Friday, 27 May 2011

Countdown to zero!

So it was the end of cycle 3 meeting on Tuesday, but I thought I'd wait till now to update you as I don't get any figures until a few days aferwards.

So, where I was at 12, I have dropped down to 8....single figures, hurrah!!! They have said to me since the beginning that 'under 10' is what they aim for before they like to start on a transplant so I am really happy to finally have reached that....even if I plateau now, I am at a fairly good level. And if you consider that they were going to do a transplant (if I'd got randomised to that) when my paraprotein was at 27, this is SO SO much better!!

The other good news is that my other blood counts look a bit better stem cell injections this cycle which suggests that perhaps my bone marrow is starting to produce the cells on its own again...the white and red cells, and my neutrophils....all good news as these are what compromise my immune system.

In terms of the neuropathy, they have now reduced my dose. Hopefully this won't impact on my speed of response, but it could do. They said that it was important to do this as whilst velcade doesn't normally cause long lasting neuropathy damage, it can do. So it is crucial not to have me at a stage that I can't cope with the pains, as if I was left with them I could be permanently disabled so to speak. It is a shame, but to be honest, I'm not sure I'd want to cope with much more in that area. My feet nearly always feel like they're burning off which isn't nice at all!. The calf pains have reduced the last couple of days, and I'm hoping it will stay like that. What I didn't ask is whether they would up my dose again if things get better but my counts slow down...there's a question for next time!

Anyway, half term starts today so no rest for the wicked, especially with two hospital appointments in the middle of it! Luckily my sister is around to help with the kids so that is good! Just have to work out how to rest in the middle of it all.

So in terms of timescales, for those who have been asking, we're still not much clearer! From what I can gather I will at least go through cycle 4 (this one) and cycle 5. That is another 5 weeks from now. If I got down to zero by then, I'd probably be looking at 4-8 weeks after that for the transplant....likely to be more like 8 weeks by the time they get the results of a bone marrow biopsy and get all the dates booked in.

However, they can give me up to 8 cycles of velcade and so if I had the extra 3 cycles, that would be an extra 9 weeks onto that timescale. So I think (!) that the latest I would have the transplant would be mid October, but it could be anytime between mid August and then depending on what happens with my paraproteins. Clear as mud?

Right, no sleep last night (tried to go without sleeping tablets...bad mistake mid steroids!) so am exhausted and going to chill out now.

Wednesday, 18 May 2011


So much has gone on this last week or is like a disaster film really. Everywhere I turn I seem to get told bad news but perhaps that's just life as you get older. So, I'm going to try to stay positive with it all!!! Hurrah! So today's post is an update...not to be negative but just to give some facts.

This cycle has seen mixed side effects. Up till Saturday, I'd been doing really really well which is good news. Even the peripheral neuropathy seemed to have calmed down and all was looking great. Me being me though had wondered if that meant the drugs weren't doing their job. Well, that will teach me to worry about everything, as Saturday afternoon brought the start of the exhaustion again (probably partly to do with all the bad news I'd been hearing) and then by Monday, I had started getting quite bad PN in my feet and hands. Which has now nicely spread into my calves. It is a really weird sensation....the soles of my feet feel like they're on fire and my calves feel like I have shin splints in them. Peculiar! It's been pretty frustrating as it hurts a bit to walk downstairs and to crouch etc.....I know, I should just stop crouching and walking!

Anyway, I've spoken to the hospital and it sounds like there may be some medication they can give me to help with the burning sensation but unless I travel down there I can't get it so I'm hoping it calms down over the next day and I don't need to do much as anything I'm not sure how safe I am to be driving long distances - Nick would probably have to take the day off work to take me down there and I'd rather avoid that if I could. He's been a gem though and has taken the kids to school today so that I could just stay and chill at home...which I have done. Feet up and doing nothing....unheard of but very very blissful!!

Tuesday, 10 May 2011


Well I owe all of you who follow and comment on my blog a big apology. I should have updated this on Friday and I've neglected to do so.

So first things first. It looks like I got ahead of myself on the change there but they've now explained how things have changed slightly which mean that the way I look at my figures now needs to change. Importantly though my paraprotein HAS gone down. From 15 to 12. Not huge but still a decrease which means that, at the moment, I am still responding to the velcade...big thing for me...almost bigger than the reduction in the pp. So what it means is that what I was using to predict my results, my total protein, is now normal. Basically where for normal people the paraprotein is 0, the total protein is normally between 60 and 72..mine is now down to 64 so I should no longer look at that as an indication of how the myeloma is responding as it is the same as anyone who doesn't have mm.

