Vanessa's story

 

"I was completely shocked, myeloma? I was only 38, I’m a woman. I wasn’t ticking the boxes of your typical myeloma patient at all."

 

In 2010 Vanessa was diagnosed with myeloma - an incurable type of blood cancer - after seeking medical help for severe back pain, which she initially assumed was an injury from climbing; a hobby she had taken up earlier in the year. This year, Vanessa was amongst the first patients in the UK to be treated with the latest breakthrough treatment – Teclistamab; a type of immunotherapy known as a bispecific antibody.

"Around March 2010 I started getting back pain towards my chest area. At that time I had started climbing as a hobby; indoor walls, cliffs, bouldering etc, so I just assumed it was an injury from that, that I’d pulled a muscle in my back. I left it, assuming it would get better with time, but it didn’t; it became more and more painful."

"I had seen a physiotherapist and a chiropractor but the pain just wasn’t clearing, and at this point it had been over 3 months since it started. The year before, my then husband had been successfully treated for an issue with a disc in his back by Mr Damian Fahy, Consultant Spinal Surgeon at The Lister Hospital, so I booked to see him, thinking I had a similar problem. Mr Fahy arranged for me to have an MRI scan, which happened over the weekend, and on the Monday I had a phone call saying that I needed to discuss my results with him immediately. I was concerned of course, but I still believed it was something like a slipped disc."

Upon seeing Mr Fahy, he referred me to Mr Adrian Casey, Consultant Neurological & Spinal Surgeon at The Wellington Hospital, so I booked an appointment to see him."

Having initially planned to surgically remove Vanessa’s tumour, Mr Casey decided to explore other options. After a discussion with his colleagues, he referred Vanessa to Professor Kwee Yong, specialist in blood cancer, and one of the leading specialists in the treatment of patients with myeloma, at HCA Healthcare UK at University College Hospital.

"Mr Casey had planned to operate on my tumour but was concerned about the potential risk to my spine. That’s when he referred me to Professor Kwee Yong; so, I followed the expertise, and I am glad that I did. I’ve been with Kwee since and I owe my life to her; her expertise, her knowledge, her research, I think she is an absolute genius. I would follow her to Timbuktu if I needed to."

"Professor Yong agreed with Mr Casey at the time, that we should go down a different route. I had radiotherapy to minimise the tumour and began being treated with Velcade, a targeted type of chemotherapy in preparation for a stem cell transplant."

"During that time, from May to December, I began to have my stem cells harvested for my first stem cell transplant, which I had that December. That was a very difficult time, I was in hospital for over a month."

"But despite the challenges of the treatment, I went into remission for some time; from Summer 2011 to 2015. I was really living my best life, where I travelled all around the world, ate in amazing restaurants and drank in fantastic bars."

"In 2015, after that period of remission, I relapsed. Fortunately, they’d managed to harvest a large number of stem cells for my first transplant and had saved some of my stem cells in the freezer, which they used for my second stem cell transplant. Following this I went into remission for another two years, and from then until now I have been on various treatments."

"Most recently, I began treatment with a new immunotherapy wonder drug called Teclistamab. It’s incredible, as Kwee explained to me, T cells are part of our immune system, Teclistimab works by attaching itself to myeloma cells and alerting my T cells to come into contact and eliminate them. I was in hospital for two weeks whilst I had my initial treatment. I’ve been out for over a month now and my numbers are almost zero. When they told me how low my numbers were I was more in shock than anything, I’m still in shock about it. I can’t believe how well I have responded to it."

"Before I started Teclistamab, Emma and Nuno, two of our wonderful Clinical Nurse Specialists, did a presentation on it at one of our myeloma support groups, as hopefully a lot of people in the group will benefit. It was a good opportunity to ask questions and discuss it as a group."

"Like most drugs, there were potential side effects, some of which did worry me. But I decided to go ahead because, at the end of the day, I still have my life to live where I still have places to visit, restaurants to eat at and so many things I want to do. There were some side effects, the bone pain was difficult, I got some headaches and there was a lot of sweating, but I got the result I wanted, so it was worth it. I hope to get 2-3 years in remission before I move onto the next treatment. I like to think they will have developed something else by then, like they have with Teclistamab."

"When you’re diagnosed with myeloma you do have to be realistic. You can’t shy away from the fact that if you get diagnosed with myeloma you may only have 2 to 5 years. But equally, you also have to remember that there are lots of people like me who are living with this 5, 10 plus years on, and there are new drugs and therapies becoming available all the time."

"I remember being at one of the myeloma support groups. There were a couple of people who were still quite shell shocked from their diagnosis, and we got chatting. They asked me when I was diagnosed, and at the time it had been ten years ago. They said, ‘oh my goodness you look so well’, ‘I am well, I do feel well’, I said. I think just seeing someone who has lived with this for quite a long time is, in itself, reassuring. And I think I’m quite unique in that I’ve always had a really positive attitude to everything anyway, not just cancer; yes, bad stuff happens but let’s see how we can deal with it, that’s how I approach life."

"Just yesterday we had a myeloma coffee morning, and I had a couple of people say to me that I’d helped them in some capacity, just from being at the support group, which was really nice. You just have to keep going with this, I won’t stop unless I have to."