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!

Broken Again

Last time I wrote I was 7 days into an isolation period. One that we’d chosen to take to try to keep Nick and the children safe from the risk of corona virus, after I’d been to hospital for treatment. I was feeling pretty low at the time, but thankfully managed to pull myself out of that and get myself together for when I came out of isolation on day 12 – last Saturday. How nice was that….lots of hugs and family time!

A consequence of the steroids I take, being in isolation, and being under ‘lockdown’….and a total lack of willpower when it comes to being stuck inside with cupboards containing anything edible, have meant that I have put on a HUGE amount of weight since July when I started my chemo. So last week, I had decided to start running with my son…to help him with his #15B415 challenge of running 15km in 2 days, and also to help with a challenge I’ve set up to get friends and family to walk/run 50,000km by the end of the year.

And it was great. He was so motivating when we ran and was really trying to help me improve as he knew how important it was to me. But unfortunately, on Monday while I was running, there was a sudden crack and my foot went. Those of you who have known me for a while, know this isn’t a sound that is unknown to me as I think I’ve broken my foot five times now in the past seven years! This was the second time I’ve broken my fifth metatarsal though and it seems to hurt far more than every other time.

It’s been a strange decision as to what to do though. With Covid-19 on the scene, and the fact we’ve been isolating so carefully for the past 7 weeks now, it wasn’t an automatic decision to go to hospital. In fact, if I’d had to go to A&E I wouldn’t have risked it. In the end Nick took me to the minor injuries fully masked and gloved, and with hand gel.

We also made the decision that we would NOT isolate this time round. It would have involved 3 weeks and, with Nick having to take me to hospital three times in one week, felt like it wouldn’t have made sense. I’ve also been finding things emotionally hard in the past few days (not helped by watching series 2 of After Life – brilliantly funny but also terribly sad and too close to home for me on many levels). The idea of spending 3 weeks pretty much on my own, filled me with dread, so I was really pleased when Nick (and the kids) agreed that they didn’t want me to go into isolation again. So keep your fingers crossed that I don’t pick anything up!

So for the time being, I am sat here with my foot up and making the most of children being around to make cups of tea (inbetween home schooling of course!). However, I’d like to stress I’m also trying to keep doing things as much as I can – even made a fruit crumble cake today! Hopefully six weeks will fly by and my foot will heal quickly!!

Broken again

Day 8 but losing the will

I’ve now been in isolation from the family for nearly 8 days. Until tonight it hasn’t felt too bad, but then I started to see posts on a myeloma forum talking about the lockdown for myeloma patients.

The first that got me disillusioned (and slightly angry if I’m honest), was a post that suggested that as people in the highly vulnerable category were as bad as those going into parks during lockdown, if they went for a walk. For starters, I have never had my letter detailing what I should and shouldn’t do, but even if I had, going for a 30 minute walk, in a rural area where I don’t come within 2 metres of someone, is not the same as walking down a main road or stairway where I might have to get close to someone, or may have to touch something that is contaminated. The thought of people judging me, whilst I’m in the middle of giving up most of my life at the moment, just makes me so angry. I genuinely believe that whilst we should all be following the rules to protect the NHS, that I am sensible enough to only do what is safe.

The second post got me even more disillusioned and sad. Someone was asking whether they had been right in hearing that as the highly vulnerable category, we might have to stay in isolation until next year. Yes that’s right. 2021.

I. just. can’t. do. it.

I really strongly feel that the reason that I have gone through treatment and everything else over the years, was so that I could live a normal life for as long as possible. It is why I risked a transplant once, and why I am going to risk it a second time. Because it gives me drug free time that I can be myself as much as possible. What is the point of me putting myself through all of that, if at the end of it all, I have to stay in my house and am not allowed out. Don’t get me wrong, I love our home and I love our garden, but at no point did I ever think that would be my life.

Even more than that, with two youngish children, we can’t limit contact within the house indefinitely. So, what does that mean? That I have to send the kids to school, and Nick to work, and just not go within 2 metres of any of them for the next eight plus months? Being away from them all this last 8 days has been super hard and I’ve missed their affection and love. I can’t, for one minute, imagine not being able to be near them for months at a time once they go back to work and school. And they can’t stay at home for an unlimited period – it would send them insane and impact their growth, academically, socially and possibly physically. But I think my mental health will go to rock bottom if I can’t be with them.