So it's good news really. The other bonus is that it'll stop me from trying to predict the results every 3 weeks. Now I'll just have to wait till the pp rests get back.

In again today and hopefully all is going fine. Seem to have a slightly low blood pressure so things have taken a bit longer. Thats because the velcade i'm on can cause hypertension so they have to be a little bit careful. Still will hopefully get home in time for the school run.

Wednesday, 4 May 2011

And again....bollocksy bollocks! (apologies for the second time to mum and dad)

I was going to save writing again until my next check up on Friday when I would know some stuff for certain but this last week has just been so eventful, and I now feel I must have been such a bad person in a previous life (thank god I don't believe in reincarnation in reality!!) that I thought I'd share.

So it all started on the day of the Royal Wedding (and can I say what a lovely, lovely ceremony I thought that was....perfect and it seemed so personal for such a HUGE event). We had friends over for a bbq lunch with their kids and after having spent a number of hours eating in the garden, the men decided to take the children to the park for a quick run round. We were to join them 10 minutes later. 8 minutes later, they're back with Rebecca being carried. Bless the poor honey, she had fallen off the posts on the obstacle course, hit her eye on the next post and gashed it open. 1.5"!!!! So a couple of hours in A&E, glue and 10 butterfly stitches and we were home! I have to say she was very very brave and we were very proud of our beautiful, if bloody and bruised girl.

Anyway, all stayed quiet until my next check up yesterday at the Marsden. I'd been a bit nervous as the cheats test that we've been able to rely on until now had not looked good when I was there last 2 weeks ago. But since then, I'd felt pretty rubbish and so was hoping that the drugs were kicking in. Sadly, it looks less positive than that and my results look the same as they did 3 weeks ago at the last consultant appointment. I will find out for definite on Friday. I spent the rest of the day pretty miserable and couldn't stop crying at the hospital (which I have NEVER done - I want to be known as the strong, happy patient despite being young with kids!). And it was a long day - 6.5 hours as it was mega busy and then they forgot to send my prescription down! I'm not worried about where it leaves me now, as I am comfortable about them going ahead with the transplant which we think is the next stage. It's not like the velcade didn't brought me down from 27 to 14 which is great. And overall I've come down from 50. So while for some people 14 is a bad number, for me, it's a pretty good one.

What I'm sad about is that it potentially rules out 2 main drugs from my treatment regime in the future...unless they're prepared to keep swapping me between drugs on a fairly frequent basis, I just don't seem to respond for more than a couple of cycles at a go. So that scares me and the 'what if's' start coming up in my head.
'What if the transplant doesn't give me a good remission (2-3 years) and I end up having to consider the allo (sibling transplant with 30% mortality rate in first year)?'
'What if I don't respond to any of the drugs any better?'
'What if I can no longer look at 5-7 years as a life prognosis, but am looking at 2-3 or less'

And then there is the whole frustration of that I now have to do another 1-2 cycles on the velcade while they decide if I've definitely plateaud. I don't mind being on it and having the neuropathy or the exhaustion, or any of the side effects if I know it is working. But to do it for no reason at all, when I know the drugs aren't working, just seems rubbish, unfair and totally totally crap. In some ways I hope the neuropathy gets worse so that they take me off for that reason.

And then I slap myself and tell myself to stop doing the 'what if's' and the miserableness at as it doesn't help anyone. And today I felt better about it than yesterday. So perhaps giving myself permission to do that whole morbid, sad thing for a day isn't a bad gets it out of my system (for a while at least) and allows me to get on with life like you have to, and to be honest, like I want to. I am always much happier when I don't allow it to take over my life.

So today started off better. I still feel ok as the neuropathy and other side effects have died down since my week off, and hopefully won't kick in for a few more days at least. So I went shopping, caught up with people and was doing ok. Until I heard the news that someone very close to me in the family has had some test results that aren't ideal. I don't want to talk about it in great detail on here as it isn't my place, but I love them very much and don't want them to be going through all of the insecurity that I can truly sympathise with. I don't want them to have to go through it and I now understand how helpless they feel with me. And if that person is reading this, I will ALWAYS be here for you and will ALWAYS do what I can for you while I am.

And here's hoping and praying that all the worry will be for nothing.....for them and for me!!

So bollocksy bollocks (oh out of all the words I shouldn't use, I love those so much!!) really does sum up the last week or so....and there are about 3 other events that I haven't even mentioned. I think 2011 could be a tough year for us as a family...but we are strong and WILL get through it. We are all very lucky to have each other, and very lucky to have close friends too.

Anyway, will update again after Friday.....

My family's snow fun!

My family's snow fun!

Snow Fun

Snow Fun