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 growing....here'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 injection...lol!

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 evening...no 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 :-)

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!

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!

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 registrars....now 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 go....it's been a long and exhausting day. Take care all x

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!!

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!

How Ironic?

Isn't it just ironic that the song that my kids keep putting on the ipod (after Barbie Girl) is Fame's 'I'm going to live for ever'!!

Last week it set me off in tears everytime I heard it, so it's a good sign that this week I can hear it without feeling sorry for myself!!

Off to the Marsden tomorrow to meet with my lovely lady to hear what will happen moving onwards. We're expecting for me to get moved onto Velcade or have to come off the trial to go onto different drugs, but we don't know what the timescales look like for that really. Lots of questions for them about what it means for me that the Revlimid didn't work, effect on life prognosis etc, as well as what happens if the velcade doesn't work next....though I'm not sure I want the answer on that one as it won't be good news if I have cut out 2 of the major drugs!!!

Anyway, I've had a much more positive weekend and start to the week so hopefully that will be backed up tomorrow with some good news while I'm on a roll.....