Up until now, I’d been so good at not worrying until we knew the facts but for some reason, tonight it has really got to me. I am so worried that after everything that we have been through, this damned coronavirus is going to bloody ruin everything. I find it hard enough being limited by my myeloma, but the idea that in conjunction with covid-19, I might end up housebound, or worse still, dead, just doesn’t bear thought….hmmm, the irony given that I can’t stop thinking about it.

Hopefully tomorrow will be a new day, but I know that there is likely to be news in the next few days about an extended lockdown. And realistically, I know that us vulnerable ones, are likely to be in lockdown for an extra 4+ weeks. I can cope with that. I could probably even do a bit more than that if I had to, I’m just not sure about months more. And I probably sound like a petulant little pipsqueak (as my dad used to call me!) moaning, but unless you have walked in shoes like mine, you’ll never understand.

And talking of my dad, that’s another thing. When will I ever get to see him again? Will I ever get to see him again? The home he is in won’t even reply to my emails asking to try to facetime him, and whilst I know they will be run off their feet, I worry that he will be feeling lonely and wondering where we all are. And I miss him, dementia and all. I miss his lovely smiley face when you can see him suddenly work out that we’re someone he loves. And I miss my friends too 😦

So yes. Tonight I am feeling really sad and fed up. And really worried about what the future holds. More than any treatment I was facing into…at least that had an end point.

F*cking covid. I really hate it at the moment.

Myeloma and Covid-19 – this strange world

So a few weeks ago I wrote a post in a time that felt so surreal. Nothing has changed, if anything it all gets weirder. Covid-19 is changing the world by the day and I honestly don’t think much will go back to the old ‘normal’.

For us as a family, once the rest of the UK went into lockdown, things have stayed largely the same as they are for others. Until today.

I have to say, that whilst I found the first two weeks really, really hard, the last two have become easier. I think I was so scared about how myeloma and coronavirus would mix, whereas now I have learnt to let that go….most of the time. Perhaps it got easier when it wasn’t just us doing the isolation piece – is that really selfish?

We are lucky that we have a spacious house and garden that has meant that our 3.5 weeks of isolation hasn’t felt cooped up. The children have home schooled well and we’re trying to help them to mix it up with dog walks, cycle rides, card games, and other things…anything to keep their mental health stronger…and ours! The same goes for us. We’re trying to make the most of our time with the kids, with each other and in the house. Lots of gardening (it has never looked so good!), decorating (lockdown hit before we could get the decorator in!), walking and cycling. Two meals a day all together, family boxsets and more facetiming than ever before. Oh, and courtesy of Nick, Sam is now sporting this wonderful haircut….he’ll never be allowed it again….and to be fair, he only did it to try and add to his fundraising total for Myeloma UK (pls sponsor if you haven’t – even a pound would be great!)

This week things are changing again though. I am currently writing this whilst I’m sat in hospital waiting for my monthly dartumumab infusion.

Mask, gloves and glasses all in place to try and reduce the risk of picking anything up while I’m in. I can’t believe when you’ve isolated for nearly a month, how scary it has felt having to come somewhere public again. Especially when I knew that staff on the team have had the virus! I’m just pleased I’m here this week and not last week, when apparently, staff weren’t wearing masks or anything. I’d even brought in masks for them, (thanks to my sister kindly donating them!), but thank god they weren’t needed. I didn’t want to look fussy asking them to wear them, even though I knew it was a fair request. Despite my fear of being out and about, there is an element of relief at seeing people. Of a gladness for human interaction, face to face. Even the car journey to the hospital felt like a blessing of some kind. It’s another reason to hope that we will all find something to be grateful for at the end of this viral pandemic.

