Thursday, 31 March 2011

Feeling SO much better - Day 10

Wow, the difference a few days can make.....and here's hoping I'm not tempting fate by writing this!

Got out walking again today for the first time in a week and I feel so much better for it. Much slower than normal as I was trying to take it easy....Nick is away and I need to be sure not to wipe myself out for the kids. But I just love iphone and me and the world! Oh and the snail that made me think of myself!

Anyway, I'm back to the Marsden tomorrow for the last of my Velcade injections in this cycle...then I get a week off the lovely journey and hopefully won't be as wiped out as people suggest that you can be. Hopefully I'll be in and out as quickly as last week, but won't feel as rubbish when I get home! At least this time, the inlaws are here to help out till Nick gets back so if I need to rest, I can.......assuming I can let them take over....not so good at that one with them for some reason.

They're staying till Saturday lunch (an early mothering sunday lunch celebration) and then we have till Sunday afternoon just the 4 of us before Nick is off on his travels....again, poor bloke! Still we're nearly at the end of the travelling and hopefully then things will get a little easier on all of us.

Tuesday, 29 March 2011

Expectations - Day 8 VCD

I've read a lot of blogs since I was first diagnosed. And I'm still not quite sure what the point of them is.....despite writing this one. I'm not even quite sure why I write this anymore....whether it is for me, for other people who want to know what is going on without hassling, for people who have been diagnosed and need to hear how it is......

Perhaps it just doesn't matter. I started writing it because I wanted a diary of what I felt and how this cancer was affecting me, but I'm not sure it has quite ended up like that. It is hard to be 100% honest about your feelings when you know that some of the people who read it would find that really difficult. And to be honest, I'm not the most 'eloquent' of writers!!! I've read some really inspiring blogs recently and for a brief moment they made me question whether I should carry on writing this. Just who exactly am I helping!!!

But I'm afraid I am going to carry on with it....after all, if you don't like the content, you can go and read the inspiring blogs and I can write to myself :-)

Anyway, the good news is that after a major blip on Sunday evening and Monday, I feel a lot more positive today. I slept a little better last night.....still waking every 20 minutes or so, but it felt a bit more restful and a little less stressed! Wierdly I did dream all night about the upcoming transplant...ironically linked to our Occupational Health department at work, the family and all sorts of strange things. But I woke up feeling slightly more refreshed and ready to face the world. Good really as Nick has gone off to Italy today till tomorrow night (back and then off on Thursday to Spain!).

Despite Rebecca choosing today to have her blip with life and with Nick going away (bless her), we all got off to school ok and I made the hospital. I was out in about 3 hours and in that time actually managed to dose for an hour or so which was a huge help to the 90 minute drive home. Still shattered now and will be off to bed in the next half hour or so, but I managed and there were no tears....always a positive! Not even the cost of the hospital parking made me cry today!

I am really loathed to listen to much to what other patients experience are with Velcade as I don't want to give myself an excuse to give up on doing stuff and life for the next 3 months....but the more I have heard, the more I think that perhaps it might be a bit of a write-off and that the sooner I give in to that and accept it, the happier I will be with it. Someone wrote to me today and explained what a powerful combination of drugs I was on. They know a lot and said that it was unlikely I'd be able to do a lot whilst on it. And scarily, whilst on revlimid, my drug free week was a great week, it sounds like on Velcade, you are totally wiped out on your drug free week......god knows what that will look like!!! I can't really imagine being more wiped out than I have been at times this week.

So my new plan is to lower my expectations.....hmmm, yeah right! I still want to go for a walk tomorrow, make fish mornay for the kids and a loaf of bread......oh yes and there's a bit of ironing and swimming after school. BUT, somehow, I feel a bit like if I don't manage one or two of those things it won't be because I'm a failure......and if I can stand by that thought, then I've moved on somewhere over this first week of treatment.

Sunday, 27 March 2011

Bloody knackered

Got it wrong about today not impacting me!

Managed the day at the christening pretty well I think.....didn't really want anyone to think I was doing anything other than coping!! But got into the car and was shattered and asleep within 20 minutes! And then came home and was asleep for another 2 hours! Just trying to sit with Nick for an hour or so that he doesn't feel totally neglected!

I'm feeling quite frustrated about how the treatment is affecting me even though I know it is still early days here. I have put on nearly a stone since I started on the Revlimid back in November, and only in the last week or so have I felt like I've been making a start on changing this. I've walked 3 times this last week and while I find it a little tiring, it has really invigorated me doing it. But the problem is that by doing that, I have no energy for anything else. How can I do things like that, if it means I struggle to pick up the kids, make their tea and generally get on with normal life.

