The Stem Cell Harvest v2 – Day 2 (post plerixafor)

So after Wednesday’s disappointment, I went back that evening to receive plerixafor, a £5000 injection that helps move the stem cells from the bone marrow back to the blood for harvest (so so grateful that we have the NHS in this country – worth every penny of tax that Nick and I have ever paid!).

As I mentioned, I’d been warned about sickness and diarrhoea, but luckily only felt a little queasy and poorly. Unfortunately it also causes insomnia like the G-CSF injections and that seemed to be the one downside. Another night of no sleep (not helped by a fox deciding to get randy for an hour at 2am!) meant a tough start to the day.

That said, the day itself went fairly well. I’d been so nervous after the harvest I had back in 2011 when they’d had to go in my groin (and hit a nerve in the process!), that I have nothing but the utmost praise for the staff at the QE in Birmingham.

They put me straight onto the machine when I arrived at 8am and had managed to find veins with limited issues. We did start to have the same problems as in 2011 but they were great at slowing down the machine so that it wasn’t an issue.

As you can see from the photos, basically what happens is that they put a canular into one arm, and a large needle into the other and turn the machine on!!! The process isn’t at all painful which is good but it did cause what feels like a vibration through your whole body, and tingling and numbness in my hands and feet. This was due to my calcium levels dropping (all part of the process) and they just keep giving you tablets to help. (Luckily, it wasn’t as bad as 2011 when I’d ended up on a calcium drip and shaking.) I think the only other issue was when the big needle came out of my arm – you’re meant to keep your arm in one position for the whole 8 hours and without even realising it, I moved it at one stage so there was a slight panic trying to reset everything in opposite arms! But thankfully, the amazing team got it all started and the machine back working.

Throughout this, they’d done the same CD34 test at the day before to try to make sure that the plerixafor had worked and whether they were likely to get the stem cells. Around 1pm, they got the results which said that I’d only doubled my count and not quadrupled like we needed, so there was a bit of a concern about how many stem cells they’d actually get out.

Thankfully, the calculation the actual machine said was right and we managed nearly 1.5 million – I only needed 0.5 million to add to those that had been harvested back in 2011. So come 6pm last night, Nick finally got me home where I managed to get a much better nights sleep. That will be the last stem cell harvest I ever have to do as you’re only ever given 2 autologus transplants.

So now it’s another waiting game. I go in next week for lung and heart tests, and assuming that all is good there then I have to wait for the QE to start doing transplants again. We get the feeling that this won’t be before mid-August, but other than that don’t know when. The hope is that it will be before the winter when there is of course more risk from illnesses, a second wave of covid, etc.

I’d like to say thank you to everyone for all your lovely messages of love and support. I can’t begin to say how much it means at a time like this. It was 11 years ago today that I first got diagnosed with multiple myeloma, and never once have I felt alone with it. From Nick’s unwavering love and kindness through to all of our family and friends. I am so lucky to have you all around me. Thank you

The Stem Cell Harvest v2

8am: So five days ago I started prepping for my stem cell harvest which is taking place today. It involved 4 days of G-CSF injections which stimulate the production of stem cells so that there are enough of them for today’s harvest.

I think I’ve been quite lucky. The pain hasn’t been too bad, helped I think by the fact I’m already on pregablin, a treatment which blocks pain by interfering with nerve signals. It also helps deal with anxiety so I’d imagine it’s been great in reducing issues. It’s not been totally problem free, and I have had throbbing pain in my back and the base of my skull at times….I can only liken it a bit to labour pains? But since I’ve put that to the back of my mind, I couldn’t even swear on that. Last night was the worst but perhaps there was a level of anxiety in there about today that made it worse? I ended up getting up at 5am and watching The Blacklist as I couldn’t get back to sleep.

It’s all been much better than what I remember last time, so fingers crossed this will continue throughout today. I’m now sat in the Apheresis ward where they have just taken my blood. They will do what is called a CD34 blood test which will check the predicted level of stem cells. I’ll have to wait for a couple of hours for the results of that, but they’re assuming that I’ll be ok given I only need half a million cells (To put that into some sort of perspective, first time round at the Marsden, I got 4 million cells. You generally need 2.5 million per transplant). We’re expecting it all to be fine to go ahead today given how few I need so hopefully that will be the case!

10.15am: Gutted. Just found out that my count is only 8 and that it really needs to be 25+ to be worth them putting me on the machine. So that means that I now have to go home and then come back this evening when they’ll give me a drug called Plerixofor. From what I understand this is a pretty expensive drug, but it is meant to quadruple the count so I should be ok to come back tomorrow. It does cause sickness and diarrhoea so I’ve got that to look forward, alongside more bone pain I imagine.

It gives us an added complication as Rebecca is going off on her DofE expedition tomorrow too (isolating on return we think!). Poor Nick will have to drop me here at the hospital at 8am again, and then drive down to Hereford. Bloody covid means that no-one can help us with this one either.

Oh well. Hopefully tomorrow they’ll get enough stem cells in one go and I won’t have to come back on Friday too.

