A reprieve

So we’ve had some relatively positive news which is that my paraprotein has gone down ever so slightly which means my consultant is happy to keep me on the current treatment for the time being and not move me to DT Pace which I/ we were dreading!

It doesn’t mean he won’t change his mind, but it’s good news for now and we just have to just keep our fingers crossed that it doesn’t go up again quickly….and in fact that it goes down. The other impact is that my transplant will probably be a bit later than we’d expected….again it’ll all depend on what happens with the figures but it looks likely that it won’t be before the summer now rather than April/May.

That could be really good as it’s a nicer time to recuperate after my 3 weeks in hospital, will mean the kids can get to places in the light and also means we can keep getting work done on the house! We’re desperately trying to do as much as we can this year before the transplant so we can enjoy it after!! We just have to avoid when Rebecca does her Rangers community project in Romania as she doesn’t want to be worrying – sort of hoping we could go for a time just after she gets back in August!! But we’ll see!

Anyway, thought I’d just update the score as so many of you have been in touch and sent best wishes to us all – bear with us – it’s even more of a yo-yo for us than it is for you!!

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Thanks

Thought I’d just write a quick post to thank everyone for contacting Nick and me to send us love and support after my last post.

We really do appreciate it all massively. We’re busy trying to bury our heads until we know the full story this week…and hoping that my numbers will do another spin around!! Well I am anyway!

So we’ve spent the weekend doing house renovations, playing games with the kids and generally having a nice time with family and friends. And trying not to think about myeloma at all! My plan is to keep as busy as I can until I find out more at the latter end of this week! And if that means exhausting myself doing work on the house, brilliant – at least then I’ll sleep through the next few days 😂

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Facing a New Future

Another post where I start writing it before I have all of the facts. I actually felt physically sick from my appointment yesterday. More worried than I’ve probably felt since I was first diagnosed back in 2009. I want to be honest but I’m actually quite scared about what honest might look like.

Yesterday, my consultant told me 2 things that weren’t great. He told me the lesser of the two things first: My stem cells – not enough were harvested back in 2011. Not a huge deal. It means I have to go through a stem cell harvest again (which I hadn’t wanted due to being really ill first time), but the process is easier at the QE with them not making you have chemo – just the G-CSF injections (these stimulate your body into making more stem cells).

So whilst this wasn’t the news I’d wanted after months of waiting to hear, it also didn’t feel like the end of the world. I could still harvest in March / April and have my transplant in April/May. This was scenario one.

However the second thing was: My Paraprotein levels look like they’ve plateaued. Now this could be ok if they decide they have only plateaued and aren’t rising. But his fear is that actually, they’d like them to be lower than what they are (9.4), and that if this is the case, they would like me to have some extra chemotherapy to really blast them before a transplant. This wouldn’t just be chemotherapy like I’ve been on for the last six months where a lot of life has been able to continue. This would be me on a cocktail of high dose drugs (called DT-Pace) that I would be given 24/7 for 4 days, and where it could take up to 28 days to recover (in hospital). This would probably be repeated at least twice in the hope that my paraprotein would decrease. Then I’d still have to go back for the Stem Cell Transplant after this where I would definitely be in hospital for 3 weeks. This DT-Pace would result in an earlier hair loss and being pretty poorly. And would really disrupt everything for the kids, and for Nick for an extra 4 months or so.

But what I’m really scared about is that it would mean that I’d be on my third line of treatment. With myeloma, every time you go down a different treatment route, you are getting closer to running out of options. First and second aren’t the end of the world. Third probably isn’t either. But if my myeloma has mutated that much, it might not respond to third line treatment either. And is less likely to give me as deep a response.

I have spent the last 8 years becoming a ‘glass half full’ person. I’ve tried so hard not to let myeloma dictate who I am, what I do, or allow it to negatively consume me. I think I’ve succeeded. But this is all very scary and I am back to that feeling of helplessness and a fear of what might happen in the future. I am so scared I won’t see the kids leave school, or graduate. Will we get to finish the house that Nick and I have been lovingly trying to renovate? Will I reach my 50th – something I took for granted even when I knew I was relapsing. I never thought I might not actually reach it.

I know this might be a tough post to read. Believe me, if it’s tough for you, it’s even tougher for me to live it. And for Nick.

So bear with us at the moment. We’re trying to work out our priorities. We’re trying to make the right decisions – for the four of us first and foremost. But then for everyone around us. And we don’t want to give up – there’s a long way to go.

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