I feel a bit pulled from pillar to post with it all. I want to be totally selfish and if it was only Nick and I, I probably would be. But it isn't and that is tough. I know there is lots to do like photo albums and scrapbooks that don't have to take a lot of energy...but part of this is about me getting me feeling happy about myself and at the moment I dislike the way I have allowed myself to fall to pot! Stupid I know, and this isn't a bid for comments telling me it doesn't matter - it does to me!

I know I'll get there, and I'm hoping I'll get more used to how this treatment is going to affect me as time goes on. And hopefully with that will come the balance I so desperately want to get to!

Positive thoughts, positive thoughts, positive thoughts!!

Nearly a week on - day 6 VCD

Well it's been a pretty good start to the first cycle. Tiredness is the main issue as I'm not sleeping brilliantly even with the aid of sleeping tablets. And I'm only taking those on nights of desperation!
My worst night so far was on Friday. I'd been to the Marsden for my second velcade dose and driven home....all good really but by the time I'd got home i was dead to the world! And very very emotional! Lucky my boy was at a friends for tea and our neighbour had got Rebecca. She bought her home, saw the state of me and kept her for tea until nick got home...a real life saver.
Yesterday was better after a slightly better sleep and I even got out working a bit inthe garden. and made bread.
Anyway this morning we've had an early start to go to the christening of one of nicks cousins kids....hopefully won't flake me out totally!

Wednesday, 23 March 2011

It's all begun - VCD Day 2

So I started on velcade (with dex and cyclo) yesterday for at least 4 cycles and feel much happier now it's . And hopefully the velcade will knock the MM to the ground!

So what is velcade? Apaprently it is a protesome inhibitor which can cause the cancer cells to die and stop it from's hoping!
It involves about a 4 hour trip in the hospital. You give blood and have to wait for that to come back before the prescription can go to pharmacy (the drug has a short half life and s v expensive, so they have to know you've arrived and are fit to take it). Then I was hooked up to fluids for an hour. And then we just had to wait for ages for it to come back from the pharmacy. It finally came at about 2.30pm and apparently it normally doesn't come back until 1pm till 2pm. It will be a bit of a bummer with school pick up (we live an hour and a half from the hospital!) but we'll manage. Anyway, all that for a 3 second intravenous!

I have a 3 week cycle where I have to go in on the Tuesday and Friday of the first two weeks, and then I have a week off. And it is taken with Dexamethasone (steroid) and Cyclophosphomide (chemo). The expected side effects are v similar to before but Peripheral neuropathy is more common and can cause tingling/numbness in fingers and toes, pains in the calves and sole of feet, diahorrea or constipation and fainting. Oh and the usual sickness and tiredness. I'm hoping not to have any/ many of them! The only one I'd quite like is the loss of appetite.....might help get rid of the stone I've put on!!!

Anyway, nearly 24 hours on, and the side effect so far is that the lack of sleep has kicked back in from the dex. Obviously the revlimid helped me last time and stopped the problems when I took it in the such luck this time, and I wake every 20 mins to hour! Oh well, hopefully only for 3 months.

Signing off as I go off for a 2 hour walk to try to pretend none of this is happening :-)

Monday, 21 March 2011

Life in the hands of a computer!!

What a nervous morning! First of all I was waiting and waiting until I felt I could call the registrar at the hospital to find out about the outcome of their meeting. Finally at nearly 11am I called her and she told me that they had decided the bone marrow biopsy wasn't as bad as they had first thought and that I had achieved a 15% remission, therefore classed as a partial remission, and so would go through to the randomisation.

So then I called my trial nurse, who is lovely too (aren't they all at the Marsden!), to ask if she had done that, and whether it would be possible to call me once she had. She was so great, and had been just about to do the randomisation anyway, so told me that she would call me back once the results had come back...apparently they have to call up, and then the results are faxed to them!

So the outcome is........drum roll......VELCADE! :-)

I'm pretty happy about that as I think I would have always looked back otherwise if the transplant hadn't worked well and wondered 'what if...' So remind me of that when I'm moaning about the side effects of the velcade! Also, life gets easier for Nick at work over the summer months, so that means he will be more relaxed about it all - another positive!

Anyway, must go for now....will maybe update this later with what Velcade will mean....or I might wait till after I start it at the hospital tomorrow!

Saturday, 19 March 2011

Still don't know......

Friday was a remarkably busy day and so I'm afraid that a coffee morning at mine, followed by the kids having friends over for tea (didn't leave till 8.30pm :-) ) has meant that I haven't got round to putting my results up.

To be honest, I'm not quite sure what they mean anyway. My paraprotein has dropped from 27 to 24 - good news. But it looks like the trephine that I had been waiting for from my bone marrow doesn't look so positive and seems to suggest that it is still at 50%. Only 10% down from what it was when I started the treatment. I had convinced myself that my bone marrow was going to be good so it was a bit of a blow to hear that. The registrar did say that there was a note attached saying that it was very patchy and that this could mean that the figure was higher than it should be, but I don't quite get that. Hopefully all will be explained at our next meeting on Tuesday.

