemed to be happy and fairly good, to a place where I am just so sad, so angry and so upset with life.

I can’t really say why it’s happened or what has happened, but after a fab night away camping with some of the school mums, where I got the best nights sleep in weeks, and surprisingly didn’t mind not drinking, I got home the following day, on Sam’s birthday and life seemed to start going to pot. By the evening, I was struggling to take anything the right way, and just felt like life was totally rubbish.

Today, I was out for a girlie day with my lovely 14 year old. Well that was the plan. But it started with me waking up still in a mood that I couldn’t explain. Sad, frustrated and ready to be cross with anyone. Then the water seemed to turn off upstairs. For no reason. Just as we were due to leave.

We managed to have a reasonable day, and thank god we’d invited my MIL. She helped me to manage my frustrations, and somehow was very lovely about the fact that I was so moody and grumpy.

But we got home, and it all went wrong again. And that totally tipped me over the edge. As friends will know, we started doing our bedroom in July before my treatment started and the idea was that it would be finished within a week of treatment, i.e by the middle of August at the very latest. It was always a risk but we felt we could handle it. Things didn’t go quite according to plan and finally this week, I felt like we were nearly there. If only the builder felt the same way! I’m so cross with myself as I allowed him, on the basis that I thought he was looking out for my best interests (fool that I am!) to talk me into paying him before the job was complete. Now, things aren’t quite right, and he seems to be talking to me like I’m asking him to do unfair things…..even though it is just him finishing the job. Never again will I trust anyone.

But it was the last thing I needed tonight when he talked to me on text like I was the unreasonable one. I’ve spent the whole night sobbing on Nick. I’m so upset as I thought they were our friends but things have been left unfinished and whilst they’re coming back next week, they’re talking like they’re still doing us a favour. But it was all quoted for as part of the job. I’d never normally have paid in advance, but he played the guilt card and I didn’t want them to think I didn’t trust them….that word was even thrown at me. And now I wish I hadn’t. We don’t have the money to spare to pay it again, or to be diddled. And I don’t have the energy to deal with it all to be honest. I’m just exhausted and feel totally let down.

So poor Nick has had to deal with me, not only in a chemo induced meltdown, but also feeling very let down and very guilty that I have put us financially in a position. We thought that we’d be back in our bedroom by Monday, but who knows now.

And not only has Nick had to deal with it all, but the kids are really sad and trying to look after me as I’m not sure they’ve ever seen me so sad and upset. I really value friendships and relationships with people so when that breaks down, I feel so sad. But it also makes me angry that someone can do that to me. That they can leave us in this position. I wanted to scream (in the middle of sobbing!). I wanted to tell everyone including the builder how cross I was.

Luckily, Nick, as usual has been my rock. I don’t know quite how he has pulled me through to where I am now, but he has and he has stopped me from saying things I’ll totally regret. He has also pulled the four of us together and helped the kids to understand where I am. They have helped to stop me crying, even if I can’t quite smile yet. We’ll just have to see where we go with the builder. There are a few directions I suppose. But the family has to be more important.

I just hate it all at the moment. I hate the drugs. I hate the moods. I hate the feeling of not knowing what I’ll feel or when I’ll feel it. I hate the fact it feels so much worse that 10 years ago. Luckily I love my family and my close friends who help me to know that life is bigger than bloody myeloma ….. and house renovations.

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Life outside of Treatment

I’ve been a bit quiet on here the last week, largely for two reasons. We’ve been dealing with my dad after his fall last month, and also, there’s been little change or reason to write much about my treatment.

The last week has been a bit of an eye opener into the gap in care for the elderly. For those that don’t know, my dad has alzheimers (still not really sure at what level) as well as having had his fall and therefore, after a lot of thought and consideration, it was decided that he needed full time care of some sort. This is all despite the fact he’s done so well since he fell, breaking his thigh. His care in Oxford has been pretty amazing in the main. They (with our support I’d like to think!), have managed to get him to a place I didn’t think we’d reach when I saw him a month ago. I honestly thought I’d lost my dad.