So the downside of my hospital visit…We’ve decided that I will self-isolate at at the end of this. I don’t think I could forgive myself if I took anything home and the kids got ill. Not when I have a choice unlike so many of the amazing people out there who are still working to keep the country running. So, I will be going straight to my room when I get back – do not touch anything, do not pass go. I had big hugs with Nick and the kids as I left for hospital, and they will be the last ones for 12 days. I’m not quite sure how hard this will be. I think I’ll get lonely but imagine there’ll be lots of facetime and zoom catch ups with friends and family. I’ve got a couple of jigsaws, lots of books lined up, and we’ve moved the TV to our bedroom! I actually think it might be harder for Nick who is now not only working fulltime, but having to manage the kids over the Easter holidays, cook, clean and keep on top of everything! I’m very lucky to have such a capable and lovely husband (and yes he reads this blog 😉 )

But this period of time is affecting so many people. I have family (and friends) who are about to have a baby, others who have businesses that are up in the air at such a tough time, and others who have been separated from their families. And others who choose to put themselves out there to try to resolve this strange and terrifying virus – nurses, teachers, civil service staff plus many more. The whole world is worried – we are no exception. This blog feels slightly self-indulgent as I get further through writing it. But perhaps one day I will look back and it will be a record that will help.

To everyone, please stay safe….and stay at home. With much love.

xxxx

And change……

So unsurprisingly the Coronavirus has meant a total change in our life. Where to begin?

Well yesterday I was back to see the consultant. After my numbers going down the week before last, last week they went back up to 9.2. I’m sure there must be a better word than rollercoaster! Basically it means the graph shows my numbers as roughly staying the same. Which is definitely better than them rising. Before this week, I think they would have been considering hitting me with DT-Pace but because this blasts your immune system and would put me at greater risk of contracting Coronavirus, we’ve been told that both this, and Stem Cell Transplants have, unsurprisingly, all been cancelled for the foreseeable future.

So of course our next question was, what does this mean for me. The consultant is now happy, given the current climate, to see if the daratumumab can keep them at the current level till things blow over. Great. If it does. But what if not? Whilst the previous two options are now off the table for the time being, apparently if my numbers rise, the next option would be a drug called pomalidomide. This is in tablet form and in the same family as revlimid which kept me in remission for a long time. I tolerated that well although it is likely that my neutrophils will decrease which means I will still have lower immunity- so isolation again will be key.

I have to say I’m quite relieved. With everything that has been happening, we thought it was unlikely they’d still do transplants but I was concerned that there would be no alternatives and that they’d have to leave my numbers to just increase, risking bone damage and/or kidney damage. So I’m really relieved that this isn’t the case even if it does mean the whole situation has changed again. Better a different course of treatment than no treatment, or a treatment that would put me at major risk.

Last week Nick and I also started to talk seriously about what the virus might mean for our lifestyle and whether we were happy to wait to be told what to do or whether we should think ahead. We decided that we were getting more and more concerned about the risk that we were facing especially with the kids being at school and clubs every day.

Nick’s company had already contacted him at the beginning of the week to say he had been put on the ‘at risk’ list due to my myeloma and the treatment I’m on. This meant that he didn’t have to go to the same meetings, hospital visits etc that might normally have been part of his role, nor travel to London for unimportant meetings. So if he stayed off work, but we kept the kids at school, it felt like we were doing things in a very half arsed way!

By the following day things had moved on and most of his company was being told to work from home where possible and so we talked again and decided that we were going to email the school to tell them we’d be withdrawing them.

The kids haven’t loved the decision if I’m honest because they can’t see their friends but they have understood why we’ve done it. I’m not sure they particularly love our commitment to home schooling them – lol. We’ve been so lucky as the school has been amazing in their support in terms of a) agreeing they would support the decision and b) agreeing to get teachers to send work home each lesson. We’re ever so proud of how the kids are doing though – they’ve been following lesson plans each day and doing their homework. It’s not easy when you don’t get to see your friends at all at that age (or at my age!). I’m sort of hoping that schools close soon for their sake – they won’t feel so separate then. At least now most clubs have finished so they aren’t worried about missing out there.

At the same time as withdrawing them, Nick and I made the decision to self-isolate. Me totally and Nick as far as he can do whilst supporting us. We’re now 4 days in and I can promise you it isn’t easy so I can understand why the government wanted to wait to ask people to do it!! It’s amazing how many things you forget that you ‘pop out’ to do. Birthday cards, loaf of bread etc.

It’s also amazing how many things come into your home that have been touched. Most of us have probably seen the change in behaviour of amazon and Royal Mail but have you thought about wiping down packages when they come in. And what about your online food shop that so sensibly keeps you in isolation? Should every packet be wiped down? Or kept separate for 12 hours to and sure any viruses have died? Have I just become paranoid? All mad when you start thinking about it, but think about it we all should. This is really serious.

