Tag Archives: Revlimid

One big muddle

It’s been a while since I last wrote (hmmm…..a common theme to this blog!) so I thought I would try to find half an hour to write a new post.

Things have been absolutely manic here; Nick took a new job, Nick left aforementioned job and took 3 months off work to enjoy the summer, Rebecca started secondary school, Sam has had exams for his secondary school, we bought a house, we redid the house and we put the house back on the market! In addition, I have started working for myself in an attempt to revive some sort of career in the charity sector and/or HR (whilst still being available for the kids). And the result…..one very tired me, and life turning into a big muddle!

In many ways, I’m not really surprised. It’s a lot to keep on top of at the best of times, but when your memory is shot like mine has become, it becomes even harder. I used to pride myself on my organisation skills and my ability to do ten things well at the same time. And my ability to remember names and what those people told me. Now…..not a chance. I don’t really know why. It could just be getting older. I know my older family also struggle a bit with their memory. Or it could be ‘chemo brain’ that everyone talks about. My body went through a fair whack when I went through my Stem Cell transplant in 2011, and in reality, I am still on a mild chemo drug for my maintenance now.

Whichever it is, it can be remarkably frustrating though. I tend to be someone who has lots and lots of ideas.I’m sure it drives people round the bend as I always have something that could be done better! My issue isn’t coming up with the ideas though, it is actually managing to remember them through to fruition. The number of great presents I’ve thought about, and then before I know it, it is 2 days before I need it and I have no way of sorting it out! Or birthday cards that I get a month before the date and then forget to send and so I look like we don’t care! Or friends I think about regularly but don’t call because I or they will be busy, and then I forget until it is again, impractical (thank god most of my friends forgive me my lack of calls!)

I definitely need to come up with a plan. Lists are one thing, but I often forget to write it down before it is forgotten….or I end up with lists in places that I forget about….so very frustrating. When we, one day, get our new home (yup, still in rented!), I hope that I can set up a system with a great big whiteboard to use! It could well be the answer.

Anyway, let’s forget that for now (no pun intended). One great thing that has happened this month is seeing our 12 year old start secondary school. I look back to when I was diagnosed with myeloma in 2009 and remember how convinced I was, that this wouldn’t ever happen. I don’t even think the consultants wanted to put my mind at rest on that one. It is hard to put into words how it felt to see her walk away from primary school and start on her new journey….and how proud I am to see her do it all with such happiness. Sam will do the same next year and I don’t have to worry if I will see him off which is amazing. Of course I still worry a bit about the future. I’d be lying if I said there is never any concern about that but I do feel like the concept of seeing them off to University is a realistic one now. I’m not wishing their lives away, but I need things to keep focusing on and looking forward to…they help to keep me positive!

It’s also why work is so important to me. I’ve now set up (through necessity!) as a sole trader so that I can do corporate fundraising for a Birmingham based orchestra that helps the local community. I’m hoping, that if I can work well with them, it may lead to more work and help me to have a role within the house as well as being a mum and wife. Oh, and if anyone out there needs help with their social media, minute taking, internet research etc, I’m happy to take on roles like that alongside what I’m already doing!

Right, talking of work, I probably  ought to go and do some now! I have my monthly hospital trip tomorrow, and my niece’s hen weekend on Friday so as always, life is very busy!

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Filed under general, Myeloma, Uncategorized

My myeloma pharmacy

So, recently a few older friends of mine have asked what’s going with me and my myeloma, and whether I am still on drugs!

Luckily, the answer is that not an awful lot is happening with my myeloma. I am still classed as being in ‘Very Good Partial Remission’ and my paraprotein results (the measure by which they try to monitor my myeloma), are still relatively low at just over 4.

It’s not quite as simple as being in remission though. To keep me there, I have been on a drug called Revlimid (Lenalidomide) as a maintenance therapy. After the initial period being on this, and being ill most months, they managed to get my dose to one that doesn’t lower my white blood count too much and so I take this drug for 2 weeks in 4. I honestly believe that my access to this drug, keeps me in remission. images-80I’m really lucky too that I got it on my trial as it isn’t yet available as a standard maintenance treatment as it is too expensive….£500 per day I believe! However, I’ve been in remission for nearly 5 years now, so it’s definitely done the job for me.

With my recent foot breaks, I’ve now made the decision to come off my bisphosphonate, zometa. Zometa is used to help strengthen the bone but in reality what I think it does is keep building bone, but the breaking down part of the bone cycle is stopped. This is ok perhaps with older patients, but for people like me who have been on it for 7 years now, my fear is that it has made my bones a little more brittle than normal. Please note though that this is NOT a medical diagnosis….just my thoughts on the matter! It would be interesting to know how many myeloma patients out there have issues with breaks in their extremities….and how many of them are on either zometa or revlimid as I’d love to know whether the drugs have caused the breaks that I’ve suffered in the last 2 years.

Other than that, I take aspirin, and I have to take drugs for bile malabsorption. For those of you who suffer with emergency toilet needs, it is definitely worth getting checked for this latter condition, as I have to say, the drugs I take for that now keep it totally under control….so long as I remember to take them!

It’s a bit of a pharmacy of drugs but all in all, my myeloma is kept well in check and I am able to live a pretty normal life. For all the conspiracy theory on pharmaceutical companies and cancer drugs, I am very grateful for the ones that I have 🙂

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Filed under general, illness, Myeloma

Happy Birthday dear stem cells!

I know that I probably do this post every year, but every year I am even more pleased to reach another ‘stem cell’ birthday.

4 years ago today, I was given back my stem cells at the Marsden in Surrey. I remember it far too well, especially the fact I promptly threw up as they pumped them back in to me! But despite the fact that it was a horrible experience, and 6 months of my life that I would happily forget, I can’t forget the fact that it has put me into a remission that has lasted far longer than I could have ever asked for.

I was talking about my remission just a couple of days ago with another myeloma friend. She had her transplant a couple of years after me and is slowly seeing her figures creeping upwards. That time that none of us want to hear about. But, and this will sound strange to anyone who hasn’t gone through treatment, she can’t wait to start again because it means she will get to have revlimid as a maintenance therapy afterwards. And I totally get that. I totally believe that my revlimid is what has kept me in remission for the last four years. It is why I used to get nervous if they ever talked about stopping it. Now it all may be in my head. But I don’t think so. And even if it is, who cares if it keeps me positive 🙂

I also reached the 6 year marker of diagnosis on Friday….I can’t believe it really. I continue to feel very blessed that I am doing so well and that I have had access to the right treatment for me….and that my fears all of those years ago have been proven wrong. Long may it last.

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Filed under general, Myeloma, Uncategorized