All the consultants at the hospital, including Gareth Morgan and Faith Davies, will be discussing my case at their MDT (multi-disciplinary team meeting) on Monday so I have agreed that if I call the registrar later in the day, that she will let me know what their thoughts and decisions are. And hopefully, if it isn't to put me back on revlimid (which I'm doubting if my bone marrow is so rubbish), they will be able to tell me if I have been picked for velcade or transplant and we can start moving on with the treatment.

I have to say, I don't really care anymore what I get given. I just want a decision. I have really struggled this week and am more uptight than I've been in a long time. My shoulders are really tense, and I have developed a back pain that I used to get when I worked in London and was stressed with my job - I haven't had it for about 9 or 10 years but it used to feel like I had a fist stuck in my shoulder blades. Not pleasant. Anyway, hopefully a decision tomorrow and some detail on Tuesday will help that all to go away.

We have the Christening of one of my best friends little girls tomorrow so hopefully the weather will stay sunny and it will all take my mind of this nonsense while we enjoy it!

Tuesday, 15 March 2011

on......and on....and on......The end of cycle 4

Off to the Marsden with my big sister today (Nick and I decided he needed to get to work and make sure they let him keep his job!) for what we thought would be a relatively quick appointment. Oh why haven't we learnt our lesson???? In at 10am and out at just before 2pm....urrrgggghhhh!!!

Anyway, 2.5 hours after giving blood and having my zometa (which is a bisphosphonate to strengthen the bones) we finally got in to see one of the I sort of wondered if this was a sign as I was pretty sure that if there was anything major to be told, or anything that was going to be changed on that day, that I would have been told to see my consultant not the registrar. Ominous from the start!

So results: Well, my hb (haemoglobin has dropped down to 10.8 again but nothing too worrying, and my total protein has gone down too. Now it isn't a straightforward link, and you can't rely on it, but seeing your total protein drop can often be an indicator that your paraprotein (pp) has also dropped. And to date, this has been the case for me. Now, I was slightly surprised at this, and therefore forgot to ask the obvious question - 'if when I get my paraprotein result back it has dropped by around 5 again (what I expect it to drop by looking at previous results) does that mean I haven't plateau'd after all, and does that mean that I would stay on the revlimid?' Scenario 1 - question unanswered! (Or not even asked!)

So that was the pp level and hb. Now to the bone marrow biopsy. When they do this, they do two bits; a 'trephine' and an 'aspirate'. Don't hold me to this description, but I think that the trephine is where they actually dig into the boney bit of the bone marrow, and the aspirate is where they suck up the more liquid bit. Apparently it is easier for the myeloma cells to avoid capture in the latter, but my results for that were back and the great news is that it hardly showed any myeloma cells. The less positive news is that it is the trephine that is more reliable, and they are expecting that with my paraprotein level still being above 20 (and it probably will be even with a drop) that the trephine will show a higher level of myeloma cells. BUT, I think they might be wrong, Dr Gascoyne that I am!!! lol!! But seriously, when I was first diagnosed, I had a pp of 32 and my bone marrow was just under 10%. So why this couldn't be the case now, I don't know. And if it is under 10%, they would normally be prepared to do a transplant and see it as really positive.

Now, the registrar seemed to suggest that if both the bone marrow biopsies came back really low, that they would be concerned why this was the case, when I still had a high pp. She sort of wouldn't answer what would happen next, so whether they would do other tests, I don't know. The only thing she did say is that sometimes, it is because someone's myeloma is in patches, and that they may have missed it when they did the biopsy. Which could mean another biopsy next week I presume :-( Not nice as I hate them.

So scenario 2 is that if my bone marrow has dropped and my pp has dropped but still only enough to class as 'no response, I would go straight onto 4 cycles of a drug called Velcade (12 weeks in total)

And scenario 3 is that if my bone marrow and pp have dropped enough to class me as having had a 'partial response' I would go into what I have described before which is a randomisation as to whether I have Velcade or Transplant.

So 4 hours later, and sadly we're not much further on with the whole thing. In fact, the concept of staying on revlimid has come back into the equation. I have to say that it's hard to know what I would like now. The later we can do the transplant, the later it is that the clock starts ticking again, and hopefully every month means an extra month for me in total. BUT, the idea of going back onto the revlimid and it potentially not working while I'm on it doesn't appeal - why would it? The idea of being on drugs that make you feel rubbish but don't lower your levels isn't great! And the idea of being on velcade? Well I don't mind that one so much.