A little bit of happiness

I thought I really ought to write to update after my last, fairly down, post.

Life is a little bit cheerier now. Not perfect, but then again, whose is? But I’ve increased my antidepressants and that has helped me to be able to pull myself out of that dark spot that was there. I’m so touched by the people who got in touch and who helped me during this spell too. Good friends are said to be hard to come by but I seem to be blessed to have lots surrounding us. And it goes without saying, that Nick was there supporting me fully throughout.

I’m definitely in a better place now, although I’m quite nervous about the easing of lockdown. It’s interesting to see on the news and on Facebook how many people are just quickly moving towards the old ‘normality’. We on the otherhand, are pretty nervous about the whole situation. At the end of the day Covid-19 is still there and just because the government tell us that we don’t have to shield anymore, doesn’t mean that we feel it is safe to stop everything that we’ve been doing for the past 4 months. After all, if we stop and one of us gets ill after all this time, how will we feel about it? Just for a bit of freedom.

I have to say, I have no wish to go clothes shopping, to go to the cinema or even to go to the pub. Not while we have to socially distance. If things are that worrying, there is no point in us risking those things. But I still miss catching up with friends and family, popping to the shops when we run short, playing netball and having the kids out and about. Oh, and the cleaner (as spoilt as that makes me sound!).

I would harp on about it, but I’d imagine the people reading this are linked to us or myeloma anyway and probably aren’t the people going to the beach or holding parties. But if you are, all I’d ask, is please be careful. Otherwise everything that we (and especially our teenage children) have given up, is almost pointless if we end up back where we were in March when lockdown started. Now isn’t the time to have drinks parties in the back garden just because no-one can see, or to stop thinking about the fact that even if you don’t get ill, you can pass coronavirus on to those that could get seriously ill.

Anyway, this wasn’t meant to be a rant about that, but more to say that things are a little happier in this household. Still bloody hard, but a little easier than they were! I’m back to hospital tomorrow for the next round of Dara…hopefully it will keep me on the straight and narrow until my Stem Cell Transplant is back on the cards.

What’s going on?

I am so fed up today.

Don’t really know why but just cross with everyone and wish I could get spirited away somewhere on my own just for a few days.

I suppose if I try and work it out, it could just be to do with lockdown and being fed up of how it is affecting us all. And my foot is still so painful…probably because I’m doing so much around the house and garden in an attempt to not go mad!

We still don’t know how long this is for. I appreciate no-one does at the moment. But with talk of the ‘extremely vulnerable’ having to stay isolated till the end of August, at the moment there is no real end in sight.

I think I’m quite stressed despite trying not to be. I’m worried about my treatment and when that will happen. Will it be too early? Too late? Will it impact my ongoing heath? I’m worried about what to do with the kids when it’s time for them to go back to school. The decision not to send Rebecca back in June wasn’t too bad but god knows what we should do in September. I’m worried about the kids in general and them not really being able to join in with friends over the summer. And those are just the things that I can share on here.

And then I feel guilty as people are going through much worse things and I’m just whining….again

Maybe I’m just tired. I’m not sleeping brilliantly because of my foot and my wrist. But in reality I think I need to get out. I think I need variety in life and the one thing I haven’t had in the past three months of lockdown is variety!! (I know….nor has anyone else!). But I think that’s what’s getting me down.

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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

Bleurgh – bored and fed up now!

So I’ve now been on treatment for 6 months and I am ridiculously fed up with feeling exhausted and good for nothing for 3/4 of the week. What is worse, is that my figures for the last 2 months haven’t improved, if anything, they’ve gone up ever so slightly. We’re still hoping that’s a blip but it does make you wonder why you put yourself through the grimness of chemo if it doesn’t do what it’s meant to do.

I shouldn’t moan. (But I will).

Other people have it far worse than me. Their side effects are worse (or they say they are!), they suffer with bone issues on top of all of the chemo treatment, they have other significant side effects or additional complications that make it worse.

But I just hate not being able to do the things I normally take for granted. Some days, I haven’t even had the energy to walk Marley. Others, I can’t make dinner for the kids and they have to do it themselves while I’m asleep on the sofa. The ironing piles up to the point the MIL offers to do it. I can’t really work now as I can’t focus on it and I don’t know when my bad days will happen sometimes, and working, even in my job, can take it out of me. Sport, and especially netball has had to be paused. I can’t go out more than one day at the weekend and even that, exhausts me the next day. And then when I do feel well, I do silly things like wallpaper stripping that totally wipe me out afterwards! That’ll teach us for continuing the house renovations right up to transplant date!

Basically, my whole life has pretty much gone on hold, and its a total drag if I’m honest. I’ve gone from feeling (even if I wasn’t ‘myelomawise’), 100% fine to feeling like I’m about 50% most of the time. It’s a strange concept taking drugs that make you much worse before they make you better. I know when I get to the transplant I’ll feel like 0% for a while, but it feels like the journey moves homeward at that stage. At this moment in time it still feels like I’m touring with no idea of what direction I’m going. Maybe I’ll feel better once I have a transplant date in the diary.