So yesterday most British people heard Boris Johnson and his team tell us that people like me, with myeloma, should isolate ourselves for 12 weeks. We got there first! But it’s going to be hard. Very hard. Especially once other groups get added to this, which I’m convinced they will be.

I can’t totally isolate as I have to go to hospital once a month for my treatment. But it sounds like that’ll be ask quick and careful as possible and I’ll be set back home to get results via the phone and not face to face. That suits me now that they aren’t planning to change much or move forward with the SCT. To be honest I think I’ll need that trip to stay anywhere near sane!!

I’m sure there’s more but my brain has gone for now so I’ll stop boring folk!

Meibomian Gland Dysfunction, Chalazions and other fun things!

Back in January I wrote about the fact that I had been diagnosed with Meibomian Gland Dysfunction. Well, it turns out I have it pretty severely now, and we think that it is caused by the velcade that I am having, albeit it that it is pretty unusual to have it! I like to be unusual. (Not). Basically, it looks like my glands have not only blocked up and caused inflammation, but now they have become blocked and infected (blepharitis) which have lead to what is called chronic blepharitis and what is called a chalazion.

So when I just had the MGD without the infection, the best way I was told to treat it was by using a warm compress and massaging both eyelids. You can buy masks from the chemist that do a similar thing, and wipes that you then wipe the eyelid with. Anyway, that seemed to be working really well until a couple of weeks ago, when the first stye/ chalazion occurred. It basically made my left eye really sore, really swollen and very itchy. So I took a trip to the GP on the Friday who prescribed me with antibiotics….and I also started on ibuprofen on the recommendation of a friend. (Before anyone says anything, I don’t have any kidney damage so whilst I’m not meant to take it, it felt like a sensible thing to try in the short term)

Anyway, into the hospital on the Monday to be told it wasn’t anything to do with the velcade (hmmmm….I don’t think so!), that I should come off ibuprofen so I didn’t cause any kidney damage and take antihistamines instead, and prescribed extra eye drops. And things very slowly seemed to improve.

Until the same day two weeks later, when it came back in the right eye (and less so in the left eye again). This time, I immediately started back on the eye drops which I luckily had, emailed my consultant (who hadn’t been the one to give me the previous advice), and got it agreed to go back onto the ibuprofen to at least help bring the swelling down a bit. This time though, I’ve had it really sore over the whole weekend with it not only causing the chalazion, but also becoming infected.

So today, back to the hospital and it was agreed that I wouldn’t have my final dose of velcade as it quite probably was that which had caused the issue. In addition, further to an article I was given by my consultant, it was decided to put me back on antibiotics, but mainly to increase the dexamethasone that I’d had reduced last year due to it causing me anger issues! Dex is an anti-inflammatory and I have to say that I felt better within a couple of hours. It’s still infected of course, but the swelling is lower and I haven’t needed the ibuprofen.

Now we’ve got a bit of a waiting game. Hopefully, my eyes will just improve as I shouldn’t be having any further velcade. That is over thank god. In addition, I’m hoping to get a bit of energy back too… I’m now meant to be going to daratumabib maintenance until my stem transplant.

But, my numbers went up last week. Grrrr. Nothing is simple. I think they’ll still try at least one lot of maintenance to see if the dara works better without the velcade. But who knows what they’ll do if they keep rising….we could be back to the DT-Pace regime. I did my bloods again today, and I think they’ll be done next Monday too…all of which will give us a better indicator of whether I’m hovering around the same place, no longer responding to treatment, or whether my numbers do what we’re desperately hoping, and come down a little further to about 4 or 5.

Somehow (I may thank the antidepressants for this), I seem to be coping relatively well with it all. As does Nick I think. We aren’t telling the children too much until we know and luckily because we’re not falling to pieces, that is much easier. There is no point panicking unless it becomes necessary. So, I’d ask people just to take care in talking in front of them so that we can tell them what is necessary, when it is necessary, rather than them overhearing something….thank you.

I’ll update on here when we know more. Keep your fingers and toes crossed for those numbers to come down further please….I’ll even accept a few prayers if people are that way inclined!!

How communication makes all the difference

So we have met with the transplant consultant this week and things are a little bit clearer. Not much has changed but we understand it all a little better now which is helpful.