But now, he is walking (albeit with sticks and a frame), can occasionally have coherent conversations, and is smiling with the twinkle in his eye that I remember as ‘my dad’.

However, it seems that there is a big gap for those people who are physically recovering, but perhaps require a bit more support to ensure that they aren’t a danger to themselves when they leave the hospital. We’ve had to start thinking about his move out of the hospital this week and were quite staggered to see that they might send him out with only one physio session a week, when he was on 7 sessions. For a man that was improving daily, it felt odd not to at least stagger the physio to try to reduce the chances of him having a serious fall once he was out.

Anyway, we’ve realised that sadly we can’t change that outcome, and luckily, as a family, we’re able to ensure that he can continue to have physio even if we have to arrange it. I just feel for those that can’t, or worse still, don’t realise that they should be. There’s definitely a big gap where those that are mentally sound, seem to slip slightly through the gap. It’s been an exhausting week, trying to work out where dad is best to go now, and how to deal with this gap in care, but hopefully we are nearly there and we can settle dad down.

I have to say that whilst it’s all been going on, I probably haven’t really been looking after myself very well, and as a consequence, I haven’t had a brilliant week with headaches and exhaustion. Treatment has all gone fine in general and my consultant is really pleased with my progress to date. We saw him on Thursday and he basically was all smiles. He did try and ready me for the fact that I may see a plateau at some point and I wonder if this was because my numbers went down less the last time than the first time. But I won’t think too much about that!

Paraprotein Results:

  • At start – 21.6
  • After 1 week: 16.6
  • After 2 weeks: 14.2

I’ve now had 4 sets of treatment, so there’s a chance that my numbers are even lower without us knowing, so that’s good. It looks like I’ve got another 6 weeks of having my infusions weekly, and then I will be able to drop them to every 3 weeks. That’ll be lovely as at the moment I only have one or two days a week where I’m not exhausted or feeling weird and wonderful…hopefully once it goes to tri-weekly, I’ll get the odd week of being able to enjoy life a bit more. At the moment I can’t even enjoy a glass of wine (which for those of you who know me, will know is a BIG deal!)

At the moment I’m not ill as such so I really shouldn’t complain. I have been having headaches for the past few days, but I think that’s been due to my dad too, so I’m hoping that these will reduce this week. I’m definitely getting the start of my neuropathy back too. This often comes from the velcade that I have as an injection and I’m getting the spongy feeling face, hands and toes – it’s hard to explain in words but so long as it doesn’t turn into the more painful form of neuropathy, I really won’t be moaning. And I’m exhausted.

The main reason is the Dex which I’ve talked about before. My consultant is happy to change it but actually, after the first week, I’ve managed it much much better. I don’t sleep on the first two nights, and the third night isn’t great, but all in all, I’ve now got my moods in check for a lot of it. The kids know I might be a bit more snappy or sad than usual, but in general, I’m trying very hard. I don’t want to change the dose unless it becomes manageable, just in case it impacts on how much the other drugs work!!

But the great news is my consultant is onside, at the moment, for us to consider going on holiday in the October half-term. It looks like it might even fall in-between one of my 3 week appointments which would be amazing. He won’t commit until our next monthly appointment at the end of September, but if things are good then, and I’m still handling the treatment well, we might be able to start looking for somewhere hot for October which would be amazing!

I’d also like to just say thank you at this point for all the lovely support and care we’ve had from family and friends over this first month. It’s hard to explain how starting on chemotherapy, and not knowing whether it will work or not, impacts you emotionally. It’s been a really hard time for Nick, me and the kids no matter how much of a grin I try to put on my face! But we’ve had so many lovely messages of support, cards, flowers and gifts, all of which help us to keep smiling along this long journey ahead of us. So thank you….you all know who you are! x

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