DAY 7 - CRD - It gives me fever!

So I knew things were going too well! Nick went off on business to Madrid yesterday morning, and I got through yesterday no problems, just to develop a fever at about midnight last night. I spent the whole of the night with a fever of over 39.

My parents were fantastic and when I called them at 6am, they came over so that they could help do the school run, and look after the kids for me. Then it was off to A&E to check that I wasn't neutropenic (think that would mean I was incapable of fighting infection) for 3 hours with a cracking headache. Anyway, all came back clear so I've spent the afternoon in bed trying to get rid of the headache that had obviously developed.

But I'm feeling much better now (hence why I'm on here!) and hopefully will get a good night tonight. Poor Nick feels terrible that he's been away and that he'd come back, but it seems unneccessary. I hate the fact that the myeloma might start impacting our life....I knew it was coming, but I think I had hoped I'd be the exception, that everything would run smoothly, and that all would be good at the end of it.

Anyway, tomorrow is cyclophosphomide day (chemo drug!) so hopefully that won't do anything major.

Day 5 - CRD - still going strong!

5 days in, and I'm now on day 1 off the Dex, and still seem to be doing fairly well....fingers crossed!

I woke up yesterday and freaked ever so slightly when I looked at my legs to see some big raised bruises. I think that it can be the start of thrombosis so it worried me a bit for the day, but the bruises certainly haven't got any bigger and if anything are a bit more subdued.....so I think it's a bit more of wait and watch!

We had my nieces 21st birthday in the Midlands during the day which was lovely as lots of the family were there and it was nice to do normal stuff. I think I was a bit not myself (so Nick says!) and quite quiet, but I think that was as much to do with the fact I was a bit worried from the bruising. But I got more into it as the day went on and all in all it was lovely and great to see her looking so happy and grown up! I tried a glass of champagne to toast her, but sadly it just tasted like salt water so I gave up on that pretty fast.....everything seems to taste of that at the moment so I'm hoping that perhaps I'll lose weight on chemo rather than putting it on!!!

It's been a fairly chilled day today given we knew it was my first day off dex. It's fairly common to have a come down after you come off it, and it can apparently make you quite depressed and miserable, but this, like the 'up' feelings when you go on it, seem to have passed me by. Fingers crossed I haven't spoken too soon on this! But we've spent the day just pottering, taking the kids to and from parties, and having friends drop in for the afternoon.....all very nice.

So now, it's a bit of x-factor, a cuppa and then off to bed I think!

CRD - Day 3 - Still looking promising!

Has to be good hey....even missed my posting yesterday as I was so busy doing stuff!

Well, so far so good. I've still not experienced very many side effects and those that I have are tiny and almost not worth mentioning. Slightly funny taste in my mouth, drinking more than before (5-8 pints a day), a slightly fuzzy head at times and I seem to be a bit clumsier. But, I think a lot of these probably stem from the one main one which is that I'm not really sleeping well at night. I seem to spend it in a 'relaxed slumber' and wake up from this at regular periods. I'm not sure I'm getting any deep sleep at all, but to be honest, that's ok if it's the one main side effect I get.

I'm trying to keep my days a bit clearer so that I can have an hours sleep after getting the kids off to school, but to be honest, I'm not good at doing that in the day at the best of times, so trying to do it on Dex, isn't that easy! I've only got another day of Dex before I get a break for 8 days, so I'm hoping the sleep thing might sort itself out over that period so that I can catch up a bit!

So, all in all, nothing bad to report....life is definitely going on as normal and is as busy as ever....all good!

Will try to keep updating regularly!
x

DAY 1 - CRD Regime - so far so good.

I spent the day at the Marsden yesterday and was lucky enough to meet Faith Davies who talked me through the nitty gritty of being on the Myeloma X1 trial.

I am lucky (I think) and will be having Revlimid instead of Thalidomide - if I'm right, I think it is derivitive of Thalidomide but has much better responses in patients in terms of extending the period of disease free period after a transplant.