I am a bit happier as the registrar explained to me that when they harvest your stem cells, the myeloma ones don't tend to go into the machine and so that is why it doesn't matter so much if my pp is still highish when I go into transplant. So once again, the transplant has become less stressful as a concept to me.

The other thing today was that the registrar was actually a pediatrician doing some work on myeloma. It is the first time I have been asked about the children and how they are coping. And what was nice was that she said she would go away and look into the support the hospital could offer/ point us to that might help us in telling the kids more about what is happening both now and in the future. At the moment they are too young to know too much. They certainly don't know about the fact I am more than likely to die from this. But one day they will do, and we don't ever want them to feel we have lied to them or misled them with what we have told them before. It's been hard this last week and I've thought about them a lot and how it will affect their childhood. I've cried quite a lot too with it all. They don't deserve any of this - none of us do, but especially not them. A friend has had a hard time with one of her children too and that has really brought it home to me how this awful disease causes so much pain to everyone.

But that is a sad note, and hopefully now we have started the process to get some help with how to deal with that.

Anyway must's been a long and exhausting day. Take care all x

Sunday, 6 March 2011

Just loving weekends....

I'm writing this on my iPhone so it won't be a long one! I just wanted to write just how much I love my family. I doubt I am verbal enough about what a rock Nick is to me and this weekend he has just made me remember. He hasn't particularly done anything, but he has just been there, has done lovely things with the kids, and has allowed me the luxury of a lovely weekend with no pressure....all good :-) The kids have had a fab time, Sam had his first time at football, we treated them at the toyshop, they went to the park, did loads of arty stuff and then we watched the film of Peter Pan as a family (well I fell asleep but we were all together which is rare!). So on a Sunday night I'm already looking forward to next weekend!!

Wednesday, 2 March 2011

Update on Treatment options

So, we went to the Marsden again yesterday to speak to our lovely lovely consultant and I have to say, I have walked out a little bit more confident, if a bit sorer (will explain in a bit!)

Faith was very keen to say to us that she doesn't see my response as a failed response, but more as one that whilst not as good as it could have been, has still been a response nonetheless. We talked lots about where my 'standard' paraprotein might be, and that it may be generally higher than other people anyway, and that if I had a bone marrow biopsy (bmb) that my bone marrow could have reverted back to under 10% despite my paraprotein still being relatively high at 28.

We then talked about the options moving forwards. She is fairly confident that we have now seen a plateau in my results, but we need to wait till the end of this cycle so won't get the results of that till around the 22nd March. Given this, I would then get randomised onto either velcade or transplant. Now obviously, the transplant was something I was really nervous about having heard bits and pieces about it being better to be close to complete remission before you go in for it. She has said that there is no concrete proof on this, but that this is why they have added the velcade option to the Myeloma XI trial to see if there is any indication that a better initial remission helps post transplant.

However, she seems to truly believe that it is the 3 months post transplant bmb that is the important decider in how I will respond to treatment, and was very keen to say that it would be fine to use the velcade at that point instead, if I wasn't responding well to the transplant either.

So we feel much better about it as an option. We also asked her about what would happen if we were uncomfortable about the option that came out of the randomisation, i.e if I got put to transplant but didn't want to go ahead. She felt that it would still be dependent on the results of the bmb and my paraprotein but that the reality was probably that she would still be moving down the transplant route! So it seems like there would be nothing to be gained by coming off the trial.

I only cried once in the whole process (!!) and she reiterated to us that she wasn't worried at all about my results, but more about how I was with the whole thing. Normally, she would have waited till my next appointment on the 15th to do the BMB but she asked if we wanted to do it yesterday so that the results would be back around the same time as my paraprotein on the 22nd, which would allow us to start making the decisions. We pretty quickly decided to do it and off I went for the barbaric process of having a cork screw stuck in my back!!! I hate it so much and it hurts terribly, but it is over now for another 4 or 5 months I hope!!

So now we have to wait until either the 15th / 22nd to find out whether I will end up on velcade or on the transplant route, but at least it is only another 3 weeks.

We also found out whilst waiting for the BMB that they have provisionally booked me in for a stem cell harvest on the 11th and 13th April...scary as that would suggest a transplant around the end of April/ beginning of May but at least now we can start planning in case that goes ahead. And I feel much better being able to plan....control freak that I am!!

And to tie in pretty nicely, work have suggested that they can only commit to work for me till the end of March. So perhaps it all ties in pretty nicely and things are just meant to be.

I just want to say thank you to all of you at this point who have been following this, commenting and generally supporting us through all of this, either openly or via my family. We have really learnt who our friends are and who are there for us whatever, and that means so much to us. We have made many new friends (me especially) and we really value your help through it all. It is such a tough thing to go through at times, but friendship makes it so much easier. So thanks!

My family's snow fun!

My family's snow fun!

Snow Fun

Snow Fun