‘I know when it comes back, the next treatment will be waiting’ – Cecelia’s myeloma story
Cecelia Brunott, 48, was diagnosed with myeloma in 2020. She had a stem cell transplant and is currently taking a targeted treatment to keep her cancer stable. She lives in Farnham, Surrey, with her wife Eva.
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I was 44 when I was diagnosed with myeloma, a type of blood cancer. Before then I was healthy and active, and worked hard in my career in client services. I played badminton, cycled a lot and enjoyed spending weekends with my wife, Eva. We got married in July 2017 and had been together six years before that. She's from Greece, I'm from South Africa, and somehow we both ended up in the UK, which is where we met. It was obviously meant to be.
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Before my diagnosis, I'd never really had any sort of medical issues. I’d always been healthy and relatively strong. The first sign that something was wrong was in March 2020 when I pulled my back slightly while putting a wooden pallet in the back of my car. I didn't think much of it, but the pain got worse and worse, so I went to the doctor a few times, who kept prescribing me painkillers.
Eventually my mum, who lives in South Africa, asked why I hadn’t had an MRI, even after I’d gone to A&E because I couldn’t move. Instead, I was referred to a gastroenterologist because I was anaemic, but my iron levels were fine.
There were weeks of delays due to Covid and eventually, after another painful episode of back spasms, my mum offered to help us with the cost of a private MRI – we knew something wasn’t right. A few days after the MRI I was called with the results and told my lymph nodes were about three times the size they should be. I was told to get in touch with my GP urgently because it could have been an indication of non-Hodgkin's lymphoma.
‘I was booked in for a lymph node biopsy’
After contacting my GP I was quickly referred to a local hospital and booked in for a lymph node biopsy in my neck. It was a difficult time. My mum was asking about the MRI results, and I didn’t want to tell her anything until I knew for sure.
Then, on 29 September 2020, I was called into the hospital. It was the middle of Covid and I knew something was wrong. They let Eva come with me, which was lovely, because at the time, everybody was told, ‘you can't bring anybody with you’.
The consultant was fantastic, she told me that I had myeloma and explained everything to us so well.
And so, with this diagnosis, I began the difficult task of sharing this information with family and friends. I arranged for my brother to be with my mother when we told her as she lives alone.
Telling people you have been diagnosed with cancer is hard. People hear the word cancer and you find you are having to manage their reaction and emotions as well as your own which makes these conversations very difficult.
On the day I was diagnosed I had a bone marrow biopsy and was sent home with a big bag of medications and a schedule of when to take what. The bone marrow was sent away for genetic testing, which showed that my myeloma was not of the ‘high risk’ variety. I started six cycles of my treatment: Velcade, thalidomide and dexamethasone. My bloods were checked at the end of each cycle and luckily, I was very responsive.
‘After high dose chemo I had a stem cell transplant’
The myeloma is measured by the amount of paraproteins (abnormal proteins made by plasma cells) in the blood – they should be undetectable. Mine were dropping every month. Every 28 days, they were halving, which was great. In April 2021, I went for a stem cell harvest at The Royal Marsden. And on the first of June, I went in for an autologous stem cell transplant.
On the day I arrived I was given high dose chemo, and the following day they did the transplant.
About three days later your immune system starts to deteriorate and your immunity drops to zero. During this time I felt awful for about three days, which unfortunately coincided with my 45th birthday. I was rock bottom all day and also was not allowed to see anybody, because of Covid.
But Eva had contacted all my friends and family, and asked them to send photos, which she turned into a photo jigsaw puzzle. I was too weak and unwell to complete it in hospital but when I was recovering at home I finished it, and it’s now on the wall in our house. It was such an excellent, thoughtful gift.
Before I went in for my stem cell treatment, the drug lenalidomide hadn't yet been approved for use on the NHS, but by the time I was in recovery it had.
It was recommended as a maintenance drug by my consultant because it has been shown to lengthen remission time after stem cell transplant. Since myeloma is not curable, the aim is to get it into remission and keep it there as long as possible.
I've been on it since September 2021, and I’ve responded very well. I don't describe myself as being in remission, but when I came out of my stem cell treatment, I still had a paraprotein reading of three.
‘Life now is about as normal as it could be’
Since being treated with lenalidomide, my paraprotein numbers have come down, and as of March 2022, they have been undetectable. My bloods are done every two to three months, and I am stable.
Life now is about as normal as it could be. I managed to stay working full time throughout most of my treatment. Eva and I are travelling, we're planning holidays. My mum came to spend Christmas with us last year. She knew it would be cold and dark but she had a wonderful time.
In June last year, Eva and I welcomed our beautiful Eurasier puppy, Maya, into our family and I’m able to walk her most days.
There are side-effects to taking lenalidomide. Fatigue is the biggest one and I can pretty much say I'm always tired to some degree, and no amount of sleep will help. So there are some days when I can’t get out, but thankfully most of the time I can. There are also some stomach issues that have to be managed.
I know some people also get rashes. I had an itch after the first cycle, and I took some antihistamines, and that went away.
I think I've been quite lucky with side effects in general. They've always been there, but they are not debilitating for me, whereas they are for some people.
I only know this because I run a support group for people with myeloma who are in their 50s and younger. We have monthly meetings, and we have a WhatsApp community now as well, which has grown.
‘I want to spend my time enjoying life’
For me on-going maintenance treatment and scans are part of my life. I try not to worry about stuff that's not within my control, and this is very much outside of my control. So I don't want to unnecessarily cause myself stress and worry.
I know it’s going to come back at some point. I just don't know when. But I don't want to live in fear, because I know that there are so many medications out there. It's amazing the amount of research that's happening, so many trials going on.
When the time comes, we will deal with it and I will move on to the next treatment. I don't want to spend my time worrying. I want to spend my time enjoying life.
There are new treatments being approved for use on the NHS, including bispecific antibody drugs that bring the body’s immune system T cells in close contact with myeloma cells, enabling the immune system to recognise and kill the cancer cells.
So I know that when it comes back, the next treatment will be waiting for me. In the meantime, I'm not going to worry about it too much, because I need to live my life. Overall survival rates for myeloma have quadrupled in the last 10 to 20 years. And that's purely because of advancements in research and the resulting medications.
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