Anyway, went in at 10am yesterday, gave more bloods as they had to do yet another pregnancy test (to check they weren't giving lethal drugs to a baby!!) and then met with the research team. Once they'd talked us through what to do if anything goes pear shaped, it was off for a full skeletal survey. We'd finished all of this by 12.30 and whilst they'd warned us that we wouldn't get my prescription until the results of the pregnancy test were back, we still expected to be out of there by 3ish. But, at 3pm we got told the results had only just got to the pharmacy and that we'd have to wait for at least an hour before we could pick them up. Anyway, the long and short of it was that we didn't get out with my bag of drugs until 5pm!!!

And wow what a bag! I'll try to attach a photo at some point but today (and it is one of the worst days!) I had to take 36 tablets. Anyway, I still feel fairly normal and the slightly dazed feel, I think is due to the fact I didn't sleep last night.

So all good so far on day 1, but will try to update on here as often as I remember!!

Flu's gone but bone pain arrived!

Well just a quick update (I always said this was a diary for me as much as for anyone else!).

I lost the flu like symptoms by yesterday evening and just had a bit of a sore neck. But I have to say that today I seem to have had a lot of aching/bone pain at the site of my original bone marrow biopsy. What with being sore anyway from Thursday's biopsy on the left hand side, the last thing I wanted was pain on the right hand side too!
So I look a bit of a state at the moment and struggle getting in and out of chairs/ cars etc! But the hopeful thing is that I've read somewhere that the side effects tend to only happen with the first infusion, so I'm keeping my fingers crossed that next month, I won't react so strongly. And if not, it sounds like if they they slow the drip down, that that is able to reduce the symptoms. Here's hoping!

2 days and it will all be starting.......

How naive am I????

Well, I woke up yesterday thinking how easy things had been. No reaction to the zometa (which I'd expected in the first hour after I'd had it), no real pain from the biopsy (first time it hurt so little) and basically I was on a high and feeling pretty positive about the whole 6 months ahead. After all, everyone has kept telling me that you can just keep going on the CTD induction therapy and that it doesn't have a major impact. And I believed them.....stupid perhaps!

So all was going well till yesterday lunchtime when I started to feel quite achy in my collar bone and ribs. Nick suggested it was just a reaction to being so tense during the biopsy. But by the evening every bit of my body was aching and I had cramps in my calves too. It felt like mild flu with my neck being particularly uncomfortable. Anyway, I'd got an evening out planned to celebrate a friends 40th and I was damned if I was going to miss that....so off I went and had a few glasses of wine.

By the time I got back at 11.30, the aching was really getting me down and poor Nick had me in tears about it. I so hadn't expected a side effect from the zometa and yet here I was feeling like this. No-one had told me I might feel bad from it so it was totally out of the blue for me. And then I admitted to Nick, that I hadn't really expected many side effects until I got to transplant time.....and he thought I was joking! I have listened to so many people telling me it doesn't affect you too badly, that I think I'd gone to the opposite extreme...no wonder I've been able to be so positive. And no wonder everyone thought I was being remarkably brave.....in reality it seems that I've just buried my head in the sand! Ooops!

So today, I'm a bit nervous of what the next 6 months will hold for us. I still want to try to be strong, but I have this feeling I'm going to be more wiped out by this treatment than I had expected. So if I pull out of things, please forgive me, and if I don't behave in the way you expect, I hope I'll be back to normal soon. I need to be strong for the kids (and for Nick) but that might not leave much left for anyone else!

Anyway, better go and get lunch on now....

Myeloma 11 and the story goes on!

Today has been a strange day. Yes, I was due to start chemo today (CTD), but surprise, surprise, it hasn’t gone to plan….nothing seems to with me! Got to the hospital, they took my blood, gave me zometa ( a biphosphonate) and I waited to see the Professor to have him give the go ahead for CTD.

I went in, he agreed it was time to start treatment......and then told me I had the choice of CTD or the Myeloma 11 trial! Arrrgghhhh! It was all meant to be so simple. I didn't even know the trial was on offer. And then there he was telling me I was the perfect candidate for it!

