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Patient experience: Living with multiple myeloma

Published on 19/02/18 at 10:51am

Pharmafocus talks to John Ellwood about the challenges of being diagnosed with multiple myeloma and how having a strong support network in crucial.

Could you tell me about your journey with myeloma?

I was initially diagnosed with smouldering myeloma, which is a latent form of myeloma where it’s liable to start but hasn’t yet. In 2012, the myeloma became active and it came with very severe back pains, which led to a vertebroplasty – essentially, cement poured in because I had three compressed vertebrae.

I then started a course of CTD (cyclophosphamide, thalidomide and dexamethasone), which is the standard first-line treatment for multiple myeloma. That got my paraprotein levels down to good enough to zero – this happened quite quickly. In October 2012, I had a stem cell transplant, using my own cells, and then I was in remission from January onwards. I stayed in remission until May 2015, when I had another few compressed vertebrae and another vertebroplasty, which meant I had eight compressed fractures all together. The vertebroplasty procedures were actually very effective. I was able to walk the Cotswold Way (102 miles) in small stages between May 2014 and October 2017.

I was then put on six months of carfilzomib (Kyprolis) in 2015, but was then randomised out of the trial – by that time my paraprotein levels were near enough to zero again. I stayed in remission but not for long, so for me it only helped for six weeks. My clinician then tried to do another stem cell harvest, but couldn’t get enough stems. At this point, we started scratching our heads, thinking: “What do we do now?”

The next step seemed to be a step in the right direction for now, I went onto ixazomib (Ninlaro) around February 2016 as a third-line treatment and stayed on that alongside lenalidomide (Revlimid) and dexamethasone from February to October 2016. The treatment brought my paraprotein down to zero and I was assessed to be fit enough to receive donor stem cells in November in 2016. I’ve now been in remission for over a year.

What was your reaction to your diagnosis?

Quite a lot of cancer patients will tell you that once you’ve had a diagnosis, you obviously ask for the prognosis and you’re given so many years. Suddenly, time becomes your most precious resource. For me, it became about maximising the time; it may be short or it may be long, you just don’t know. I’ve got children and grandchildren to spend time with and I recently did a freelance journalism course so I’m trying to get into that.

I actually wrote an article for Myeloma Matters, Myeloma UK’s magazine. I’m particularly interested in the mental and psychological aspect, in how you can live well with myeloma.

A lot of people say “stay positive”, but after a while I began to think: “I know that’s true but would someone please tell me how I do that?” It’s easier said than done; despite it being great advice I still think you need to put some flesh on the bones. So what I did was to try to say how you can actually get your head around it, with around eight suggestions to help with that.

Did you have any indications prior to diagnosis that there might have been an underlying health issue?

No, absolutely not – it came completely out of the blue. I had a blood test for something else, which didn’t prove to be alarming. However, somebody was sharp enough to say: “Hang on a minute, those white blood cells don’t look right”.

That’s quite unusual, isn’t it? It seems that many people experience problems with their bones prior to diagnosis.

Yes, that’s right. It’s both good and bad, really. It’s primarily good because it means they picked it up early. The bad thing is that it came completely out of the blue.

What was your career at the time?

I was a head teacher at the time, approaching 60 and asking various questions about whether it was time to step aside or not. Then the myeloma diagnosis came and it formed part of my decision to step back. In the end, I stopped being a head and went back to work as a teacher part-time.

Have you spent time researching myeloma after diagnosis?

I’m not a great one for surfing the internet on myeloma because there is a mix of good advice and information on there and some nonsense, and often is it difficult to tell what is credible or not. I decided early on that I’m in no position to decide what quantifies as good or bad information, therefore  I actually asked a friend: “Would you look on my behalf and decide what you think is going to be useful?” I’ve found that this is quite a good way of managing the information I read actually.

How did you manage the mental side of the diagnosis?

The thing about this disease is that it is remission, relapse, remission, relapse. When you’re in remission, you can live your life pretty much as normal; you are a bit short of energy and I’ve got a sore back, but apart from that I can continue as normal. This is not true for every cancer. This is why it’s a question of trying to get your head around it. Some people are more prone to anxiety than others; I’m perhaps less prone, I don’t know. There’s certainly a lot to worry about, on one level because you don’t know when it’s going to come back or if it’s going to come back – you’re told it will, but I’m hoping that this is a more lengthy remission than the last and that I’ve got several years left to enjoy.

How was your experience with the various treatments you were given?

To me, time is the biggest factor. For ixazomib, I call it the ‘gift of time’, because it gives you that little bit extra. Of course, it’s not a huge amount – nine or twelve months, but it is better than nothing. Plus, one of the advantages is that it is an oral medication so you can take it at the comfort of your own home. With other medications, it usually takes two and a half or three-quarter days per week, I had to go to the hospital and there was a lot of waiting for the infusion.

Being able to take ixazomib from home means that you get your two days back, which is wonderful. I’m grateful to Takeda. They’ve produced a drug that works. It’s not a world-beater or a silver bullet, but maybe it’s a step in that direction.

Myeloma is a unique cancer, different people react differently to it. For instance, carfilzomib didn’t work for me – it got the paraprotein down but it didn’t hold, and six weeks after taking it I was back in relapse. However, I don’t think that’s everyone’s experience with carfilzomib and so the fact that doctors could turn to another treatment option that has worked is great. I’m sure the doctors would tell you that the more weapons they have in their armoury to fight this thing, the better.

Treatments, of course, unfortunately often come with side-effects – what were the most notable problems you experienced?

I didn’t react well to dexamethasone, I experienced mood swings randomly -– I know some people who describe it as dexarage! It means that you can fly off the handle quite easily and I presume it’s the effect of many steroids. It certainly made me emotionally less stable during that period. Otherwise, the side effects I suffered from were quite mild: some stomach upset and some fatigue.

Who did you have to provide support during these periods?

I am incredibly well-supported, on three fronts; number one is family. My wife has been brilliant and my brother as well – he actually produced the donor stem cells! My parents and children have been really understanding, though probably a bit anxious. I’m proud of the church family that have supported me, it’s a big help when you have 50 or 60 people praying for you and supporting you. Lastly, the medical team treating me were fantastic, right the way through and continue to be.

How was your experience of NHS care?

I find it very difficult to fault them. You hear the press pick up on various things, and I suppose bad news can make better news than good. From my experience, as someone having a serious illness with cancer, they have been quite remarkable. The nurses in the day care centre never seem to have bad days! They’re constantly encouraging, caring, know their stuff and are professional.  Ditto the consultants, who have kept me informed right throughout and have advised me through difficult decisions.

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