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. I’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 🙂

Confused, Down and unsure…

So things are a bit up in the air at the moment….and anyone who knows me will know that I hate it when life is like that. I am a control freak and there is no doubt about that. I like to know what is going to happen from one week to the next. Hmmm, things couldn’t really be any more different than that nowadays and I’m struggling a bit at the moment. 

Where do I start? I suppose the feeling of slight depression began when I went to hospital a couple of weeks ago. My main readings are great! My paraprotein levels have dropped down from 2 to 1…..originally pre-transplant, they had risen to 50! So there is nothing to be concerned about there…the paraprotein basically is a good indicator of whether or not my myeloma is active, and when it starts to rise again, the consultant will begin to worry! For the first time in months, I wasn’t neutropenic either so I was feeling pretty positive (When you are neutropenic, you aren’t ill, but you are at risk of catching infections). But then came the news that my consultant didn’t want me to continue self-injecting the G-CSF injections that I’d been having to raise my white blood count and prevent neutropenia. This was partially because they’re not great for you in the long run, but also because they made me achy and fluey for 24 hours after I’d had them. But if I just stopped taking the injections, it was strongly believed that I would become neutropenic again as a result of the maintenance therapy that I’m on at the moment, a drug called Revlimid (Lenalidomide).

I’m really lucky to receive revlimid as maintenance therapy as most patients ‘off-trial’ don’t get it, but I got randomised to have it through the Myeloma XI trial that I’m on. And to me it feels very much like a life-line….like without it I might relapse…and relapsing is my worst nightmare and one that I have pretty much banished from my thoughts while everything has been ticking along nicely. So what does my consultant want to do….well she’s now reduced my revlimid to being 10mg two weeks out of four…it used to be three weeks out of four. I have to get my bloods done half way through this cycle at our local hospital, and assuming that they are fine, we carry on with that protocol. But if I’m neutropenic yet again, they will revisit my drug levels again and probably reduce the revlimid even further. Don’t get me wrong…I’m not stupid and I know that the revlimid may not be the reason that I am still in remission. However, I really don’t like the idea of changing anything that is working. So all my fingers and toes are crossed that next week when I get my bloods done, that things will look nicely positive and I can stay on revlimid as it is now.

But my drug situation isn’t the only thing that I am finding hard at the moment. Work is posing a massive challenge. I absolutely love working for the charity I’m working for. They do a brilliant job, are on an exciting journey forward and are a brilliant team of people. But I’m really struggling with the level of flexibility that the role requires and the hours that I need to put in to do the job justice. And with a charity job, especially for a charity as wonderful as this one, you really can’t do a half-hearted attempt at working. The problem for me, is that the work is making me exhausted and stressed…..and I know that stress is a bad thing for myeloma and is more likely to make me relapse. Which ironically makes me more stressed as what happens if I ignore how I feel and get ill! 

I’m talking to them as we speak so they know how I’m feeling and hopefully we’ll come up with a resolution in the next couple of weeks. But I know deep down that I can’t keep things up as they stand at the moment. Fingers crossed we can make it work…..I love working and I love working for them, but the last thing I would want, would be to be a burden to a charity that uses its fundraising for such a good cause. I don’t feel I can expect anything from them, as it takes away from the people that we fundraise for…..sort of defeats the objective!

So watch this space to see what happens moving forwards….I can’t bear the idea of being out of work again as I’ve loved the independence of working and bringing in some money to the house…we’re off to Morocco in August and who know’s if we’d have afforded that without me working. But it isn’t worth getting ill for….