So one thing that he explained to us was that my paraprotein isn’t as low as they would want. I thought that because they are the same as when I had my first transplant, that they wouldn’t have an issue. But it seems that they look at the percentage decrease, and I’ve only reached about 60% where they’d want to see a decrease of about 80%. So, what does that actually mean. Well it seems that we’re going to keep watching for a couple of months. I come off my velcade (thank god!) after next Monday, and they think there is a chance that the Daratumabib has the possibility of kicking in again. If it does, and it takes my paraprotein lower, it might reach a level with which they are happy to proceed to transplant without any further treatment. Which would be great news.

If however, it doesn’t take my numbers any lower, or they start to increase, we may have to revert to the idea of DT-Pace. Yuck. However, at least now, whilst we know that it would be an awful treatment, that it would be the best option available and would give me a much better chance with the transplant. We’re still keeping our fingers crossed that the numbers keep going down though!

He also discussed my stored stem cells which have been at the Royal Marsden until recently. I was told that there weren’t enough, but it now seems that we might have. Apparently I’m very unusual because one test said there were enough and another said that there weren’t. Not what usually happens. So there are some questions to be asked to see which number is the most useful. And in the meantime, I’m going to try and lose some of the weight I’ve put on from a mixture of Dexamethasone (the steroid) and my total lack of willpower! Apparently, the result that says I don’t have enough stem cells, is linked to how many they need against body weight…..so whilst they haven’t said anything about losing weight, I’m thinking it can’t hurt*.

So in terms of dates, we don’t know much more. I think it’ll be April before we have much of a solid idea, and at that point, we’ll probably get told either a timescale for transplant, or that I’m going onto DT-Pace….or knowing my luck, something totally different!!

However, I’m hoping that in the meantime, that coming off the velcade might mean that the next couple of months are a little easier and that I start to feel a bit more human again. I have to say that the last few weeks have become harder and harder. I’ve been so tired that over half of my week has been wiped out. I haven’t even managed to walk Marley and have had to get the kids onto it. Rebecca even dealt with the builders last week, made them coffee and put a blanket over me while I slept for 3 hours. Poor kid. But I’m so proud of how they are coping whilst looking after me.

Anyway, the overall feeling is that by getting the information that we did on Monday, Nick and I both feel in a position that whatever decision they make moving forwards, we have 100% trust with what decisions they’re making, and why they’re making them. And that has to be good. The one thing I never want is to wish we’d done things differently.

* I’ve decided to give up processed sugar, crisps, nuts and takeaways for Lent – take a look at my #50B450 tab on this page.

A reprieve

So we’ve had some relatively positive news which is that my paraprotein has gone down ever so slightly which means my consultant is happy to keep me on the current treatment for the time being and not move me to DT Pace which I/ we were dreading!

It doesn’t mean he won’t change his mind, but it’s good news for now and we just have to just keep our fingers crossed that it doesn’t go up again quickly….and in fact that it goes down. The other impact is that my transplant will probably be a bit later than we’d expected….again it’ll all depend on what happens with the figures but it looks likely that it won’t be before the summer now rather than April/May.

That could be really good as it’s a nicer time to recuperate after my 3 weeks in hospital, will mean the kids can get to places in the light and also means we can keep getting work done on the house! We’re desperately trying to do as much as we can this year before the transplant so we can enjoy it after!! We just have to avoid when Rebecca does her Rangers community project in Romania as she doesn’t want to be worrying – sort of hoping we could go for a time just after she gets back in August!! But we’ll see!

Anyway, thought I’d just update the score as so many of you have been in touch and sent best wishes to us all – bear with us – it’s even more of a yo-yo for us than it is for you!!

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Thanks

Thought I’d just write a quick post to thank everyone for contacting Nick and me to send us love and support after my last post.

We really do appreciate it all massively. We’re busy trying to bury our heads until we know the full story this week…and hoping that my numbers will do another spin around!! Well I am anyway!

So we’ve spent the weekend doing house renovations, playing games with the kids and generally having a nice time with family and friends. And trying not to think about myeloma at all! My plan is to keep as busy as I can until I find out more at the latter end of this week! And if that means exhausting myself doing work on the house, brilliant – at least then I’ll sleep through the next few days 😂

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