Anyway, I’m ok so this really isn’t a call for sympathy. Last week I was REALLY fed up, this week only semi fed up (at the moment). Today I feel ok – I normally do on a Monday until late evening…that’ll be the devil steroids (although they seem more under control now and the sleeping tablets help counteract that side of them too). Wednesday and Thursday are my worst days normally. And I just have to make the most of the weeks where I don’t feel bad on a Tuesday or Friday….I never quite know. Perhaps I need to avoid that wallpaper stripping in the house….but I get so bored if I don’t do anything!

Enough of the wingeing though. On a positive, my friends in Belbroughton arranged a brilliant ‘no frills’ disco for my #50KB450 at the weekend. It worked brilliantly, hopefully wasn’t tooooooo much work for them all, and raised £500 for Myeloma UK and my target. And it was loads of fun!!

It will take us over the 10% mark which is great! If you want to see an update on what has been going on just pop to my #50KB450 tab at the top of this page. The next event is that Deb and Brigitte are doing a 3 hour body combat event in Stourbridge on the 29th Feb.

Finally a big 🎉🎂Happy 18th Birthday🎂🎉 to Holly for Wednesday! She has really generously asked friends to donate to her fundraising page for #15KB450 instead of presents – not many 18 year olds would be that selfless! She’s also doing the 2020 challenge and running that many miles in 2020….mental! If anyone else would like to support her, it would obviously be great!

Time for an update

I haven’t written properly for a while. Partially as I’ve been busy trying to be organised for Christmas (just in case I get ill!), but largely because there hasn’t been an awful lot to say. Which has to be good news in the world of chemo and myeloma.

So I’m sat here at the QE in Birmingham, trying to make the most of my time waiting to see my consultant. For anyone who doesn’t know, it’s my standard monthly check-up. We tend to talk about my numbers, I ask the questions that have been building up, and then I leave.

We’re getting closer to these meetings having a bit more substance to them though. Who knows….maybe even today’s will have more to say. But the idea last month was that we’d start talking about my transplant in January, with the idea that I’d be having it in March / April. I’m hoping that’s all the same, although there was a slight thought that perhaps my numbers are starting to plateau a little….i.e the drugs may not be doing quite as much now as they had been doing. That’s my main question for today….what would that actually mean if they’ve stopped working.

The idea on DVD (darathumabab, velcade and dexamethansone) was that I’d be on it until the transplant, and then after the transplant, would stay on the Darathumabab as a kind of maintenance therapy…..well I think that’s what he’d planned! But if it has stopped working, I assume that carrying on with the Dara won’t be an option and that I won’t be on any kind of maintenance. That’s slightly unnerving as I had maintenance therapy last time and felt it really helped towards my 8 years of remission. I desperately want that long again. But maybe that’s expecting too much. I must look into what the new figures are for remission after a second transplant. It used to be that they expected you to get half the time you got for your first, but I think that’s old news. I know people who’ve had far longer from their second transplants, but I would also imagine that if you have people like me who had maintenance first time round, that you could still get less time from the second if you don’t get to have maintenance.

UPDATE:

So I saw my consultant yesterday and the good news is that my numbers have decreased even further from 11.2 to 8.6 – a brilliant decrease and it means those drugs are working (and perhaps it’s worth feeling rubbish most of the week!).

The bad news is that my consultant got it wrong when he said that I could come off the velcade and dex in January. Apparently I need to stay on them until March, and after that is when I’ll need a couple of months without them before my transplant (basically, they’re pretty toxic drugs and they want them out of my system). So it now looks like my transplant is more likely to be May/ June rather than the March/April that we thought.

I can’t decide if I think this is good or bad news. It’s definitely bad that I’ve got longer on the velcade and dex…they both make me feel fuzzy, exhausted and even sick at times. I’d been hoping I only had weeks left of it. But, the longer I wait till transplant, in some ways the better. Every month we seem to see developments in the treatment of myeloma, and we just don’t know what a month here or there might offer me. Revlimid, the drug I had as maintenance therapy last time round, but on a trial, may be available from October next year. But you have to start it within 3-4 months of your transplant. So if I can postpone my transplant, just possibly, I might be eligible to give it another go! That said, I might be told I can’t have it anyway!

I suppose if I’m honest, I’m just a bit fed up of feeling so shattered. It feels harder at this time of year too when everyone is enjoying a social life and I’m asleep on the sofa by 6pm. I’m slightly dreading Christmas Day and New Year as they both fall on my worst days of the week. But I want to be excited about them and I want to organise all the things that we have done and make it special for the kids and nice for Nick. I wish the drugs could all go on hold over Christmas and that I could just feel normal again for a few days. Thank god my temper seems to have calmed a little! That’s the only positive thing. I’m at hospital on the 22nd for an MRI to check out my back, the 23rd for my infusion and chemo, the 30th again for more chemo and then on we go. It makes me feel tired just thinking about it all.

Anyway, I think I’m just tired today so hopefully I can gee myself up a bit tomorrow.