It offers the opportunity of having revlamid instead of thalidomide in the early stages (if I’m the 50% that gets that) and revlamid as a maintenance drug (as opposed to no maintenance drug). It sounds like in a french trial it did really well so we decided to go with it but it means I don’t start now till Tuesday as they couldn’t do all the trial prelims! I've attached a link for anyone who wants to know more about what will happen.
http://www.controlled-trials.com/ISRCTN49407852/myeloma+XI

So, off I went for more bloods - they had to check I wasn't pregnant (good god no!), and all sorts of other things, and then I had to have another bone marrow biopsy. I wasn't too worried about it as the last one hadn't felt too bad....I mean it hurt, but it wasn't as bad as the first. Hard to say exactly how it feels. Anyway, I have to admit that I burst into tears at the end….I think the whole stress of being strong for the last 2 weeks came out when they did the last grope around!! I felt like a bt of a failure for being so soppy! But then again, I do feel I’ve held it together really well over the last 2 weeks.

So overall we're pretty positive that it's the right decision to hold fire for a few more days. But it is also quite tough psychologically. In fact the last year and a half have been harder psychologically than anything else. But we're about to get going and hopefully there'll be no regrets.

The hardest is most definitely with the kids. We told them two weeks ago and they took it in a fairly matter of fact way. After all, at 4 and 6, they're too young to really get the whole thing. But interestingly, sam especially has mentioned it a couple of times, and seems particularly concerned about when I'm in hospital. At the time we told them, we wanted to tell them about all of it so they didn't see it as the medicine not working when I go in for the SCT and am in hospital for 3 weeks. But now, he has mentioned a couple of times about it.  I could do this whole thing if it wasn't for the kids....I hate the idea of it affecting them and them changing because of it all. They're so little and really don't deserve to have to see their life become harder. Hopefully as parents we can keep it as normal as possible for them....that's our aim and hopefully we'll do it!

So tomorrow is another day, and hopefully we can make the most of a weekend as a family of four, treatment free :-) Has to be a good thing! Nick has even promised to do another roast like he did last Sunday......yummmmmmm!

I'll beat it yet!

Where to start?
Well probably with the fact that over the past week, I have had a pain developing in my hip area....around where they do a Bone Marrow Biopsy. The pain feels exactly like when I had the biopsy too which made me wonder whether or not it was bone pain. It's so hard to know what bone pain feels like and I've had so many times where I've thought I've felt it, but it has just been stress causing it.....and I suppose there is a slim chance this is the same.

Anyway, I had my consultant appointment today and told him about how it felt, and he immediately told me that he wanted to start the treatment. He said that whilst we could wait a bit longer and see how things go, that with my high paraprotein levels, lowering (again!) haemoglobin levels, and now this pain, that he felt it was important to get on top of it before it caused me any serious end organ damage.

I know that there will be some of you out there thinking that perhaps I should fight this one and hold off longer, but to be honest, we choose this consultant because he was one of the best, and I really think we trust him to make the right decision here. I don't want any breaks or anything if it can be avoided and treatment now will hopefully give me a positive future.

So I will be starting chemo (CTD) 2 weeks today. CTD is Cyclophosphamide, Thalidomide & Dexamethasone. I'll take it in tablet form at home along with having to inject some form of blood thinner. It sounds like it'll last for around 3 months after which I'll probably have my stem cells harvested (no big deal I don't think!) in anticipation of a transplant sometime not too long afterwards. The chemo shouldn't cause the stereotypical side effects and I should keep my hair etc. It sounds like I may go hyper at times, exhausted at others, and perhaps swear at Nick a bit more often than usual (he can't wait!).

I'm feeling pretty positive about the whole thing - the consultant seems to think that because of my age/ cytogenetics etc that I have a really positive prognosis after treatment and that potentially I could have years and years of remission from a transplant.....and that is such a great thought after what we had originally envisaged (2 - 5 years in total! Damn those out of date internet figures!)

I probably have much more to say, but it's been a pretty exhausting day so I'll leave it till later in the week.

xx