Jackie’s story

Jackie Nash, 55 years old from Lancashire was diagnosed with Amyloidosis in 2013.

Amyloidosis is a group of rare conditions caused by deposits of abnormal protein, amyloid, in tissues and organs throughout the body. Proteins that fold abnormally and collect together do not break down as easily as normal proteins and cab build up in tissues and organs leading to them not working properly. There are currently no treatments available that can directly remove the amyloid deposits associated with AL (Amyloid Light Chain) amyloidosis. Treatment aims to prevent the further production of abnormal light chains while monitoring and treating any problems affecting your organs.

Jackie shares her story below

I first started to notice something wasn’t quite right when I was on holiday in Egypt in 2012. I was having problems with my breathing, nausea and weight gain. At first I thought nothing of it, but when it continued once I was home I made an appointment with my GP. Initial blood tests showed nothing, and we thought it might be a virus. However when my symptoms worsened, my GP sent me for further tests and scans. It wasn’t until I had an ultrasound that the sonographer identified areas of swelling around my heart, which sent alarm bells in my mind. I was put on medication for my heart and blood pressure and underwent further tests. Doctors were unsure of a diagnosis and it wasn’t until the heart specialist at my local hospital that contacted the Haematology Department, who in turn then made contact with Dr Simon Gibbs, Haematologist at Manchester Royal Infirmary, that they thought it might be Amyloidosis.

Receiving my diagnosis

Although it sounds odd, when I finally got my diagnosis I was relieved. I’d spent the past six months worrying about what was causing my health to deteriorate. I saw it as the start of a journey, where I now had to concentrate on finding the best treatment possible and getting better. I started my chemotherapy and steroid treatment, currently used to prevent further protein build up, and it started off well. But then one evening my daughter noticed something wasn’t quite right and I had to be admitted to A&E. This was due to the side effects of the treatment I was receiving and is a common problem. It was decided that I should re start treatment on a reduced dosage to reduce the side effects and this worked well with my protein levels dropping low enough to have some time off the treatment. Unfortunately about a year later my protein levels began to rise and at this point we started to look at different treatment options.

Opportunity to take part in research

It was my consultant at the Manchester Royal Infirmary who suggested that I consider taking part in a new clinical trial they were recruiting for. As I mentioned previously I like to think positively and saw this as an option, to not only help improve my health, but potentially find a treatment for others with Amyloidosis. I read up a lot about the research and what it might mean for me. I also spoke to my previous consultant, who gave my original diagnosis, to see what he thought. There was no pressure to take part and the research team were on hand to answer any questions I had about taking part.

Taking part in a trial

After I received my first treatment on the trial drug, I was expecting to have a lot of side effects but I actually felt better, with a really good reduction in my nausea. I have been on the study for 27 cycles of treatment and continue to participate in the study, I’m happy to say that I’m currently in remission from Amyloidosis. As part of the study I’ve built up really good relationships with the doctors and research nurses who run the study. Study visits are worked in around my standard clinical appointments, so I don’t have to interrupt my life to attend hospital on multiple days. The additional care I receive as part of the study, such as regular monitoring and scans, reassures me that if my health deteriorates it will be picked up quickly.

Final thoughts

Since being on the trial, I’ve recommended others to consider research trials as an option. I’ve met many people through visits to the Amyloidosis specialist centre in and we have discussed how research is a great opportunity to get. If it means that we can play a role in developing new treatments for the future, I don’t see why anyone would turn that offer down.